THE PRESIDENTIAL COMMISSION on the ~ HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC H EARI NG ON Discrimination, Ethics and Testing __ March 16, 17, 18, 1988 ll August 24, 1988 TO OUR READERS: ~The Presidential Commission on the HIV Epidemic held over 45 days of hearings and site visits in preparation for our final report to the President submitted on June 27, 1988. On behalf of the Commission, we hope you will find the contents of this document as helpful in your endeavors as we found it valuable in ours. We wish to thank the hundreds of witnesses and special friends of the Commission who helped us successfully complete these hearings. Many people generously devoted their volunteer time in these efforts, particularly in setting up our site visits, and we want to fully acknowledge their work. The staff of the Presidential Commission worked around the clock, seven days a week to prepare and coordinate the hearings and finally to edit the transcripts, all the while keeping up with our demanding schedule as well as their other work. In that regard, for this Hearing on Discrimination, Ethics, and Testing, we would like to acknowledge the special work of Nancy Wolicki, along with Leo Arnaiz, Emily Cooke, Christine Grady, and Amy Harshman, in putting together the hearing, and Leo Arnaiz and Macy Moy, in editing the transcript so it is readable. For the really devoted reader, further background information on these hearings is available in the Commission files, as well as the briefing books given to all Commissioners before each hearing. These can be obtained from the National Archives and Records Administration, Washington, D.C. 20408. One last note--We were only able to print these hearings due to the gracious and tremendous courtesies extended by Secretary Bowen's Executive Office, especially Dolores Klopfer and her staff, Reginald Andrews, Sandra Eubanks and Phyllis Noble. Sincerely, Ruy x duct Polly /L. Gaul Gloria fd Executive Director Administrative Officer re PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC COMMISSIONERS ADMIRAL JAMES D. WATKINS, CHAIRMAN UNITED STATES NAVY (RETIRED) COLLEEN CONWAY-WELCH, Ph.D. JOHN J. CREEDON THERESA L. CRENSHAW, M.D. RICHARD M. DEVOS KRISTINE M. GEBBIE, R.N., M.N. BURTON JAMES LEE, III, M.D. FRANK LILLY, Ph.D. HIS EMINENCE JOHN CARDINAL O'CONNOR BENY J. PRIMM, M.D. REPRESENTATIVE PENNY PULLEN CORY ServVAAS, M.D. WILLIAM WALSH, M.D. PRESIDENTIAL COMMISSION ON THE HUMAN IMMUNODEFICIENCY VIRUS EPIDEMIC HEARING ON DISCRIMINATION, ETHICS, AND TESTING The Hearing was held at the Vanderbilt University Stadium Club 25th Avenue and Kensington Street Nashville, Tennessee Wednesday, March 16, 1988 COMMISSION MEMBERS PRESENT: ADMIRAL JAMES D. WATKINS (Ret.), CHAIRMAN COLLEEN CONWAY=-WELCH, PH.D. JOHN J. CREEDON THERESA L. CRENSHAW, M.D. RICHARD M. DevVOS KRISTINE M. GEBBIE, R.N., M.N. BURTON JAMES LEE, III, M.D. FRANK LILLY, PH.D. BENY J. PRIMM, M.D. PENNY PULLEN, M.D. CORY SERVAAS, M.D. POLLY L. GAULT, EXECUTIVE DIRECTOR COMMISSION MEMBERS ‘NOT ATTENDING: JOHN CARDINAL O'CONNOR WILLIAM B. WALSH, M.D. \ I-N-D-E~X PAG WELCOME Admiral Watkins, Chairman 1 PANEL ONE PERSONS WHO HAVE EXPERIENCED AIDS-RELATED DISCRIMINATIONS Mrs. MacDonald 1 Sister of AIDS Patient Nora Mowery 3 Joel Starkey 5 PANEL TWO EXTENT OF DISCRIMINATION IN THE WORKPLACE, HOUSING, AND THE SCHOOLS Mitchell Karp, Supervising Attorney 18 AIDS Discrimination Unit, New York City Human Rights Commission Curtis Decker, Executive Director 20 National Association of Protection and Advocacy Systems Benjamin Schatz, Director 23 AIDS Civil Rights Project National Gay Rights Advocates Abby Rubenfeld, Legal Director 26 Lambda Legal Defense and Education Fund Katy Taylor, Deputy Director 37 AIDS Discrimination Unit, New York City PANEL THREE LEGAL REMEDIES William Hubbard, Chairperson 61 Young Lawyers Division William T. Carlson 63 Member of the AIDS Coordinating Committee American Bar Association Bonnie Milsteen 65 Dolkart and Zavos Audrey Morton, Director 69 Office for Civil Rights, Department of Health and Human Services Nan Hunter, Staff Counsel 71 American Civil Liberties Union a I-N-D-E-X (continued) PAGE PANEL THREE (continued) LEGAL REMEDIES James Gladden 75 Mayer, Brown and Platt PANEL FOUR COMMUNITY EFFORTS TO PREVENT DISCRIMINATION David I. Schulman, Deputy City Attorney 102 AIDS Discrimination Unit Robert E. Stein, President 104 Environmental Mediation International John Grant, M.D., M.P.H 108 Caroline County Health Officer William Gussner, Ph.D., 111 Superintendent of Schools ADJOURNMENT 139 PROCEEDINGS... MS. GAULT: My name is Polly Gault. I am the ; designated federal official here. I want to welcome all the members of the President's Commission and our guests today. Mr. Chairman? CHAIRMAN WATKINS: Good morning. Today, the Presidential Commission on the HIV epidemic will address the issue of discrimination in the workplace, in housing and schools. I would like to welcome you all and thank our witnesses who have taken time to travel here today to discuss this important issue with us. As documented in many public accounts and the increasing accumulation of case law, an identification with AIDS for a person has led to incidents of discrimination for that person. Today, we will examine the nature and extent of that discrimination and consider strategies to resolve AIDS-related disputes and help prevent discrimination in the future. We will hear from legal experts who have analyzed both federal and state law and the application of existing laws to the discriminatory treatment experienced by persons with AIDS. To educate students and workers about AIDS in local communities, witnesses will describe model programs which have prevented discrimination in public schools, in workplaces, in government offices, and in the general community. I am delighted that a number of leading figures in the country who are dealing with AIDS-related discrimination have come here today to share their experiences with us. We will be asking for their recommendations about the best means to help persons who are experiencing this discrimination, as well as to prevent further discrimination in future times. We have a full agenda. So, I would like to begin with the witnesses from our first panel, Mrs. Norma Mowery, with her son Dwayne Mowery; the sister of a person with AIDS patient, and Joel Starkey. So, I would like to begin then with Mrs. MacDonald, if you would like to give us your statement, Mrs. MacDonald? SISTER OF AIDS PATIENT: Thank you. It is difficult enough to accept the fact that someone you love has AIDS, and what is even more distressing is the bigotry, cruel treatment and hysterical fear that hospitalized AIDS patients are forced to endure from people in the medical profession. In this regard, I thank you for giving me the opportunity to put on public record some examples of the discriminatory treatment my brother received as an AIDS patient. Many times when my brother was hospitalized and bedridden, the kitchen staff would leave his meal tray in the hall. If a family member or friend didn't happen to visit during mealtimes and bring in his tray, my brother didn't eat. Often nurses would forget to give him medication or forget to hang another unit of desperately needed blood. The week he was dying, my family visited him in the hospital and had to bathe him and change bed linens because the staff hadn't done it. When a complaint was made to a doctor regarding this neglectful treatment, he shrugged his shoulders and casually said that he could do nothing about it. One of the most deplorable incidents was when my brother was extremely weak and required assistance to get from his hospital bed into the bathroom. When he called for a nurse, no one came. Eventually my brother attempted to make it on his own but fell, not making it to the bathroom. Unable to care for himself, my brother was forced to sit in his own excrement for some time. My mother happened to visit a while later, and upon finding him, ran to the nurse's station for help. The nurse's response was "I am not going in there. That is AIDS." My brother often expressed defeat and humiliation by this treatment. I am sure it is extremely difficult for people in the medical profession to care for the growing number of AIDS patients. However, AIDS patients have a right to competent and proper medical care. I believe that health care workers' responsibilities include not only giving the proper drugs but giving compassion to patients, as well. In this regard, I would like to put before you a few suggestions that might help improve the situation. One, establish a mandatory educational program for all hospital employees from cleaning staff to doctors on facts about AIDS, how to care for AIDS patients safely and the importance of the human element in the course of their treatment. Seminars could be held on hospital premises and conducted during the various shifts so that all workers are able to attend. Two, provide professional and confidential counseling for health care workers. A department could be set up for hospital workers to go and voice their fears or grievances to a trained professional about caring for AIDS patients on a daily basis. Three, make available to AIDS patients hospital representatives to whom patients could confidentially report discriminatory treatment. One of my brother's strong fears was retribution by the staff for reporting any misconduct. Once reported the staff member involved could then receive some private counseling. Four, institute a system whereby those health care professionals who have repeated complaints made against them in the neglectful treatment of AIDS patients, despite having attended the seminars and having received counseling are formally reprimanded and placed on probation. Further discriminatory behavior, by the individual towards AIDS patients would then be grounds for dismissal. Five, establish a monitoring system whereby a hospital representative or representatives make daily rounds to AIDS patients' rooms to check on room cleanliness, to see that patients are getting their meals and to monitor the general well-being of the AIDS patient. | In view of the fact that a cure for AIDS is not in our immediate future, that a great stigma is associated with AIDS and that AIDS patients are routinely the victims of discriminatory behavior of many health care workers, no > measure is too extreme. N The victims of aips have the right to proper medical care. At the very least, AIDS patients have the right to die [ ith dignity. we « ~ Again, thank you for the opportunity of relating my brother's story to you. I hope it will serve to help other AIDS patients and their families so that they will not have to endure what my brother and my family did. CHAIRMAN —e you. Mrs. Mowery? MRS. MOWERY: Mr. Chairman, members of the Commission, my name is Nora Mowery. I Niive in Lake City, Tennessee. My husband, Jimmy, and I are proud parents of three children. I am here today to tell you about what has happened to us and our oldest child, Dwayne, who is 12. I would, also, like to tell you some things I hope you will try to change. Maybe that will help us and others in the same situation. Dwayne has hemophilia and is, also, learning disabled. Dwayne tests positive for the antibody to the HIV virus. He was exposed to the virus through contaminated blood products he takes to help control his blood clotting. He does not have AIDS now. We desperately hope he does not get AIDS in the future. We know he is at increased risk. For these reasons, we worry about him all the time, but we have learned to live with it. Until this school year, he received services at the Daniel Arthur Center. This was a separate school for children who are handicapped. In March 1986, a meeting was held at Dwayne's school about his program. He had been missing a lot of school because of having to be factored. At that meeting, I told the hemophilia clinic that they could give information to the school about Dwayne. This was so he could be factored at school and not miss so manydays. Within days, the information about Dwayne's HIV status had been released by his teacher to parent persons outside those working with Dwayne. That was the beginning of a bigger nightmare. At this point in my story, it is very important as a focal point of what this series of hearings is about. To get education for ny child, I had to give information to the school, but giving out this information caused my privacy to be destroyed, and now, my child does not get the education he needs. When Daniel Arthur School was closed, Dwayne was zoned to go to Lake City Middle School this year. Once again, the information about his HIV status was released by employees of the school system. This was done without my permission. It was, also, done against my request that no information be released. Many newspaper articles appeared about Dwayne and his situation. They contained information that only the school system had. Both the superintendent of Anderson County Schools and the principal of Lake City Elementary School where Dwayne might have gone talked to television reporters and newspaper reporters. This was without my permission. It was as if our privacy meant nothing to these people. My front yard became a campground for press and public. Reporters banged on my front door and would not leave me alone. One even took a "peeping" in my neighbor's back door. The board of education did not want to let my child in school. The most vocal opponent has been a doctor on the board who should have known better. The superintendent did not want to let my child in school. He only let Dwayne in school when we told him we would sue if they did not, and then he only did it because he knew he would lose the case. The most telling point of these meetings was when they told me Dwayne would be in danger. Either a school can keep children safe or something is wrong. Once Dwayne was in self-contained class‘in Lake City Middle School, the teachers and principal were very good to him. I know that they were scared. I, also, know that they found it very hard. When Dwayne went to school, we had to try to find ways to get him into the building to avoid the crowd. We did not know what they would do. We were scared. A child should not have to sneak around and go to the back door to get into school. He should not have to be afraid for his life because he wants to learn. After three days of fear, we took Dwayne out of school. Nobody seemed to be able to stop the threats. Nobody 4 Seemed to be able to protect us. When people drive past your house with signs saying, "Killing, killing, killing," you have to be afraid. The crowd kept getting "uglier." All it takes is one hothead. So, we took Dwayne out of school. Now, Dwayne attends the gifted center by himself four days a week. On Wednesday, he does not go to school because they don't want him around the other kids. If a teacher is sick or has car trouble, he cannot go to school. There is no substitute. He does not like school anymore. He has no chance to make friends. One of the reasons you go to school is to make friends. So, here we are at the end of the school year. We are still trying to get an education for Dwayne. I think there has been some change in Lake City. I think more people would support us now. I think more people wish they had supported us then. To all those who did, I say, "Thank you." I have two recommendations. First, attach penalties to violations of confidentiality; second, make HIV antibody positive ARC and AIDS a specific covered position under the handicapped education rules. I would like to thank two groups who helped us very much; Dr. Hanna and Steve Root at the Hemophilia Center have been more help than they will ever know. Also, E.A.C.H incorporated -~ Tennessee's protection and advisory system has been very, very helpful to us protecting Dwayne's rights. Finally, I wish I did not have to be here. I wish none of this had happened. I try to forget it all. I wish I aid not know about you and you did not know about me. I wish Dwayne was in a regular school where he belongs, but if all of this has helped someone understand what happens to people like us, perhaps there may be some worth to it. Thank you. CHAIRMAN WATKINS: Thank you very much, Mrs. Mowery. We had a chance to talk a bit before the hearing this morning, and I wasn't sure whether Dwayne would like to say anything to the Commission. We would be pleased to hear from him, but we certainly don't want to put any pressure on you, Dwayne. All right, we will hear from Mr. Joel Starkey next. MR. STARKEY: Mr. Chairman, members of the Commission, AIDS discrimination comes in many forms. For some it is the loss of employment and income. For others, it is the loss of housing or the exclusion from school. For some, it is violence in the form of house burning, as we witnessed in Arcadia, Florida, last year. For me, it has come in the form of a loss of health insurance benefits due to a severe reduction in benefits by the health insurance plan I am insured under at work. On December 19, 1986, I was admitted to the hospital with a case of PCP, pneumocystis pneumonia, and was subsequently diagnosed with the disease known as AIDS. At the time of diagnosis, I was covered by a company~sponsored health insurance plan that provided for benefits for AIDS as’ it would*for any other disease. All my medical costs were covered 100 percent after all deductibles were met. The plan was with the American Heritage Insurance Company based in Jacksonville, Florida. Health insurance was working as it was supposed, in that the insured, myself, was being protected from financial ruin due to catastrophic illness, AIDS. The group health policy with the American Heritage Insurance Company was a typical medical major plan with lifetime maximum benefits of $1 million worth of medical benefits. The policy treated AIDS like any illness, such as heart disease, diabetes, lung cancer and paid all the medical expenses, including the cost of AZT, which we all know is quite expensive. Then on August 24, 1987, I was notified by the firm that I work for that they were changing health insurance plans. I did not at first, have a concern because I knew a period of open enrollment would exist when new plans are supposed to take people "as is" from old plans, and they would be obligated to take me "as is" and carry me like the old plan. However, in examining the benefit coverage provided by the new carrier, Florida Food Benefit Trust, I was stunned and shocked to find a specific benefit reduction clause for the condition known as AIDS. The policy limited benefits to $5000 per year with a $15,000 lifetime maximum of medical benefits coverage. The same policy provides lifetime maximum and medical benefits of $1 million for all non-related AIDS conditions, such as cancer, diabetes, heart disease and so on. This represents a loss of $985,000 worth of lifetime medical benefits to the person with AIDS insured under this plan. It is discrimination, pure and simple. It is, also, an attempt to set up two types-of health care, one type very limited for the person with AIDS and another type which provides adequate coverage for: those not so diagnosed. If it is allowed to go unchallenged and spreads throughout the health ‘insurance industry, it will mean that many PWAs will be without adequate resources for medical care or will have to impoverish themselves to qualify for governmental programs, such as Medicaid and/or Medicare. This will adda burden onto those systems of health care payments that do not really need to be burdened in this manner. When I realized the nature of this discrimination, I notified the State of Florida, Department of Insurance. I was informed by the Department of Insurance that while policy guidelines were being established to prohibit this type of AIDS-related discrimination and are still 6 in the process of being established 6 months after I contacted the agency, the Department had no jurisdiction over health plans such as I was covered under. They had the jurisdiction over, like, Aetna, Blue Cross, Provident and so on, but I was covered under a self-insured trust, something known as a multiple employer welfare arrangement. I subsequently contacted groups which were involved in fighting AIDS-related discrimination, such as the American Civil Liberties Union, the Lambda Legal Defense Fund and the National Gay Rights Advocates. The National Gay Rights Advocates is now helping me to fight this type of discrimination by legal means. One thing a person with AIDS realizes real fast is that she or he has two fights. The first fight or struggle is with the disease itself. The second fight or struggle is against the discrimination that follows diagnosis. I intend to fight the disease to the best of my ability and hopefully to a successful conclusion. I consider myself a victor to be and not a victim, and likewise, I intend to fight AIDS-related discrimination wherever and whenever it rears its ugly head. I intend to be a victor here, as well. Discrimination has no place in an epidemic of this nature. It will only hinder the successful resolution of the epidemic and feed much of the fear, ignorance and hysteria which already surrounds the issue. I am not really sure how to recommend measures to be taken to end the type of health insurance discrimination I have outlined. For one thing, I am not a health insurance expert. I am just an average person who happens to have AIDS. I am being represented by Mr. Ben Schatz of the National Gay Rights Advocates in this issue. He will be on the panel following this panel and will discuss the relationship between the self-insured type of health plans, the multiple employer welfare arrangements and ERISA. While the self-insured health plans are not subject to state law, they are subject to ERISA federal jurisdiction. He will be making recommendations on how this type of discrimination can be prohibited. As for myself, I have written to members of the House. of Representatives and the US Senate regarding pending federal legislation on health insurance coverage for all workers. I have outlined the type of AIDS-related discrimination inherent in the Florida Food Benefit Trust Plan. I would hope that the legislation when passed, will contain provisions to prohibit AIDS-related discrimination of this nature by the health insurance industry. I do not intend to see PWA sit in the back of the health care bus because plans such as Florida Food Benefit Trust have a discriminatory clause which limits AIDS 7 coverage to a mere $5,000 per year and a total of $15,000 worth of lifetime medical benefits. I would hope the Commission will come forth with a recommendation which sends a clear message to those in the health insurance industry that the exclusion of severe limitations of benefits for AIDS patients will not be tolerated, that AIDS coverage and health insurance plans should be equal to that coverage provided to any other disease, such as heart disease, diabetes, lung cancer and so on. Thank you. CHAIRMAN WATKINS: Thank you very much, Mr. Starkey. I would like to open the questioning this morning from our one resident of the Nashville area, the Dean of Nursing at Vanderbilt University, Dr. Colleen Conway-Welch. DR. CONWAY-WELCH: Thank you, Mr. Chairman. I would like to ask Mrs. Mowery a question, if I may. At the end of your testimony, you seemed to hold out hope that some things have been learned and that some changes might be occurring in your area. Do you think that the next child who comes to the Anderson County School System will have the same experiences that Dwayne has had and do you think that there has been some change? Is there some hope of change that he would be or she would be more protected in terms of confidentiality? MRS. MOWERY: I think that more people would support us if Dwayne would go to a regular school. DR. CONWAY-WELCH: And so, you feel that there has been some education and some change in attitude? MRS. MOWERY: Yes, ma'am. DR. CONWAY-WELCH: Thank you. CHAIRMAN WATKINS: Mrs. Gebbie? MRS. GEBBIE: I will pass at this time. CHAIRMAN WATKINS: Mr. Creedon? MR. CREEDON: I have no questions, thank you. CHAIRMAN WATKINS: Dr. Primm? DR. PRIMM: Mrs. Mowery, in your block, where you live in a small town, do you have neighbors who are sort of reluctant to visit you or is your family reluctant to visit you? I have experienced in .my travels, particularly in Tampa, Florida, and other small towns nearby Tampa where a family may have a family member who is infected with the virus or has AIDS, and people won't come to the block, not only to the home, will not even come to the block. Are you experiencing that in your town? 8 MRS. MOWERY: Yes, sir. There are some children who come and visit their grandmother that lives down below us, and he is real good friends with Dwayne. . He plays with Dwayne all the time. DR. PRIMM: So, you are not experiencing that kind of thing? MRS. MOWERY: No. DR. PRIMM: Also, my family is in the funeral business in New York, and we often ship bodies back to the South to be buried. Sometimes the funeral directors will not take those bodies, and not only that, when that happens, the family to which the deceased would belong would end up being humiliated and sometimes harassed and in many instances fired from their jobs because they had a relative who died of AIDS. Are any of you experiencing that kind of thing in the South? MRS. MOWERY: No. SISTER OF AIDS PATIENT: In our case, I know in our neighborhood when my brother was living with my parents after he was sick, they had trouble in their neighborhood, and then after he died we had to call a couple of funeral homes to find one who would take care of my brother's body. So, it was a concern in our case. DR. PRIMM: Mr. Starkey, do you have any comments? MR. STARKEY: In terms of discrimination of that nature, up until this point, my condition has been on an “as needa to know basis." My family knows, and some members where I work know, but very few. So, as far as the general public is concerned, I was just another person eating at a restaurant or walking down the street. After today perhaps that might change. So, I haven't really felt that type of personal discrimination. My discrimination has come on a different level, and that is the whole thing about discrimination. People with AIDS experience discrimination on many different levels and not just particularly on one level, and I think it, also, goes back to the environment in which they live. I live in an urban environment on the coast. The boys in Arcadia where the house was burned lived in a rural environment. So, I think it goes back to cultural attitudes and things of that nature as to how the discrimination will come out and be expressed. DR. PRIMM: Have the churches played any role that any of you know in trying to defuse or desensitize some of these feelings that you have encountered along the way? SISTER OF AIDS PATIENT: I know in my family, my family is very religious, and my brother was extremely religious, and he would often seek comfort from the priests, but the priests were not very cooperative, and they were not helpful at all, not comforting to my brother or the family. DR. PRIMM: Would you feel then that if some appeal was made to the clerics or the religious community that we would get a better response and maybe some better understanding through the clergy talking to the parishioners and so forth? SISTER OF AIDS PATIENT: I think it would help, and we met one priest who was from Ireland, and he was very helpful, and I know he did a lot of work in New York City with AIDS patients, specifically with AIDS patients. He caused, I think, a lot of friction within the Catholic Church and has since been assigned to be a missionary in Africa because of it. So, that is the church's stand on it. DR. PRIMM: I think the sharing of your experiences sometimes with clergy or with other community leaders certainly might help to defuse some of this discrimination. As you know, people who are my color have suffered discrimination for many, many years, and we have gone about it in a number of different ways, and one way is certainly through the church. So, I feel very strongly that that might be a helpful way to combat the situation. CHAIRMAN WATKINS: Dr. SerVaas? DR. ServVAAS: Mrs. Mowery, you mentioned all the good help you got from Steve Root at the Hemophilia Center. I would like to know if the National Hemophilia Center or Foundation in, I think it is in New York, do they help give you names of other hemophiliac patients in the area who would have a similar problem to Dwayne's where he could make friends and maybe talk to these other hemophiliacs? It is my understanding, if I remember the numbers correctly that of the 10,000 hemophiliac patients who are now AIDS positive, only 50 have had the problem that you have had. The rest have not. Now, we could look up a lot of hemophiliac patients who haven't had the problem, and maybe they could give you some good ideas on how they were able to go to school and not run into what your school district has done. In Indiana, we have Ryan White where we have done a beautiful job of having the whole community embrace this hemophiliac who has AIDS, and I am sure that we could do the same thing with students like Dwayne, if we knew, how to get the National Hemophiliac Association Foundation working with you on that. Could you tell us, do you know the Hemophiliac Foundation people, and what help have they been besides your local, and you mentioned Steve Root; is he connected with the National Hemophiliac Foundation? 10 MRS. MOWERY: Yes, ma‘am. DR. ServVAAS: And have they helped you get in touch with others who haven't had the problem that Dwayne has had? MRS. MOWERY: No. DR. SerVAAS: For comfort or for advice on how to. proceed and how they did it? Have you read about Ryan White in Indiana? MRS. MOWERY: Yes, ma'am. DR. SerVAAS: And could you be in touch with Mrs. White? Would that help? MRS. MOWERY: It probably would. DR. SerVAAS: I was just thinking that if we could get a network through amateur radios, ham radios or things like that, where we could put a network of people, you mentioned that Dwayne is lonely, and if, like at the school for the deaf where they have all the students getting support, we could get a networking of the hemophiliacs who are overcoming the discrimination or have not had discrimination, that we could make your life and Dwayne's much happier and, also, educate your community. That would be my advice, since we have had such a close hand experience with Ryan White and hemophilia in Indiana, and now, everyone loves him, and the school he came from is now saying that they wish they had supported him at the time, but they didn't know, and the state board of health didn't know and weren't advising the school. That is what the school is saying, that they really weren't to be blamed so much because they couldn't get any help back then from the officials because they Gidn't know if they would be vulnerable to attack from the parents for having permitted the hemophiliac in school. So, I really believe that we need more networking and that we could help you a great deal and help Dwayne make a lot of friends around the country who have the very same problen. DR. CRENSHAW: I would like to direct this question to the sister of the AIDS patient. I would love to call you by name, but I understand that you prefer not. Is that right? Okay. How long ago was your brother ill, was it very recently or was it a number of years ago? SISTER OF AIDS PATIENT: He only died this past August, and it was 2 years ago that he had been diagnosed. DR. CRENSHAW: And was it in one of the major cities that -- 11 SISTER OF AIDS PATIENT: Yes, it was. DR. CRENSHAW: So, it was San Francisco or New York? SISTER OF AIDS PATIENT: It was New York. DR. CRENSHAW: Okay. So, it wasn't in a county or a town where we would expect there to be naivete or lack of information. SISTER OF AIDS PATIENT: No. DR. CRENSHAW: Okay, thank you. CHAIRMAN WATKINS: Dr. Lilly? DR. LILLY: I just wanted to check and find out if any of you found any state laws that protected you in any way, shape or form from the form of discrimination that you were suffering from? SISTER OF AIDS PATIENT: I didn't even check into it. MR. STARKEY: I will go ahead and speak. I believe in my case before I was even diagnosed, an individual by the name of Todd Shuttleworth was diagnosed in Broward County, and he was terminated from his employment. As a result, he pursued the case legally, and at that time it was ruled that people with AIDS are covered under the handicapped discrimination law. There was a tremendous amount of publicity in the South Florida area, and I think that struggle that he engaged in meant that I kept my job. I think my employers were well aware of the publicity to the point where they wouldn't go and terminate somebody knowing that there had been a legal battle fought on those grounds. I subsequently inquired with the department of insurance regarding this law as it affected me in terms of the health insurance discrimination, and we have subsequently filed a complaint with the Human Relations Commission of Florida to determine this, if I am covered in terms of that discrimination under that state law. I don't know how other states handle the person with AIDS, but I believe in the State of Florida the handicapped provision offers some protection for a person with AIDS. It is not clear. It is not specified. It is just something that you picked up in the press that you have read about. DR. LILLY: Mrs. Mowery, do you have any comment on whether there were any state laws that might possibly have been overlooked in your case or -- MRS. MOWERY: Yes, sir, the education of the handicapped laws in Section 504. 12 DR. LILLY: Okay. So, there actually have been some provisions that could be interpreted as being helpful. The reason I am asking this is because a spokesman for the Reagan administration has announced that their policy is to leave matters of discrimination to the states in this instance. I am just wondering if the states are actually functioning in a way that is satisfactory for your individual purposes. CHAIRMAN WATKINS: May I suggest that Mr. Jack Derryberry would like to come to the microphone and answer on behalf of Mrs. Mowery? It would be perfectly acceptable to the Commission. MR. DERRYBERRY: Dr. Lilly, as Mrs. Mowery mentioned, Dwayne is, also, learning disabled. He is categorized as learning disabled. So, the protection of the educational for the handicapped law is attached to him, both state and federal. One of the things that she has suggested to you is that HIV positive, ARC and AIDS be included as a specific listed condition under the category of other health impaired in the handicapped laws so that the procedural protections in terms of exclusion from school, testing, evaluation, etc., would apply to any child as this automatically. Tennessee has a very comprehensive educationally handicapped law. I think the problem that the Mowerys have experienced, however, is not so much one of law as order and how society operates. It really wasn't a problem that there were not laws to protect the Mowerys. It is a problem of the laws being carried out and what happens when law and order just break down. DR. LILLY: Is there any interest on the part of the police in offering any protection for Dwayne? MR. DERRYBERRY: Yes and no, and I think I really wouldn't want to go into that too much because obviously that is something that at some point in time in the future could be the subject of some litigation, and I really don't think it would be appropriate to comment. DR. LILLY: Thank you. CHAIRMAN WATKINS: Mrs. Gebbie? MRS. GEBBIE: My apologies for being a little late and missing some of the earlier presentations. I am particularly interested in the interaction between laws which can, in fact, give you legal protection, but, also, attitude, things that happen in the social system which despite the law are still uncomfortable or punitive to a person who might otherwise be protected. I would be interested in comments any of you would 13 | j | have on the interaction between the experiences you have had and media coverage, particularly where we end up with media coverage of fringe materials or materials that proved to be inaccurate. Do you have any specific examples of how that either made worse your experiences or was that, in fact, irrelevant to what was going on for your brother or for any of you? SISTER OF AIDS PATIENT: I think if the media was perhaps a little more responsible, like you said, in reporting, making accurate reports about contracting the disease, I think it would certainly help. You know, at the time my brother was ill, there was really not a whole lot known, and it was still a very paranoid feeling around about AIDS that really affected my brother's care. So, I think if there was more control over the material that is aired, it would certainly be helpful. MR. STARKEY: I would like to say that, in terms of the media coverage I think the media coverage, in my particular instance and Todd Shuttleworth's instance was very good because I think it brought certain items to the public attention. I think as a result of that we have a better attitude of the public. I would certainly like to see the media play much more of an educational role in terms of what AIDS really is and to maybe orienting itself towards more of a positive aspect, as opposed to always playing on the negative aspects, i.e., "AIDS equals death." I, for one, am going to fight that concept as much as I can. I am not going to worry about death until 5 seconds before it happens. I am going to put all my energies into surviving this disease. So, I tend to ignore the press when it kind of comes across with that message "AIDS equals death." But on the other hand, the coverage that I have had personally, from the media has been very good. I think it has served the purpose in bringing a lot of issues to the public mind. So, I have no real criticisms of the press. CHAIRMAN WATKINS: Follow-up, Dr. Primm? DR. PRIMM: Yes. Sister of AIDS patient, I am from New York, and what I would like to know, was this a public hospital or a private institution or would you prefer to allow the name of the hospital to remain anonymous, too? SISTER OF AIDS PATIENT: Yes, I would rather allow the name of the hospital to remain anonymous. Yes, actually it was in three different ones, and the last hospital that he was in provided the best care out of the three. The very first one he was in was a major hospital, a major infirmary, and it was deplorable. It was a nightmare. It was horrible. DR. PRIMM: I don't think we can do very much except for on a general scale in terms of trying to get hospitals and health care givers to change their attitudes toward AIDS 14 patients. If you would talk to me, I do have some influence in the New York area, and I would personally try to speak to hospital administrators or whatever so that they could begin to institute some programs like you have suggested. I think it is really important, but we make only sort of general recommendations, and we cannot be very specific. You have asked for specificity in terms of some of your suggestions. SISTER OF AIDS PATIENT: Yes. CHAIRMAN WATKINS: Mr. Creedon? MR. CREEDON: I would like to follow up on a comment that Dr. Primm made to Mrs. Mowery where he suggested that they might find comfort in talking to a religious adviser or priest or whomever. I wonder if this Commission, Mr. Chairman, could request or urge the entire religious community to take a more active role. I don't know how much the religious community is doing now. I know Cardinal O'Connor personally cares for people, but you know, the pulpit can be a very good forum for getting ideas out to people and for getting them to think in charitable terms about their obligations. This is not something that perhaps should go in the report to the President, but I wonder if there isn't some way that we, as a Commission, couldn't urge the religious communities generally to take this on as an educational effort? CHAIRMAN WATKINS: I think it is an excellent idea. I think that my attendance at the AMA convention on education on the subject of AIDS last week tells me that we have an incredible task in this nation to stop the consequences of ignorance about this disease. Absent a well-educated citizenry, we will lose our freedom and our democracy. I think this is an all-hands evolution in the nation, and certainly the religious leadership has got to come together and ensure that they have the same knowledge that those of us who have been on a very rapid learning curve on this now have gained in only 5 months. Some of us were not all that bright on the subject either, and we have learned a great deal through people like Dwayne and others, your brother, a sensitive exchange of correspondence we have had, and it has made a big impact on me and will make a big impact on the nation. So, I think the religious leadership has got to be involved with all of the health care providers, with all the adults in the society and with the peers who have to work together, and I think that Mr. Creedon's suggestion is an excellent one. We will be receiving the report of the American Medical Association's conference within the next month, and I hope from that, the tentacles to educate the nation will be 15 energized and activated across the board. I think the religious leadership must come together on this, and I will, personally, take on the issue with that leadership. I know who they are, where they are, and I believe we can make an impact from the Commission, without having to necessarily make it a set of hearings. It is just a natural thing for us to do. We have learned a great deal about the importance of education, and even in Anderson County, you are educating people the hard way. We found that, where education was done ahead of time before the first AIDS-related case arrived, it has been a piece of cake. It has been well handled, compassionately, sensitively and sensibly. So, I think that Mr. Creedon has hit on a very important point, and I would hope that the lessons learned out of the Anderson County event have caught fire in a positive way within the State of Tennessee. I would hope through the health and education department of the state under the governor's direction that they would see to it that they are better prepared for the next go-round, much as they were in the little town of Cicero in Indiana when young Ryan White was moved there, and their arms were put around him when he arrived in school. Religious leadership is critical, and I will personally take it on as Chairman of the Commission to try to spark that enthusiasm in the bright leadership in the variety of denominations we have in the nation. Thank you, Mr. Creedon, for that suggestion. Dr. Lee, do you have some questions this morning? Any others on the panel on follow-up? Yes, Dr. SerVaas? DR. SerVAAS: I just wanted to follow up on Mr. Creedon and Admiral Watkins' comment about religion, and De Tocqueville said that if we stop being good, we will stop being great. The thing that he saw in our country was all the churches. In Indianapolis, we have the Damien Center, and it came about somewhat because of Ryan White, and the Damien Center is the Episcopalian Church and the Catholic Church joined together, and I think ecumenical groups now should all join together as Mr. Creedon has pointed out. If you can get the religious groups in your area to call attention in the pulpit and elsewhere, you can do a great deal, and we have therein. I mentioned to you, Mrs. Mowery because Dwayne could talk on the radio, ham radio, and we have put in ham radio equipment so that amateurs can talk around the world to other persons who are afflicted, whatever their reason for being AIDS positive. If you want to write to the Damien Center in Indianapolis, I am sure they could tell you how they got that ecumenical group of religious workers going. I really believe we could help you a great deal by showing you the example of our people in Kokomo, Indiana, who originally had Ryan White, and now, they are pointing out why it was that they were afraid. They are all Wishing they had done differently, but really when it unwinds, you can see that they didn't get any help because there weren't 16 any guidelines at that time. Now, we are getting guidelines, and the state board of health can come in and protect the school superintendent, and so, the school superintendents can go forward. So, I think we all must forgive the original ones and now that we can see that America is good and great and that we aren't mean-minded people at all when we know the facts. Thank you. CHAIRMAN WATKINS: Does anyone have a follow-up question that they would like to ask? Dr. Primm? DR. PRIMM: I just have a comment. I had the privilege yesterday of speaking here in Nashville, Tennessee at the Meharry Medical College, and we talked about community outreach and education and the ways to accomplish that. We, also, talked about Tennessee being in the Bible Belt. I mentioned that I had the privilege, also, a year ago, almost, in Memphis at the Center of the Church of God and Christ to speak to a sea of people, maybe 10,000 people at one of their national conferences about this whole problem of acceptance of this disease entity, etc. I think that what we need is people who will reach out to the clergy. There is a great deal of fear on their part. I hate to keep reiterating that, but I think being the Bible Belt that possibly this area could be convinced through love of God to begin to talk to parishioners in a manner to get them to better understand, and I see the National Congress of Black Churches doing just that. All the churches then, after I spoke in Memphis, began to call upon me to speak at their national conferences where thousands and thousands of people are gathered. So, I think it is a matter of sustaining that effort, through congregants and parishioners to insist that the theologians who run these particular denominations become involved. So, I would urge all of you to look toward that spiritual kind of leadership. CHAIRMAN WATKINS: We want to thank all of the panelists this morning for having the courage and the strength to come before us. Dwayne, you are one of our national heroes, and one day you will look back and say that you were at the forefront of changing the country to one that was more interested in serving others than self. So, you can be very proud, and you can be proud of your mother and family for supporting you so much. (Applause. ] CHAIRMAN WATKINS: Again, I want to thank you, sister of AIDS patient, for being with us. Your input to the Commission was very important, and your brother and others with 17 AIDS are, also, the heroes of our society in many ways. We will change for the better or it will have a fatal impact on the nation as a whole, and we won't let that happen, if we can have anything to say about it as members of the Presidential Commission. Thank you, Mr. Starkey, for taking the time to come before us today and sharing your story with us. We will move to the next panel, now, please? [Brief Recess. ] CHAIRMAN WATKINS: The next panel is on the Extent of Discrimination in the Workplace, Housing and the Schools, consisting of Mitchell Karp, supervising attorney, AIDS Discrimination Unit, New York City; Curtis Decker, Executive Director, National Association of Protection and Advocacy Systems, Washington, D.C.; Ben Schatz, Director, AIDS Civil Rights Project, National Gay Rights Advocates, San Francisco, California; Abby Rubenfeld, Legal Director, Lambda Legal Defense and Education Fund, New York. Thank you all for coming this morning, and Mr. Karp, if you will open with your statement, please? MR. KARP: Thank you. Good morning. My name is Mitchell Karp. I am supervising attorney at the AIDS Discrimination Division of the New York City Commission on Human Rights. With me is my colleague, Katy Taylor, Deputy Director of the Division. We are pleased and honored to be addressing this Commission today. We are really dealing with two epidemics. The first is a medical epidemic. The second, equally devastating is one of stigma and discrimination. We cannot eradicate the medical epidemic without eliminating the epidemic of discrimination. Please understand that what we have to say today is in no way theoretical. This is not an academic study. It is not supposition. It is fact. People with AIDS, people with ARC, people who are HIV antibody positive and people who are perceived to be in any of the above categories, either because they are in a so-called "risk group" or they are the family members or they provide services to people with AIDS are suffering intensely, right now, from overwhelming discrimination. Over and over we hear the same thing from the people who come to us, "Getting sick is terrible, but what has really made my life a living hell is the way I have been treated." The stigma attached to HIV infection affects the quality of health care, the dignity accorded the infected and the willingness of the uninfected and uneducated to reach out for HIV prevention literature. As a result vital opportunities to prevent further spread of the disease are missed daily. This epidemic of stigma 18 and discrimination has three components: fear, misinformation and prejudice. Our written testimony provides further | explanation. AIDS stigma is an interlocking web which draws on many of the underlying prejudices which have long plagued our society. Those who have been hardest hit in this epidemic are often already marginalized by race, gender, sexual orientation, disability, national origin, age or immigrant status. One must always take into account the impact of poverty and the effects of racism when attempting to catalog the toll of AIDS upon those who have the disease. Fifty-four percent of the people with AIDS in New York City are black or Hispanic. Pre-existing prejudice against racial and ethnic minorities further fuels the intolerance typically directed toward people with AIDS. The AIDS in People of Color Report included with our testimony addresses this aspect of AIDS discrimination. Our unit has handled approximately 1200 complaints of AIDS-related discrimination. The number of complaints has risen each year from three in 1983, to nearly 600 in 1987, and if the current rate continues, we expect that number to double in 1988. Many people lost their jobs, thereby losing insurance coverage. Others have lost their homes. People have been denied transportation by ambulance, dental treatment, dialysis, surgery, even oxygen deliveries to their homes. The list goes on and on. Our AIDS Discrimination Report has a more elaborate listing of the types of complaints we have received. Our experience over the last 5 years tells us it is far too late, and the stakes are too high to hope that the states will take the initiative in this area. The Federal Government must point others in the right direction by seeing to it that discrimination issues are no longer raised as an afterthought. Anti-discrimination protections must be made one of the cornerstones of each and every aspect of. this Commission's recommendations. At this point, if we aren't actively deconstructing AIDS stigma, we are fueling the growth of this second epidemic. We bring with us a set of principles, as well as recommendations, believing that the principles are necessary to apply when implementing these recommendations. One, adopt a strong, visible, national anti-discrimination stance; two, make human rights the cornerstone of all AIDS efforts; three, actively deconstruct stigma at every opportunity, (one step would be to drop the current risk group terminology and adopt in its stead the actual risk terminology used by New York City and the World Health Organization); four, consider the entire social context of AIDS - - address the impact of the underlying prejudice and discrimination issues associated with AIDS; five, evaluate 19 all policies that impact on human rights and the social consequences; and six, maintain a global perspective, for to fail to do so distorts the perspective and limits our ability to evaluate and find real solutions. While we included complete recommendations with our written testimony, I would like to highlight just a few of them. The Federal Government must take a strong anti-discrimination stance. This would include appointment of a blue ribbon panel composed of experts to review all policies and programs dealing with HIV-related issues; two, issuance of executive orders banning HIV-related discrimination in federal housing, employment and programs; three, active leadership by the President on this issue, for example, a telephone call to the victims of discrimination like the Ray family where there is national media coverage would assure them that America does not condone such violence; four, use of the federal budget to ensure that AIDS monies are inextricably linked with assurances of civil rights protection. On the legislative front, federal laws must be passed to ensure that all disability discrimination, including coverage for asymptomatic HIV infection is prohibited. This would be similar to the protection currently afforded those who are discriminated against on the basis of race or sex. States and municipalities must be called upon to enact similar legislative safeguards. All efforts to legislatively overturn the Supreme Court's ruling in our Arline must be rigorously fought. Enactment of local AIDS specific legislation must be avoided. Instead, HIV-related discrimination must be included under protections afforded by existing disability legislation, thereby minimizing the additional stigma that such specificity creates. This Commission must stress the need for a nationwide education campaign which includes not only transmission information but accurate information which de-emphasizes risk group terminology. A campaign of public service announcements is, also, important. Finally, we recommend the institution of a reward system whereby inclusion of a non-discriminatory policy statement regarding the HIV infected is necessary for a program's funding to be awarded. Thank you. CHAIRMAN WATKINS: Thank you, Mr. Karp. Mr. Decker? MR. DECKER: Thank you, Mr. Chairman, members of the Commission. My name is Curtis Decker and I am the Executive Director of the National Association of Protection and Advocacy Systems in Washington, D.C. 20 My Association represents over 80 Protection & Advocacy (P&A) agencies in every state and territory of the United States. The P&A System is a federally funded program created by Congress in 1977 to represent, protect, and advocate for program persons with developmental disabilities, persons with mental illness, and recipients of vocational rehabilitation services. As such, we are a nationwide advocacy agency for persons with disabilities. Also, I am here representing the Civil Rights Task Force of the Consortium of Citizens for Developmental Disabilities, an organization in Washington representing over 50 national organizations working with persons with disabilities, advocates, service providers and professionals. Discrimination is no stranger to the disability community, and those of us who have worked in this area for several years are aware of the historical nature of discrimination that results from lack of understanding and prejudice that affects persons with disabilities. I think it is important that this Commission look at AIDS in the larger context of disability experience. We have learned, as we hear press comments and other statements about AIDS, that if you substitute the words "mental retardation, cerebral: palsy, epilepsy or other contagious diseases," and Gisabilities, that stigma those terminologies, and discrimination associated with those statements sound very familiar to us from 20 and 30 years ago. As a result, we have developed a long experience on how to deal not only with service provision but, also, with discrimination, and I encourage this Commission to use this experience, build upon it and expand it, so that it can address particular issues of AIDS discrimination. The P&A Systems are seeing a variety of discriminatory actions throughout the country, not only for our traditional clients, people in large state public facilities for the mentally ill and mentally retarded but certainly those people newly coming into the disability field as a result of AIDS. We in the disability community are all too aware of the tenuous hold that we have on the already existing civil rights framework. I would be remiss if I didn't note the irony of this panel meeting today, talking about discrimination while at this very moment the President is about to veto a major landmark civil rights act that took 4 years to get through the Congress. So, we are very well aware that the gains that we have made over the last 20 years can be often swept away based on lack of understanding and sympathy in our larger society. 21 Congress understood this kind of discrimination 10 years ago in creating the Protection and Advocacy Systen. During the past 10 years Congress has added to that system and expanded it having realized the advantages of having strong, aggressive advocacy services in place so that persons with disabilities can come forward and have violation of their rights addressed in an equitable and quick way. A corollary benefit of that kind of protection is that it serves to prevent future discrimination because most people now are aware that discrimination against people with disabilities will bring swift action from aggressive advocates who are well experienced in disability law. We ask that this Commission consider the P&A type of model that is already in place, and to examine how it can be applied to address these particular issues. We don't want to "unskill" ourselves in the light of this epidemic. In terms of recommendations, I have to echo what my colleague has stated, and add to that list of recommendations the fact that we need strong federal antidiscrimination that would encourage the development of state and local laws. Also, we need to engage in broad public education and make people aware of these laws, not only to protect the individuals who are facing discrimination but, also, to prevent that discrimination. Lastly, we need to develop a national, federally-funded system of advocacy services similar to the existing P&A system so that people who are facing AIDS discrimination can have access to legal representation. We often say that rights without a remedy are no rights at all. Without aggressive representation that will allow these people to access laws that do exist and that should exist in the future, then we really have not given them very much at all, other than paper protection. We think that there is a model in place. We think that there is a possibility through federal funds and demonstrations, through agencies like the Human Resources, Health Resources Services Administration, HRSA in DHHS, the ability to demonstrate throughout the country what good, comprehensive advocacy services could do to not only alleviate personal devastating discrimination, prevent discrimination in the future but, also, help us to move on to the real agenda that we all want to address and that is the prevention of transmission of the disease. I think one of the major stumbling blocks to getting to the public health agenda has been the discrimination that this population has faced. Thank you. 22 CHAIRMAN WATKINS: Thank you very much, Mr. Decker. Mr. Schatz? MR. SCHATZ: Good morning. My name is Benjamin Schatz. I am the Director of the AIDS Civil Rights Project of National Gay Rights Advocates, a San Francisco based public interest law firm. During the past few years, I have received thousands of calls from people around the country who have experienced AIDS-related discrimination. The AIDS crisis has brought with it fear, prejudice, discrimination and violence. The usually fatal nature of AIDS and its popular association with gay men and IV drug users has produced an emotional and political response to a medical crisis. This response can be characterized by what I call the three P's, panic, profits and politics. Let me begin with panic, i.e., fear of contagion. People with AIDS, ARC or HIV antibodies, as well as others considered, "high risk," have been fired, evicted and refused services by businesses and government agencies. They have been denied passage by airlines, barred from schools and forced by real estate agents to disclose their condition to prospective buyers. Unfortunately, there are important gaps in handicap discrimination laws which should prohibit such discrimination. The Federal Rehabilitation Act, for example, exempts large segments of the economy. Enforcement of the Act is notoriously lax. The Department of Health and Human Services has yet to reach a decision about a complaint I filed 18 months ago. State laws are, also, lacking. Some affect only government action, and other fail to prohibit discrimination on the basis of perceived, as well as actual handicap. Here in Tennessee, the state handicap law was amended specifically to exclude protection for people with AIDS, and some forms of discrimination based upon fear of contagion, such as denial of child custody and visitation rights and the leperization of HIV infected criminal defendants falls outside the realm of handicap discrimination law altogether. Those who discriminate have begun to focus less on casual contagion and more on the fear of contagion through contact with infected blood. Restaurants have fired HIV-infected employees, claiming they might bleed into food. Police and train conductors have insisted upon wearing rubber gloves when dealing with "high-risk" individuals. Many funeral homes impose large surcharges before embalming the bodies of people who have died of AIDS. This new form of discrimination is most troubling among health care professionals. In some cities, it is nearly impossible to find nursing homes or dentists who will accept people with AIDS. Some health care providers have turned away 23 patients with AIDS-related conditions not because they fear infection but because they fear other patients will be frightened away. This "fear of fear" justification has been the basis for economically motivated discrimination by employers, landlords and businesses, as well. The insurance industry, too, has responded to AIDS with profit-based discrimination. Many insurers are scapegoating the gay community by denying coverage to male applicants thought to be gay or bisexual. Most misuse the HIV antibody test to screen applicants, even though such testing could lead to discrimination in employment and other areas. At least two studies show that fear of insurance discrimination has discouraged gay men from taking the test voluntarily. Moreover, insurers have consistently failed to provide counseling to tested applicants despite its critical importance. Many insurers are also attempting to deny financial responsibility to policy holders once they develop AIDS. Some have refused to pay for AZT and other drugs by terming them experimental. Others refuse payment to policy holders who showed virtually any medical ailments before being diagnosed. Still others have declared that they will not pay for AIDS-related expenses at all. The profit motive has also led to widespread profiteering: from price gouging by distributors of AIDS-related drugs, to the promotion of costly mail order cures that are never mailed, to the creation of sham AIDS charities, to the marketing of special AIDS disinfectants and home test kits through Tupperware-style house parties. We have seen expensive dating services which offer cards certifying that the member is "AIDS-free" and high-priced testing centers that fail to perform confirmatory testing or to provide counseling. It is in the.arena of politics, however, that AIDS-related opportunism has been most rampant. Politicians have found that AIDS makes headlines, and have used the issue to scapegoat the gay community. To be sure, even repressive proposals may be motivated by a genuine desire to stem the spread of AIDS. Thus, advocates of traditional measures, such as required name reporting of positive test results, contact tracing, mandatory testing and quarantine argue that we should "treat AIDS like any other contagious disease." But to treat AIDS like any other disease is to treat it like something it is not. No medical crisis in recent history has unleashed the fear, hatred and discrimination associated with AIDS. No other epidemic has been so strongly associated with groups condemned by and thus distrustful of 24 the government. Measures which have been used to combat other illnesses may prove ineffective, indeed, counterproductive in fighting AIDS. Coercive measures will create increased distrust of government health authorities among high-incidence groups and lead to denial about high-risk behavior. Implementing costly measures that sound strong but are, in fact, ineffective, may lull the public into a dangerously false sense of security. Nonetheless, serious debate continues about a wide range of repressive measures. Proponents of reportability argue that state health departments have excellent records of protecting confidentiality, ignoring the fact that lists that are now confidential can easily be made public through subsequent legislation. Indeed, secret government lists of HIV-infected persons have been publicly distributed without legislative action in several cities. It becomes even more aifficult for seropositive individuals to trust government individuals with sensitive AIDS-related information in light of the government's own AIDS~-based discrimination in the military, the Foreign Service, the Peace Corps, the Job Corps, the prisons and in immigration. The politics of AIDS have produced other problems as well. Media images increasingly stress "sympathetic" people with AIDS, i.e., children and adults who are heterosexual and white. And though the message has aroused public concern, it has increased the tendency to blame the gay community for spreading AIDS to others, while reinforcing the belief that if AIDS truly were a "gay disease," there would be no need for America to care. As AIDS becomes whitened and degayed through polite image making, the gay and minority communities are being excluded from a decision-making process which until recently few others wanted to join. There are encouraging signs. Polls show that the indifference which previously characterized America's response to AIDS is giving way to genuine public concern. The question is how this concern will be translated into action. As more people are personally touched by a previously abstract problen, those who oppose punitive measures will increase, and pressure for more funding for research and education will grow. Yet the multiplying caseload may also produce more panic, causing the public to blame people with AIDS, the gay community and those advocating " weak" measures like education for the increased suffering. Such panic will be exploited and further inflamed by opportunists who see in AIDS an opportunity for political or financial gain. Should panic prevail, the rights and the lives of those who are most vulnerable may be deemed expendable as we rush to scapegoating and the flag of the common good. If 25 ey this happens, there is danger, not only for those who will die as a result but, also, for those who are condemned to survive. With this danger in mind, I urge the Commission to endorse the four recommendations which I earlier submitted in writing. Those are one, the passage of a broad federal AIDS anti-discrimination and confidentiality law; two, the development of a mechanism to ensure vigorous and expedited enforcement of anti-discrimination laws by responsible agencies; three, the creation of a national AIDS fraud task force similar to that in California; four, the adoption of a strong statement urging the President to create a national climate against discrimination and to include money in the CDC and Justice Department budgets to combat AIDS discrimination. I would add to these a fifth, new recommendation. The Commission must urge as the CDC did last year, that the federal and state governments should prohibit anti-gay discrimination, remove sodomy laws from the books and launch a vigorous campaign against the alarming rise in anti-gay violence. I realize that many of you may be ideologically opposed to such measures. However, the inevitable result of continued discrimination is to penalize stable gay relationships and to encourage the denial, self-hatred and duplicity which are the greatest barrier to effective AIDS prevention. Thank you. CHAIRMAN WATKINS: Thank you, Mr. Schatz. Ms. Rubenfeld? MS. RUBENFELD: Thank you. My name is Abby Rubenfeld. I am the Legal Director of Lambda Legal Defense and Education Fund which is the oldest and largest national lesbian gay legal organization in the country. We are headquartered in New York, and we engage in test case litigation and education all over the country. I. might, also add that I am a Tennessee attorney and a Nashville home owner, and I am delighted to be able to speak to you here in Nashville. My written comments that I provided to you before focus on three different areas, the nature and scope of AIDS-related discrimination, the protections afforded by and the deficiencies of existing legislation and some recommendations for policies and programs to resolve disputes and to avoid discrimination. Underlying my comments is a very keen sense that our legal system is quite ill equipped to deal with the staggering amount of discrimination and bigotry that presently exists in this country, much less what we can anticipate in the future. AIDS has caused a legal crisis in addition to the medical crisis due to the volume and complexity of problems. We 26 RO must begin an intensive effort to respond to this, and we must make some systemic changes in our legal system, and I certainly hope that the recommendations that come out of your Commission can help in that process. In terms of the nature and scope of the problem, there has been, quite obviously, an explosion in AIDS-related litigation and AIDS-related discrimination over the past 5 years. I was an attorney in the first AIDS-related discrimination lawsuit filed in the country. It was in 1983. I was, also, an attorney in the first AIDS-related discrimination case filed under Section 504 which was filed in 1984. At that point, there was basically no literature, no case law, no nothing on the subject of AIDS-related legal discrimination, and that was five years ago. Now, you cannot open a law journal, you cannot go into any sort of law office and not find literature, legal literature on the AIDS legal crisis which is good and bad. Even though public awareness has grown, the volume of problems and the amount of discrimination has increased rather than decreased which points out to me that obviously we are not doing enough education or the right kind of education in our society. Briefly, on protections and deficiencies of existing laws, it is now quite well established that AIDS is a disability or a handicap for purposes of federal and state legislation that prohibits that kind of discrimination. However, that kind of discrimination based on AIDS per se is barely the tip of the iceberg. The vast majority of calls that we receive in my office deal with discrimination based on perceived AIDS, on HIV antibody status or perceived antibody status or on perceived or real relationship to someone who has AIDS or who has HIV infection. The present mix of federal, state and local laws with differing degrees of coverage and varying procedures is insufficient, confusing and indeed, sometimes counter productive to providing protection and relief to people. Here in Tennessee is a good example. The state law as Ben mentioned was amended last year, specifically to exclude AIDS-related discrimination. There is a handicap discrimination law here. It doesn't now prohibit discrimination based on AIDS which leaves individuals in Tennessee who are discriminated against in the private context with absolutely no relief, and it certainly does encourage people to discriminate when they know that they can get away with it. In addition, none of these laws on a federal or state or local level address the underlying issue of homophobia which so often accompanies fear of AIDS. 27 If we are to develop a comprehensive national approach and response to this crisis, we must acknowledge and respond to discrimination based on sexual orientation. If an employer or a landlord or a service provider is prohibited from discriminating against someone because they have AIDS but can turn around and take exactly the same action because they perceive that person to be gay or know that person to be gay, then we really haven't achieved very much or addressed the problem. AIDS is a national problem of immense proportions. If we are to develop an effective response, we must have strong, all-inclusive, federal non-discrimination legislation. We cannot leave this to differing interpretations and different laws in different states. We are a very mobile society here. In New York, you can live in New Jersey, work in New York and play in Connecticut and be subject to different laws at different hours of the day. That is not the kind of system that we need when we are talking about discrimination of the nature and extent that we are here. The current federal law on disability discrimination is too limited in scope and coverage and too little enforced to be effective. As I mentioned before, I was an attorney in the first AIDS-related complaint under Section 504. It was filed in 1984, and it languished before HHS for 2 years before they took any action on it. Our client died before there was a finding of probable cause in that case, and I think the finding of probable cause only came out because of the Justice Department's memo about AIDS. The timing was very interesting. To date, I am only aware of two or three findings of probable cause that have even been issued by Health and Human Services on these complaints. Unlike the broad reach of Title VII which prohibits racial discrimination or sex discrimination or national origin discrimination, the federal disability legislation only applies to federal employees, federal contractors or recipients of federal funds. While the language of the federal law has been interpreted to cover contagious diseases, it is still subject to varying interpretations and varying applications. To the extent that we want to encourage people to voluntarily be tested as a public health tool, such encouragement must be accompanied by strong and clear protections from discrimination based on their antibody status. Such legislation on a state and national level is not enough. To be effective, resources must be allocated to vigorously enforce these laws, and the agencies that are supposed to enforce them must be encouraged to, in fact, act on that. 28 Legislation should provide options of administrative remedies and direct causes of action in court. Administrative agencies need much greater staff and resources so that they can aggressively enforce these laws. The availability of legal assistance would, also, be increasé#d if these laws provided for attorney's fees upon successful resolution of the case. I say that not for the obvious self-interest, since I am an attorney but the reality that doing civil rights litigation is a very risky endeavor for most attorneys, and they will not undertake these kinds of cases unless they know that there is a possibility that they can get paid and be able to pay their own bills at the end of the litigation. Quickly, in terms of policies and programs to prevent discrimination, I think that the most urgent and most obvious issue is to avoid discrimination before it occurs. That is in everyone's best interests. We can only expect the appropriate responsiveness if we provide the basic education necessary to understand what is and what is not risky behavior. To date, there has been a tremendous vacuum in federal leadership on this issue, and I urge you fervently to please understand that and take that to heart and to provide the leadership that has so far been lacking. Also, we must have strong state and federal legislation, and we must have enforcement of that legislation. The Federal Government has done nothing but delay in hearing and resolving these cases, and they have not initiated any enforcement on their own. That must change. Employers will not cease from discriminating, as long as they know they can do so without any repercussions. Finally, we must encourage more attorney involvement in this process in order both to avoid discrimination and to represent individuals once they have been discriminated against. A well-developed policy before the discrimination occurs can frequently help to alleviate fear and to stop discrimination before it happens. In conclusion, I think that we need a two-pronged attack. We obviously need strong and far-reaching federal anti-discrimination legislation. We also need massive education ana federal leadership to avoid discrimination before it occurs. I would like to say, just on a personal note, if you will indulge me for another minute that the legal system is not the place, really, to resolve these problems. As a society, we need to do this before people have to get in the legal system. Just as an example, I want to point out a case that Mitchell and I both were involved in New York, involving a man who was discriminated against by a dentist. He 29 just won the first round of his complaint, and he filed a complaint with the Human Rights Commission in New York, and then he won what we considered to be a big victory in terms of establishing jurisdiction over dentists and other professionals under the New York City anti-discrimination law. The same week that he won his victory, he committed suicide, and I think that that points out how the system is not really responsive to the needs that people have who are discriminated against, and I hope that you can help to change that. Thank you. CHAIRMAN WATKINS: Thank you, Ms. Rubenfeld. I would like to begin the questions with Dr. Primn. DR. PRIMM: You stated that the best way to avoid discrimination is to do something about it before it occurs, and certainly Mr. Decker spoke of rights without remedy are no rights at all, and of course Mr. Karp you spoke also about this. That was a common thread that ran through every one of your testimonies this morning, to avoid discrimination before occurs if we can. I'd like to turn my attention to Mr. Karp and the New York Human Rights Division. Out in east New York, for example, there is something on the books for a program to be established for babies with HIV. The community for this program is to be established is in east Flatbush. There is one block that has organized against the establishment of this program even though there is a need and some of the boarder babies in hospitals even come from that particular community. There was a boarder-baby program scheduled for Queens but apparently the building was burned down. I am wondering what the Human Rights Commission in New York City is doing to be effective in communities like that where we know that programs are being instituted to do some of the things that Ms. Rubenfeld suggested or that Mr. Decker suggested. We need action before the fact, before the community becomes involved in such an uproar. It was reported to me that the people in this one block felt so strongly about it that they began to talk about the mice or rats eating the garbage from this home where the HIV-infected babies would be and then bringing the HIV virus to the other homes in the block, roaches doing the same thing, those kind of nonsensical statements being made. What are you all doing about that? What is Dr. Maxwell doing about that? MR. KARP: As you know Dr. Maxwell is resigning as of April ist, not due to that incident, of course. I think what we are talking about is two things. Step one is to acknowledge a problem. I think it does not do us a service to try and camouflage the issue. We must acknowledge that one of the community concerns is very much related to AIDS. Calling it border babies and not dealing with the issue of AIDS specifically does somewhat of an insult or injustice to the community. 30 Secondly, I think it is important as a policy that we avoid segregated facilities because it does in fact invite that stigma. What the city has done is to set up what we would classify as technical assistance units. The AIDS education department of the New York City Health Department, along with members of the City Human Rights Commission AIDS Discrimination Unit, go out to various neighborhood groups where we have been requested to do so, to provide information: number one about transmission; number two, and that is where the Commission comes in, about the social implications. What people should be afraid of, what they should not be afraid of, and the underlying message that we promote is that AIDS discrimination is illegal. I think what we try to do is to address the misinformation, the fear and the prejudice. Those are the three different components. Unless people feel comfortable acknowledging their fear it is going to operative, it is going to interfere with their ability to understand the routes of transmission. Similarly, you want people to tell you what they believe are the means of transmission. Unless someone tells you that I believe a cockroach can transmit HIV you as an educator are going to be unable to provide correct or be able to correct that misconception. Finally, I think we need to have an affirmative policy that says prejudice is illegal, it is immoral and it is unacceptable. I think that at this point we are operating at a disadvantage in that we are flooded with complaints. Ninety percent of our cases are dealt with through advocacy and immediate intervention. We are unfortunately unable to pinpoint and address every particular brush fire. What we are hoping to do is deal with a systemic policy where if you have the President of the United States getting on radio and television saying, AIDS discrimination is illegal, you have posters in the neighborhood community center, you have church leaders, doctors and dentists reiterating that message that discrimination is illegal, then it will filter down to the various community groups. DR. PRIMM: That is very interesting to me that you jump from the President of the United States to doctors and community groups, bypassing city legislators or city leaders like Mayor Koch. MR. KARP: I included Mayor Koch -- DR. PRIMM: I think it is important that leadership comes from every level of political power in our nation. Unless it comes from a local person, i.e., the city council person or the assemblymen, the senator and the congressman from that District, I think there is very little we can do. Mr. Schatz spoke of politics and profit and of course panic. I think politicians utilize the whole AIDS and HIV issue to make 31 Ps publicity for themselves, particularly at election time. We can turn that right around on them if we had an organized public forum, say sponsored by the Human Rights Division of the New York City. As you know, I work very diligently trying to do this myself. I think we need to target those neighborhoods where myths are rampant, particularly minority neighborhoods, where 54 percent of the people in New York that are involved with this problem are minority persons. I would strongly encourage you to begin to do that. MR. KARP: Dr. Primm, if I may, just to illustrate the nature and the scope of AIDS related discrimination. I have had occasion to do public speaking for attorneys and all different strata of society. I start off by asking people those people that are afraid of getting AIDS to please stand up--a little audience participation. Very often no one stands up and that is not because no one in the audience is afraid of getting AIDS, but rather because everyone in that audience is afraid that if they do stand up their colleagues, their friends will think, oh you must be queer or you be a drug user. It is that level of threshold discrimination that filters down so that when we go into east New York and we set up a community forum people are afraid to cross the threshold because if you come and attend that is tantamount to admitting that you must have some reason to be concerned. I think that what we need to do is have some broad-based approach, a campaign that makes it okay to find out about discrimination, to make it okay to find out about HIV transmission, so that everybody is concerned. It is no longer an "us and them," it is our family, our community, and it is our problem. MR. DECKER: I would like to respond in terms of the need for policy, in place up front, as a means of preventing discrimination. Again, if you look at special education and the education field, where we have had state agencies, state education agencies that have progressively set up statewide policy, offered in-service training to their local school boards, we have not had the kind of experiences you heard about this morning and in previous testimony. In Maryland that happened, and certainly the Eastern Shore of Maryland is no bastion of enlightenment, but because of that state message filtering down to locals with'a lot of good in-service and technical assistance, the children who are HIV positive have been able to be integrated into the school system with very little problems, and in neighboring Virginia, it has been a nightmare because every school board has been left to their own devices, and have usually had to deal with the problem when they were faced with a specific situation. So, if we can develop some kinds of policies in a variety of state service areas, we are going to go a great way to prevent this kind of discrimination. 32 1 ! MR. SCHATZ: May I just add to that that in addition to punishing the bad guys and educating those people who haven't yet been good guys or bad guys that I think it would — be helpful to have positive reinforcement for those who have behaved responsibly. For example, if the President were to offer an award to some of the corporations like Levi Strauss or Chevron or Bank of America that have affirmatively taken steps to educate their work force and to prevent discrimination, people can say, "Oh, there is something in this for me, too." They might not be motivated entirely by altruism, but whatever it takes to get the job done, that is something that I think we need to do. We should have positive role models of those who have been fighting discrimination and ignorance. DR. PRIMM: In closing my questions out, I would like to compliment certainly Mitchell Karp. I have served on panels with him and spoken about issues with him over the last 2 or 3 years, and the job that you all are doing in New York is really commendable. I want to say that and say that all of you in terms of the issues you put forth here today are really important to me, and I commend all of you for your efforts in trying to assure less discrimination and fewer problems for people who suffer from this HIV. MR. KARP: Thank you, Dr. Primm. CHAIRMAN WATKINS: Dr. SerVaas? DR. SerVAAS: I, too, want to commend you and Mr. Schatz, I particularly like your idea of awards to the communities and people who have done a good job of showing that we are good people and that we can learn, and we do want to learn. I would like to address a comment to Mr. Karp about discrimination. I don't know if all of you remember, I am older than most of the panel members, and I don't remember this President, but there was a US President, I understand, when cancer. People did discriminate against those with cancer, and I think looking back in history will help us. This President had to go out on the Potomac in a yacht with a surgeon to have his cancer surgery, didn't he, because of the discrimination of the day. I think that it would give you hope that we no longer feel this way about our cancer patients, and we will just do it much faster with AIDS than we ever did in cancer. We are working on it, but you mentioned something, and I maybe could help give you some comfort when you say that some of your people didn't get oxygen delivered to their homes. 33 I just happen to have many, many letters from people and one sister I remember from Peoria, I remember her brother was suffering from emphysema, and he was chained to, literally, all of the emphysema patients who were being warehoused in this VA hospital, were chained to their bedsides. This was because at the end of the month they would run out of money, and they simply couldn't get enough oxygen so that they would have portable oxygen in their noses to go to the bathroom, and they would have to use other means to do so because they had wall oxygen only, at the end of the month, every month in Peoria. Now, this is true in other hospitals, and I hope that the Admiral's concern about health care delivery for all kinds of problems will be brought about as something good that comes from what we are learning in AIDS. Do you think you can help get attention to oxygen delivery for all kinds of patients? MR. KARP: I think there is a difference and a very significant difference between not having oxygen delivered because you are out of funds or because there is a backlog and having an oxygen company come to the door, meet someone on the stoop and say, "Hey, that person has AIDS," and have that person turn on their heels and say, "I am not crossing the threshold because I am going to get AIDS if I go into that apartment." That is a very different consideration and type of incident from the type that you are alluding to. Both may be equally devastating ‘to the person who needs oxygen, but certainly when you have the stigma and the fear, then it takes someone like the Human Rights Commission to get on the telephone and to call the oxygen company and say, "Look, what you are doing is illegal," and we are fortunate in New York that we can say that. I don't think that Tennesseans, unfortunately, are in that position where they can get on the phone and say, "What you are doing is illegal, and if you continue this policy, we will intervene as a city, as a state entity and bring a lawsuit." When time, money and attorneys are brought into the act, sometimes people reconsider their policy, and we are fortunate that we have been able to aggressively use the law to intervene and to act as mediators to eliminate much discrimination, but there is a difference between a discriminatory response and an economic or administrative problem. MR. DECKER: Dr. SerVaas, I would respond that, and I would agree; however, I do think one of the impacts of AIDS is to expose the inadequacy of our entire health care system and our system of protection of rights for all people with disabilities. I think if we can address discrimination through AIDS, we are going to impact on the broader disability population. So, I would encourage you to pursue that approach. CHAIRMAN WATKINS: Dr. Crenshaw? 34 DR. CRENSHAW: I concur with what I have heard from the rest of the panel members thus far on the importance of protecting the dignity and the rights and the quality of life for individuals who are infected. I think that another impact of the AIDS epidemic is going to be as you Say, to force us to deal considerably better with death and dying in health care setting and in society in general because we even have cancer patients who are still shoved in this modern day and age. When we are protecting the civil rights of people, you have my full support. There are some areas where I worry that with the best of intentions we end up protecting the civil rights of the AIDS virus, ana I need some reassurance. I will spell out some of the things that concern me. We would think the bathhouse issue would be, if you will excuse the expression, dead and gone today, and yet in San Diego we are having a battle supported by the ACLU and gay activists. We had two new bathhouses open last year. We have five in operation, and when the County Board of Supervisors tried to shut down the gay bathhouses through various means just recently, they were accused of being against civil rights and gay bashers. I, personally, cannot think of any more successful gay bashing in this day and age of AIDS than open bathhouses. So, there I have one concern that in trying -- and you, Mr. Schatz, mentioned the opportunism that takes place, and I think it is bilateral in that the economic and vested interests of businesses such as these get protected. I, also, would be really interested to hear what the current position is for prostitutes which I guess is a bit of a stretch when we are talking about workplace but, indeed, that is a workplace issue, who are known to be infected, go back on the streets and have legal support in protecting their right to continue to spread the disease through sex. I heard you, Mr. Schatz, mention the hope for the removal of the sodomy laws, and between two healthy people that is not a fatal health risk of any sort, but if one is infected, and one isn't, I am curious what your position would be there. So, I would appreciate each of you perhaps making a brief comment on what the current vision of sexual civil rights is and where the intervening points in preventing sexual transmission of the AIDS virus exist in your mind's eye. Thank you. MR. KARP: I would like to jump in. I think that there is a fundamental principle that runs through each of your concerns. When we talk about transmission, I often like to say that it is not who you are, and it is not what you do that counts; it is how you do what you do that matters. So that when 35 we talk about HIV transmission, we can talk, for example, about a prostitute or a professional sex worker who uses condoms all the time, and we then compare that person to a college coed or you know, a recently divorced woman who may have four sexual partners throughout the year and does not think of using any protection for infection control. We don't think about that woman who is having four partners a year as being a vector of transmission or being a risk person. We think of the prostitute as being a "risk" person when, in fact, in most studies showed that it is not the sexual activity of the prostitute that is at issue. It is the intravenous drug use, and that many female prostitutes who are, in fact, professionals, know that if they get pregnant, it is a risk to their business, and if they get sick or infected it, also, is a risk to their business. Therefore, they have the greatest incentive to use condoms regularly. In fact, many prostitutes have been hired by health departments to conduct safe sex workshops to demonstrate sophisticated techniques of putting on condoms without their clients even knowing about it. So, when we make a response that says, "Prostitutes," we are falling into that trap of saying that it is who you are that counts, and we want to focus on how you do what you do. Similarly, one can be a gay man who goes toa bathhouse regularly and has 1000 sexual partners but engages in such activities only with use of a condom or engages in activities where there is no exchange of body fluids, and yet, I can be somebody who has a wedding ring, two children in school and once every 4 or 5 years go to some bar, go to the street, go anywhere in the world and pick up a man and have unprotected anal intercourse, and yet if the two of us are brought into court, who will the judge order to take an HIV antibody test? It is not who you are, because the mere fact that someone is homosexual: doesn't tell us anything, and it is not even what you do because I can have 1000 sexual partners but not exchange body fluids. It is how I do what I do, and it only takes one incident of unprotected sexual activity to engage in a transmission of HIV. So, we have to incorporate that into our understanding. DR. CRENSHAW: So, does that mean that you are still in Support of bathhouses being open, and it is a question of education? MS. RUBENFELD: May I jump in and say something about the bathhouses because I don't know that we are addressing that? I think that we are not going to stop sex. I mean people have tried to do that for centuries. We are not going to stop sex. If you close the bathhouses, the people who go there to engage in whatever sexual behavior they engage in, they are simply going to go to other places to engage in that behavior. I think we need to recognize and accept that as a reality of our society, and I think the issue is what Mitchell is Saying. We need to control the kinds of sexual behavior. Control is the wrong word. We 36 need to help people to engage in appropriate sexual behavior where they are trying to protect themselves, and the bathhouses, whether we like it or not are a gathering place, and they are a place where we can educate people about what is safe sex or safer sex, and how they can protect themselves. If we don't educate them there, they are still going to go out to a public park; they are going to go somewhere else, go to their own home and engage in the same activity unprotected without knowing what risks they are taking. I think you, also, when you think about this issue, you have to acknowledge the fact as Mitchell mentioned that, because our society discriminates as it does, against people based on their sexual orientation or perceived sexual orientation, there is a tremendous stigma here attached to being gay or being identified as being gay, and consequently, many people don't want to identify themselves as gay. There are a tremendous number of people in this country, particularly men who I would identify at the very least as bisexual, who engage actively and regularly in same sex homosexual activity that may very well be unprotected sex and then go home to a wife or girl friend. Those are the people that we need to reach about HIV transmission, and one of the places to reach those kinds of people is at a bathhouse, at a place, a public place where they are going to, where we can give them literature and educate then. Some of the bathhouses that have been closed in New York were the absolute best places to reach people and educate them about sex. This is a difficult issue that all of us have struggled with, and you know, it is hard to be cast in a position of defending the right to go engage in sex in a bathhouse. It is a foreign idea to me personally. At the same time, I think we have to look at the bigger picture and the opportunities that are presented to educate people and realize and accept that that kind of sexual behavior is going to go on regardless of whether those bathhouses are open. I, also, want to throw in one thing about sodomy while I have the microphone. It is hard to get the microphone with all these lawyers, and I might add all these men, but criminalizing private sexual behavior is the absolute worst way to try to stop the transmission of HIV. I want to point out to you that the American Public Health Association filed an amicus curiae, a friend of the court brief in the Supreme Court case that dealt with sodomy law 2 years ago, Hardwick versus Bowers. We filed an amicus brief on our side saying that private consensual sexual behavior should not be criminalized, with the purpose being to try to stop the spread of AIDS, that was the absolute worst way to try to do that. So, I think that the public health community supports the proposition that we are putting forth to you that we don't need to criminalize this behavior. In fact, we need to decriminalize it so that people can come forward and be educated and do no have to go into the closet and go underground. MS. TAYLOR: I was just going to pick up on some of the points that Ben mentioned. I am Katy Taylor. I am Deputy Director of the AIDS Discrimination at the New York City 37 a Commission on Human Rights. I think that AIDS does raise very complicated issues, and unfortunately, many of the issues that we need to analyze are so laden with misinformation and stereotype to start out with that to get an accurate reading you have to look carefully. This issue doesn't lend itself to simple or immediate solutions. So, for example, one thing that history of sex experts will tell you, the one thing that they all agree on is that shutting down brothels, attempts to shut down bathhouses have never made a bit of difference in terms of sexual activity. That is the one thing that they agree on. All it does as was said before is drive it underground, move it into the street, for example, but I think that the same thing is, also, true when you look at prostitution. There is an immediate equation in people's minds that is essentially unchallenged that prostitute equals disease. If you actually look into it, the government studies going back through the sixties and seventies, less than 3 percent of sexually transmitted diseases have been linked to sexual professionals. For years it is the amateurs, not the professionals who have been responsible for the spread of sexually transmitted diseases, and yet the automatic assumption that prostitutes are a source of HIV transmission is, I think, just taken as fact. It has been brought up before, but the point here is to really come to an understanding of things, you have to do a careful, careful evaluation and then weigh that against everything that you are looking at. The public health versus civil rights myth which we are up against so often is a continued red herring that I think we have to avoid. MR. DECKER: I would, also, like to caution against confusing the failure of our criminal justice system to deal with issues, such as prostitution with civil rights protection. I think there is a danger of people trying to move all the issues together in one lump and say that when you talk about civil rights protection you are talking about somehow protecting prostitutes. I want to deal with that issue, but I don't think that is what any of us here is talking about in terms of expanding existing civil rights protections based on handicap to a population that is clearly being discriminated against. DR. CRENSHAW: That, I think, is an important point, and I appreciate it. I want to make very clear that the non-professional spread is one that concerns me the greatest and that few people appreciate, but since we are focusing on workplace issues I was purposely ignoring that one for the moment, but I did want to add that I wouldn't agree with you that all sex experts agree on the points that you made because as past president of the American Association of Sex Educators, Counselors and Therapists, there is really a debate on that point, and we are still trying to find our way on what works best. One of the things that really troubles me is I hear over 38 and over an oversimplification of gay sexual life style, assuming that they will all run to the bushes if the bathhouses are closed. I don't happen to believe that is true, and I don't think that is the caliber of the majority of people who do attend the bathhouses, but I would like to suggest that maybe we are overlooking the fact that if you can make rapid, high intensity spread of the disease more inconvenient by not having an available playground where they can go, aS we are trying to get information to all individuals, it could help in our efforts. I do worry about that, and from what I understand the position still is that these are places of education, and that is what I wanted to be brought up to speed on. MR. KARP: The public education aspect, I think that when we are talking about the voluntary contact tracing, we are talking about notification of partners. When we are talking about individual responsibility, that has a direct tie in to the existence of sodomy statutes. As long as people are afraid of letting others know their identity for fear of repercussions, be they criminal or social repercussions, we will sever the opportunity for interpersonal communication, and all of us are in agreement that what will best end this epidemic is if I care about the person next to me who I may or may not be engaging in some sexual intercourse with. MR. SCHATZ: Yes, I just wanted very briefly to touch on the sodomy issue which you asked about. I think it is very clear that if what you are doing is a crime, then you are not going to go public and say, "I want to be educated about this crime I am committing." It is a crime that sodomy is a crime, but that is a fact. I think you alluded to sodomy between infected people and the fact that it is not dangerous, and I think that the possible implication of that is that therefore sodomy laws are okay for people who are infected, but the purpose of sodomy laws--no, I might be wrong. DR. CRENSHAW: Don't put words in my mouth yet. MR. SCHATZ: Okay. No, it is a possible implication. I was being cautious. I think that you have to keep in mind that the sodomy laws don't say, "Sodomy without a condom." They just say, "Sodomy." They don't say, "Sodomy, but only if you are infected." Very often they cover oral sex, and you know the whole issue there, and I think it is just important to realize that those of us who are gay, those of us who are gay men who love other men are not going to stop engaging in sexual activity, and the key is to how to do it in a way that is going to keep us alive. DR. CRENSHAW: That is what I hope for, too, and what worries me is I am not expert in legal aspects or issues. I 39 don't want to tangle with those on the sodomy laws, but I really do worry a lot given what the Surgeon General says, what we have seen about the failure rate of condoms with anal intercourse that if some attention isn't given much more aggressively by people such as yourself to the dangers of transmitting the disease and the issues of sexual rights and human rights. I don't think civil rights have infected against public health, but the civil rights of everybody, the healthy and the ill. We need your help, and I would really appreciate seeing a stronger stand taken on this particular position, not whether these laws are legal or illegal, just the health issue of an infected person participating,in this behavior with an uninfected person. So, I make that plea. Thank you. CHAIRMAN WATKINS: Let us move on to Dr. Lilly. \ DR. LILLY: I think you are asking for’a little more education here, Dr. Crenshaw. I think that is what we are all about here. I think one of the comments that has been made this morning, I should say that every one of you made comments that I rapidly jotted down notes on here. So, I have about 16 questions for each of you before I relinquish the microphone here, but perhaps I will take pity on you and go a little bit more gently, in particular with respect to what Dr. Crenshaw was talking about. One could refer to something that Mr. Decker said on the obstacle to preventing HIV transmission that is represented by the potential for AIDS-related discrimination. The two things that I was going to ask questions on, you already talked about them a great deal, and I would just like to sort of reopen the issues to see if any of you has any residual thoughts. One of them is the question of federal legislation as opposed to leaving it to the states which is what Secretary Bowen has suggested a few months ago in enunciating what I take to be the official administration policy on the question of federal legislation. He allowed as how this is probably best left to the states which leads me to remember that we decided sometime ago that that was not really working very well with respect to race discrimination, and that something needed to be done on the federal level. I am just wondering what your reaction to that is, and then the other thing that I am interested in is this question that you have already touched on to a considerable extent of the interrelationship between anti-AIDS discrimination and anti-gay discrimination which strikes me as something that a great deal of attention needs to be paid to. This Commission has already gone on record as feeling that a great deal of effort and attention needs to be paid to the problem of IV drug abuse, since it interacts with the problem of AIDS so strongly. It seems to me that that type of thinking might, also, be applied to the interaction between AIDS-related discrimination and homophobia. I would like to 40 give you an opportunity to say more, if you have further thoughts. MS. RUBENFELD: If I could start, probably all of us want to say something on that, but in terms of the federal-state breakdown one only needs to look to Tennessee as a state where the state law was amended, and now, leaving it to the state means there is no protection, and I can assure that there are numerous examples of AIDS-related discrimination that are occurring here in Tennessee. Just the ones I hear about, you know, that is probably the tip of the iceberg. So, I think that we are talking about something that is totally ineffective, and as you pointed out, was also proven to be ineffective when we dealt with other civil rights issues over the last 25, 50, 100 years. There is a reason that there is federal legislation to prohibit discrimination based on race and sex. There is a reason that those laws cover private discrimination, and we need to look at those reasons and look at what is happening now in terms of AIDS-related discrimination and make the obvious analogy and correct the deficiency in the law. I think that it really begs the question and avoids the issue, and is basically politically motivated to say to simply leave it to the states. That is not going to respond to the crisis, and it is not going to help anybody in our society, not just the victims of discrimination. It is not going to help our society as a whole to allow that kind of discrimination to continue and in terms of anti-gay discrimination, there is no way to separate AIDS discrimination from anti-gay discrimination, and this is a disease that has disproportionately impacted on the gay community. I mean that is the reality of it. That is what we have been facing for the last 8 years, and now that the disease has been discovered by other people and that Masters and Johnson are talking about how it is spreading so horribly among heterosexuals; now that we are finally aware of the reality that the disease has, also, disproportionately impacted on the minority community. We cannot ignore the fact that the disease has hit gay men, that it has had the impact that it has had, and that gay men are dying and have died in tremendous numbers and are being subjected to discrimination as a result. What we see in my office is not simply causal discrimination based on AIDS but it is based on that you are a gay man, and therefore I know that you are at risk for AIDS, and I want you out of here. It has nothing to do with somebody's actual antibody status. It just has to do with the fact that they are perceived to be gay, and we need to address that as a society. We might have different beliefs about the rightness or wrongness or causes of homosexuality, but people are dying and people are being subjected to horrible discrimination now, and we have to put aside those kinds of differences about moral beliefs and do what is right in terms of discrimination. You don't have to endorse 41 gay rights. You don't have to say that you support homosexuality, but you do have to take a stand against discrimination, debilitating discrimination based on sexual orientation, and I think that you all as a Commission need to address that and not avoid that issue. I think you have done a commendable job, a wonderful job thus far with what we have seen publicly, with what your Commission has done, but now you are dealing with much more difficult volatile kinds of issues, and I think that you need to really take them head on and respond. MR. SCHATZ: I agree with everything Abby said and in terms of handicap discrimination laws on the state level, I just want to point out, also, that many of the state laws only deal with public employees or only deal with employment. They don't deal with housing or public accommodations, etc. So, there really are major gaps in terms of the state laws that just simply are not going to take care of the problem. In terms of the issue of homophobia, I think it is really translated in a lot of ways, and this is one of the touchiest issues. I think that it is one that is somewhat frightening to deal with. I think it was manifested in the early federal response or shall I say, "Non-response" to the epidemic, and this issue has probably been raised before, but it needs to be raised again. It is just that the perception that this was a disease that affected people that, well, maybe some of us don't really care about anyway was responsible for the very slow start in terms of funding. My concern now is that both the gay community and the IV drug community are being viewed as vectors, so that people now care about AIDS because we are vectors, and we might spread it to other people; so that, there is concern now about IV drug case load, and it is not so much because we care about these people, and we think it is a shame that they are dying, but they are going to spread it to their babies, they are going to spread it to their sexual partners, whereas they are people, too. The gay community, we are people, too, and we are dying, many of us, and I think that I would like to see some acknowledgement of our own intrinsic value not as vectors but as human beings who are suffering. I think, also, that is manifested in the way that we have gotten people to care about AIDS. The way we have gotten people to care about AIDS is to say, "Hey, AIDS is not a gay disease. You should care about AIDS." The implication of that is, well, if AIDS were a gay disease, there would be no need to care about it because it would be only gay people who are dying. I think, also, in terms of some more tangible specific examples that we are seeing increasing problems now in terms of employment discrimination in which employers do not want to hire gay men or men whom they think are gay because the reasoning is: "some of you may develop AIDS and then our health care costs are going to go up, and we don't want that to happen. So, we don't 42 want to take that risk. So, we don't want to see you; we don't want to have you in the workplace." So, that is AIDS-based discrimination, but it is questionable at best as to whether that kind of discrimination is addressed by handicapped discrimination laws. I think some courts would find that it was; some courts would find that it wasn't, and that is the kind of thing that necessitates a uniform national policy. Finally, I want to agree with what Abby was saying, that you don't have to endorse homosexuality to prohibit discrimination; just as in terms of religion, you don't have to endorse fundamentalist Islam to say, "There is freedom of religion." You say, “Everyone has the right to believe in their God the way they choose to," and I think similarly everyone has the right to love, if they are not hurting anybody else. I think it is very important to get away from the notion that supporting civil rights legislation for people who are gay means that you think that what they are doing is just wonderful. MR. DECKER: I would comment on the argument in support of a national federal statute banning discrimination. I think it does lend itself to state implementation. In fact, most state handicap statutes track the Section 504 two-tiered system of protection and use that kind of definition that they glean from the federal mandate. Secondly, in terms of actual enforcement, many people at the state and local level would much rather use human relations commission administrative procedures and other local courts as a place to find a remedy than to go through cumbersome federal litigation. So, in fact, by having a strong federal statute, you are going to encourage the development of good state statutes and try to fill the gap that you heard mentioned that exists and, also, I think, encourage people to use a variety of remedies to try to address the problem in the most efficient and least costly way. So, I think the way to get to Dr. Bowen's idea of state control is to have a federal mandate that directs the states to develop these kinds of policies. MR. KARP: Dr. Lilly, I think that I would not want this Commission to get the misconception that it is an either/or issue. What we are really talking about is a coordinated response by all levels of government, as well as private industry and communities to address this very pernicious issue of AIDS-related discrimination. Up until now, and I think this is also important, the New York City Human Rights Commission is the exception, it is not the rule. Our experience should not be extended or generalized to other communities or states, but I believe that what has been sorely lacking has been federal leadership and more importantly what has made our job more 43 difficult on the local and state level when we review the federal response is that when the Justice Department issues a memorandum saying that discrimination based on fear is warranted, when there are a series of Helms' amendments seeking to limit the scope of AIDS education and send out a message that we don't want these civil rights and that it is civil rights versus public health, it makes it more difficult on a local level when an employer is called, and he says, "Look, hey, I watch television. I know. I can do whatever I want," and suddenly we are left in the position of having to justify saying, "Well, it may be okay under federal law, but under city law, it is not." What we are trying to do is coordinate. I don't think the Federal Government will ever replace the locality in terms of its immediate response, but what we are talking about is a team approach. We are talking about funds. We are talking about active enforcement. We are talking about a legislative mandate which is mirrored on a local level, so that as a result, when somebody calls up, they say, "Oh, gee, I have heard this message repeatedly. Now, I think it must be time for me to re-evaluate my policy and my own stance in response to discrimination." Remember the local people are the ones who have the closest contact with people with AIDS (who are the experts in this area), and it is the community-based organizations (those who can respond most immediately), who will be most effective in addressing discrimination and eliminating discrimination before it actually occurs. So, it is not an either/or, but what we are saying is that at this point many of the localities have suffered because of the lack of federal response or the federal negative response to what is noted on all fronts as a growing, pressing problem which impedes the work of public health officials, of education experts, of everyone trying to curtail the spread of HIV transmission. DR. LILLY: I would just like to thank you for your work in this area and for the clarity of your presentations this morning. CHAIRMAN WATKINS: Mrs. Gebbie? MRS. GEBBIE: The title of this particular panel is the Extent of Discrimination. It is easy to talk about the remedies, and lots of ideas about those. With public awareness of any condition, you suddenly find out more about it. I can draw examples from public health issues where the actual incidence of a condition is dropping in the community but our reports look like it is rising, just because the reports are coming in, and that causes some confusion. You have all talkea about the role of education, the fact that law alone isn't going to solve this problem, and it is education. Some people feel like we have done a lot of education about all these issues related to AIDS. Can you comment on whether what we are seeing now in the extent of the cases of discrimination which you are talking about, is based only on a rising awareness, or whether 44 the actual occurrences of discrimination against people with AIDS, people perceived to have AIDS, people perceived to have something that makes them at risk of AIDS are still increasing? MR. DECKER: I want to change hats for a second because I, also, serve on Governor Schaefer of Maryland's AIDS Advisory Council, and I know of no other issue where the Maryland Dental Association and Maryland Association of Morticians have come forward before the Commission and practically begged for the ability to not serve people and to turn them away totally and go through incredible justification about how they are not trained and how they don't have the education or the equipment to do it. I cannot think of any other issue where an entire profession would beg to get out from under the responsibility of serving their professional responsibilities. Certainly in the field that I work in, we see the whole issue of housing for people with mental retardation, mental illness stop in its tracks as soon as it is announced in the paper which has happened in a couple of states like Delaware; if it is a person who is HIV positive in the facility or a person with mental retardation, attempts to move those people from an institution into the community are always challenged. So, I think that certainly the awareness is there, and we are hearing a lot about it, but I think there is a reality underneath that awareness that it is a serious invidious problem. MR. KARP: Let me respond to your inquiry by saying, "Yes and no." Yes, in some instances, the more education we do, the more we see a reduction in the areas of discrimination. One example would be funeral homes. We have found that 2 years ago there was only one funeral home out of 500 in New York City that was willing to be listed as a facility that would bury people with AIDS, and that is a tremendous problem in a city that had a rising death toll. The Commission on Human Rights filed three complaints against funeral homes. As a result of that, we were able to talk to the Metropolitan Funeral Directors Association and educate 200 funeral home directors. What we were able to stress to them was that if they were concerned about only handling people who had a red tag because they died ina hospital, they were doing themselves and their families a disservice. Obviously if I die in a car accident or if I die of suicide, my cause of death will say, "Suicide or car accident," and it will not say, "HIV infected." Once that information filtered down, suddenly they realized the need to adopt universal infection control procedures across the board. So, then we saw a reduction in the area of funeral home discrimination, and more funeral homes were willing to be listed, but simultaneously we saw an increase in the area of dental care, refusal of dentists. 45 We have the number of people with AIDS continuing to grow so that the number of people who are going to be subjected to AIDS-related discrimination is going to continue to mount, and we have on the one hand employers, law firms, personnel directors calling us up, saying, "Tell me what to do and what I should consider in formulating my policy about AIDS-related employees or employees with AIDS-related infections." That tells us that we are doing our job because they are avoiding discrimination, and then we get tons of phone calls from health care institutions, from ambulance drivers and others. The face of discrimination shifts as the area, and we are always trying to unfortunately, run after the fire truck and put out the brush fires. Where we can be most effective is where we can identify areas of systemic discrimination, target them with repeated education. It is not a one-shot deal. Any of us who have ever worked in the education field, know that you have to present your message, reinforce your message, tell them what you have just told them and then come back 6 months later and say, "Do you remember what I told you? I am going to tell you again." I think that that is the type of campaign that we have to undertake. It is growing. Our numbers are growing annually. We double annually in the number of complaints. Part of that is the message is getting out, while in years past, people just said, "Well, I will just suffer the discrimination and not do anything about it." Remember, we are dealing with people who have catastrophic illness, tremendous financial burdens and emotional considerations. For any of those people or their family members to pick up the phone and say that in addition to all this, I am still willing to let you know that there is some discrimination, we are only touching the tip of the iceberg with that problem. We find that each person with AIDS often has multiple incidents of discrimination to report. MS. RUBENFELD: I, also, want to add or say something about the suggestion that we have done a lot of education. I think as a society we have not even begun the task of educating. Within the gay community, yes, we have done a massive amount of education for gay men -- within certain parts of the gay community, I should say -- on some of the major metropolitan areas, but as a society we have not done that. Gary Studds, and a few people, a few good souls in Congress have sent out the Surgeon General's report, but where is the national mailing to go out to everybody in this country to educate people? Money has been allocated for that, but no mailing has taken place. The date continues to be put off. You know, where is the President giving a public statement? We are a society that is controlled by the media. Where is the President being on the national news or giving a national press conference or just making a national public statement about AIDS or where is the President taking in the boarder babies that we talked about before? I mean why put them in Harlem or in Bedford-Stuyvesant? Let us put them in the White House and show people that there is not any reason to be 46 afraid of doing that? I mean how much money would it take to do a press conference nationally? The money is there to do the mailing, and we are not doing it. So, I think that there is some fundamental problem in how the Federal Government has chosen to respond as opposed to any other sort of solution or any other part of explanation for that. Unless we are willing to take on that task and to start to educate people and not to just leave it to the gay community or to the minority community to start to educate itself, we are not going to reach people. We are not going to be able to achieve any results. MR. SCHATZ: I want to answer your question by saying that I think it depends on the area. I think in terms of my three P's, panic, profits and politics, I think in terms of panic having to do with casual transmission, I would say that perhaps the per capita ratio of discrimination is decreasing although the numbers are still increasing. That is my own personal experience in terms of my phone calls. In terms of panic having to do with concern about blood-~-you know, transmission through blood, health care provision, etc.--I am getting more and more calls about that. In terms of the areas I outlined in terms of profits--you know, economically motivated employment discrimination, insurance discrimination, profiteering, etc., which is not technically discrimination but is still victimization--that is tremendously increasing. As for the politics of AIDS, if someone is a politician who doesn't have a lot of creativity or intelligence and wants to get headlines, the best thing for him or her to do is say something about AIDS. And they will get more headlines, the more outrageous the things are that they say. So, that is a fact and it is not helping in terms of solving the problem. , I also want to agree with Abby about the critical importance of and the lack of, education. There is this myth out there that the gay community is educated. I think that, again reflects what I was saying earlier about the perceived expendability of the gay community. The gay community is not a static phenomenon. There are people who are 16 and 19 and 45 who are continuing to come out or determine that they are gay and who have not had the access to the education that those of us in areas which are organized have been able to get. So, I just want to put in a plug for that, as well. MRS. GEBBIE: Thank you. My other question, again, addressed to all of you, but taking off on something that Ms. Rubenfeld said that probably struck "fear in the hearts of many of your listeners" which is we need more attorney involvement in this problem. There are a number of folks who would see that as very counter productive. Several of you have alluded to things that attorneys do other than file lawsuits that are helpful. I think it would be helpful to further understanding both the scope of the problem and some of the scope of potential solutions if 47 you could talk about that role attorneys play outside of the courtroom in handling the kinds of discrimination you have been talking about. MS. RUBENFELD: I want to say that I agree with you, and I think that in many instances, having more attorney involvement can be a problem. That is an unfortunate thing to say, but attorneys are like other people in terms of AIDS, and they need to be educated, as well. The American Bar Association is working on some educational programs for judges and lawyers, those kinds of things, but I think that lawyers have this mythical place in our society, and a lot of people really listen to lawyers, and if lawyers say the right things to people, I think that that can have impact. I am talking about economic realities of AIDS, employers to not discriminate is in the financial interests of a company. I would certainly submit to avoid litigation, the time and expense of litigation can be in the financial interests of the company. If lawyers advise clients in the appropriate way to develop policies so that they can help avoid discrimination, that is going to save money in addition to being morally and ethically right and to be helpful to us as a society. So, I think that in terms of helping to develop policies for employers, for schools or for whatever, lawyers can do that, and indeed, lawyers have an obligation, I think, to do that given their position in society. Also, in terms of helping to develop laws, look how many lawyers we have in the national legislature. They have to take responsibility. Maybe that is the problem. They need to take responsibility and to start to act appropriately and to educate and provide for further education about what is risky, what is not risky, that discrimination is not accepted in this society, the things that we are saying over and over again. I think lawyers need to be saying that because people listen to them, and that will help to avoid discrimination. MR. DECKER: My recommendation around advocacy services is that I tried to imply there was more than just attorneys. The mandate for our association is to pursue legal, administrative and other appropriate remedies, and under that mandate, it allows us to do many other things than just litigation, and even though we are in co-counsel relationships with some of the national backup centers. We are, also, asking for policies to be developed in the Department of Education, Department of Mental Health, Department of Mental Retardation and use a lot of non-attorneys to educate people, and we do a great deal of technical assistance to employers, as Mr. Karp has done to educate them about what the existing law is and the damage and economic loss to them through discrimination. So, I agree that there is a need for a spectrum of advocacy services to be out there, not just legal advocacy. 48 MR. SCHATZ: Also, I think that there needs to be prevention. “We talked about that earlier: lawyers can help. Very few corporations have developed AIDS policies at this point, and one of the functions of a corporate lawyer is to help them not to have to deal with people, such as Abby or myself, and I think that is a very important role. It is a matter of preventing the problem or if they haven't prevented the problem, once they get a call from Mitchell or Abby or me, to say, "Oh, yes, they are absolutely right"--you know, to advise their clients well. Very often the attorneys that we come up against have to scurry around for a couple of months to find what I really could have told them and do tell them right away; but of course, they don't believe me because I am biased, so that I think part of the solution is having the lawyers for the "other side" be more in sync with what we are saying. MS. TAYLOR: As the only non-lawyer on the panel, I thought I could speak about the experience we have had at the Commission because early on we recognized that in some ways what is most effective is the existence of the law, the weight of the law. The majority of the people, we have 20 people working full time on AIDS discrimination at the city commission right now, and the majority of those cases, the majority of the people are not attorneys, and yet we can use the weight of the law; the model that we developed was based on what was presented to us that when so many of the situations involved life and the death situation to actually engage the legal process was simply not possible. It didn't make sense. So, from the beginning our model has been to do a real upfront problem-solving approach, immediate advocacy as Mitchell mentioned. About 90 percent of our cases are able to be resolved within 48 hours of when we get them or very quickly thereafter, using the weight of the law with the backup of attorneys, and we can get in and do education. I would say that a significant percentage of what I do is involved education, and we pull in whoever needs to be pulled in when we do education. We bring in medical professionals so that there is the way regarding transmission, but we may, also, bring in experts from another area, if we are, say, dealing with the funeral industry or dentists, whomever, but mediation settlements, problem-solving and then the joint work on education I think has been a very effective model, and what that does do which I think is very important is that it takes the burden of discrimination off the individual as much as possible which has been our approach. Right now, if we rely only on the laws, the weight of the discrimination is on this individual who has to navigate the legal system. So, if we can try to have a systemic impact whenever we do anything which is what we try to do, we are having an impact on the people who will never even make it to the doors of something like the Human Rights Commission. 49 MR. KARP: One other thing (I think Katy is being a little bit too modest). One of the advantages of having non-lawyers present is that when we are talking about such a sensitive issue as discrimination, the presence of an attorney often forces people to take a much more rigid position; by having non-attorneys, you can create a safer environment where people can talk about their fears, talk about their concerns. We are not always talking about a rational response to a situation, but it is a sincere and deeply felt response, and I have gone to situations where I have been ineffective, but then Katy goes and creates a dialogue where the issue is resolved because there is trust established, and what we are trying to do is make people feel okay about expressing their fears, their misinformation and even their prejudice so that we can move beyond that toward cooperation. MRS. GEBBIE: Thank you. CHAIRMAN WATKINS: Dr. Lee? DR. LEE: Thank you, Mr. Chairman. I have two questions. What is the civil rights law that is up now? What are the details around it, and why is it being question marked? MR. DECKER: The Civil Rights Restoration Act which was passed several weeks ago by both Houses of Congress would reverse a previous Supreme Court decision. It is the Civil Rights Restoration Act, and we believe that it just restores the original intent of those four statutes to protect all people who are involved ina facility that receives some federal funds. MR. KARP: Just to amplify that, I think it is, also, a question that some of the phone calls that are being flooded into federal officials take this issue and have turned it into an AIDS issue, and they say, "If this amendment passes, then we are going to have to let people with AIDS into all these facilities." So, I think that here is a case in point where AIDS and the fear of AIDS is being used as a wedge to veto or enforce or endorse a veto of a broad-based civil right protection. CHAIRMAN WATKINS: Let us make a point of clarification on this. MS.GAULT: A point of clarification, as someone who worked on the bill that was just passed in both Houses, the AIDS issue is not the issue that tied the bill up for 4 years. I think in fairness this negative position has been a position that the President has taken on that particular bill for many, many years. The issue that tied the legislation up for 4 years was the abortion issue which was resolved to many people's displeasure by an amendment that was adopted in the Senate and then was ratified 50 by the House, the Danforth Amendment, and this happened within the last 2 months. So, that issue has tied up the bill for about 4 years, and the AIDS issue now has.come in on top of that because of its relationship to Section 504, but the AIDS issue is not what has tied up the bill for four years. MR. KARP: Right. I didn't mean to give that impression. MR. DECKER: Nor did I, but to the extent that I think it does show that the interrelationship between the fear of AIDS as it impacts on all of its protections, I think it is an example of the impact that AIDS is having far beyond its own area. DR. LEE: Thank you. That is enlightening. The other thing is why in Tennessee has AIDS been eliminated from the handicapped statute? How has it been excluded? MS. RUBENFELD: The amendment to the discrimination law here covers all contagious diseases on its face. The language of it excludes contagious diseases from the protections of the disability discrimination law in the state, but the purpose behind doing that, and my understanding as of today that specific comments on the floor by the people pushing the bill was that the purpose is to exclude AIDS from the coverage of the law. People want to be able to discriminate based on AIDS. MR. KARP: If I may, Dr. Lee, I have a copy of the amendment here. The effective date is March 6, 1987, and it says that the term "handicap" has been amended. It says that the term "handicap" shall not include any disease or condition which is infectious or contagious or similarly transmittable to other persons. That was, I think, the only aspect of the amendment that was adopted, in other words, that this specific provision was enacted sometime in 1986-87. MR. SCHATZ: It sounds like it was in response to our line. MS. RUBENFELD: I just want to point out that there is absolutely no rational basis to have an amendment like that because disability discrimination laws already have built-in protections for people who are worried that you are going to have somebody with a contagious disease in the workplace who is going to infect other people and put them in danger. There are already limits built into the laws in terms of people being able to do the job and not being a danger to other people. So, we are not talking about forcing on someone a person who is very sick or who is unable to perform a job or who is going to in some way endanger other people, so the amendment is not necessary. What it means is that I could go to work here in Tennessee and have a 51 cold and be fired from my job. I mean that is how ludicrous I think that this amendment is. DR. LEE: I have been taken by Mr. Creedon's comment earlier. These laws have to take place. I noticed the legal people on our staff have supplied me with the Kennedy-Waxman material here, and I can see that -- are you happy with the anti-discrimination provisions in the Kennedy-Waxman legislation? MR. DECKER: As far as they go. I think it is an important first step. DR. LEE: Where do they fail? MR. DECKER: I think the fact that they eliminate insurance coverage is major thing. I think we are aware of the political realities of trying to do something on a national level about insurance discrimination. DR. LEE: After having passed the laws, how do we implement them? My guess is that Chairman Watkins here will make the title of our final report -- "AIDS, Obstacles to Progress," because he has fixed on that and rightly so. The obstacle, it seems to me, to progress here in the anti-discrimination area is fear and ignorance. Those are basic to human nature, it appears to me, and Mr. Creedon has suggested that our religious leaders help us, and I just must strongly concur with that. We hear in discussions on AIDS so often of the vengeful part of the Lord, the moralistic tone, the what you shouldn't do, what you mustn't do, what you are bad for doing, and we hear too little about the merciful part of the Lord, about accepting the least of these and loving the least of these and helping thy neighbor. This is certainly an area where tremendous advances could be made for this young boy who was here. I commend you, Mr. Creedon for bringing that point up. I have gotten to know over the last 6, 7 months the members of this Commission, and I can tell you that I think we will handle this discrimination part of our report better than we have handled the drug part of our report. I, personally, made a very strong statement about federal anti-discrimination laws back last October when this issue came up, at the time, and I don't think there is any question that the Federal Government has to lead in this regard. The civil rights legislation was actually led by religious leaders. I don't know, Beny Primm is here, but it was led by religious leaders, and I think it could well be led again 52 in this regard. I don't really have any questions because I hold your truths to be self-evident, as it were. Unless you have a comment, I will pass on to Mr. Creedon. MR. SCHATZ: May I comment on what you just said about the religious aspect? I have to be honest with you and say that I have some mixed feelings about that. I would encourage everybody to get involved in terms of fighting discrimination. There is no question about that, but when Mr. Creedon said before that people should be able to go to their ministers and get comfort, I think we have to look at the reality that a lot of the -- MR. CREEDON: I didn't say that. Dr. Primm said that they should go to their ministers. MR. SCHATZ: Okay. MR. CREEDON: I said that the pulpit is a good place to educate. MR. SCHATZ: Okay, and thanks for that correction. I think that we have to acknowledge that there is a conflict very often between some of the major religious organizations and those people who are in high-incidence groups. I think that there are a lot of us in the gay community, for example, who feel that certain elements of the religious community views us with hostility. That is an important caveat. So, therefore, it is hard for us to say, "Okay, I am going to look to this church or this synagogue or whatever as the beacon for protecting my right." I hope very much to be proven wrong, but I think that is a point that needs to be made. DR. LEE: You noticed that what I said was that I would like to hear more from the religious community about the merciful part of their role and less about the vengeful part of their role, and that is where the religious community can help. I mean if they would embrace this young boy here, who is going to stand up and cast the first stone? MS. RUBENFELD: I want to add to that that I think you are making a very valid and a very important point that in our society, in our culture, religious leaders have a pretty exalted place and they affect a lot of people in our society. They are listened to by a lot of people in our society, and the same as I think lawyers have an obligation to speak to those who will listen to them, I think religious leaders have the same obligation. To a large extent they have not been exercising that obligation, I don't think, and you are making a very good point that they need to do that, and they need to do that in an 53 appropriate, compassionate way. I don't think that there is any risk to them in doing that, and again, I want to go back to this endorsement kind of issue in terms of the groups who have been most affected by the disease thus far. Yes, as a lesbian, I feel disfavored by many of the organized religious groups in this country, but I am not asking them to endorse me or to support me or even to like me. I really don't care about that. I do think that as a religious matter, as a moral matter they need to speak out that discrimination is wrong. It is immoral. It is just not acceptable in whatever religion they are, and until they do that; that discrimination is going to continue, I think. MR. KARP: One of the things that human nature often dictates to us is that we all stand in a corner somewhat frightened to take the first step or to be in the limelight. I think that the Commission stands in a unique position because what you can do is invite everybody to hold hands with you and take a step forward, and I think that while I, too, endorse Mr. Creedon's suggestion, I think that what we are trying to do is to coordinate all forms of leadership, that religious leadership is an important component, but so, too, are physicians, dentists, community leaders in any format, and that if we all take that step together, then none of us will stand the risk of alienation or criticism because we are doing it as a community, and I think that it is important to include those religious leaders because they are a critical component. DR. LEE: You know, Dr. Everett Koop has, I think, a most marvelous statement, the one where he says, "I do not have a choice. I am the Surgeon General of all the people." And certainly religious leaders represent all of their flock, and I agree with you, Mr. Karp, that politicians should feel the same way, too. MR. CREEDON: I agree with what Ms. Rosenfeld said, and that is that religious leaders seem to talk about faith, hope and charity, and of the three, the greatest is charity. I think what we are talking about here is charity, charity both in caring for people who are sick and in not being unfair to people, not discriminating against them. I think that is a thing that the religious leaders can talk about, but that is not what I -- I have a question, but I want to think out loud for a little bit before I get to the question, if we have time, Mr. Chairman. The basic question, and it really comes up because of the hearings that we had before with respect to health care. I think in listening to days and days of testimony we realize, and I think Mr. Decker made a similar point, that many of the deficiencies in the care of people with AIDS or the AIDS virus are deficiencies in our health care system that apply in many other respects. To some extent I think we were leaning to commenting on the deficiencies, pointing them out as we are a Commission with respect to AIDS, but recognizing that these deficiencies are not 54 . 1 iz specific only for AIDS. When you talk about out-of-hospital care or hospices or need for taking care of people who don't have to be in the hospital, it is probably easier to deal with issues in that way. I think when you get to this subject, and I think your testimony is very valuable, it is one of the most difficult subjects that we are dealing with because you have a variety of influences here. First of all, you have what a major portion of the people in the United States would regard as moral issues. They would disagree with some of us as to what is right and wrong, and that is just a fact. That is a fact you have to deal with. If you want to change the laws on sodomy, you are taking on tremendous political problems. If you are going to change the laws on sodomy, should we change the laws on IV drug abuse, too? Should we legalize drugs? That is one way of getting at some of the problems. Sometimes I think it would be a good idea, but we are saying, "Well, you cannot legislate behavior." If you have sodomy laws, if people are going to practice sodomy, they are going to practice it regardless of what the law says. If you legalized drugs or if you have laws against IV drug abuse, the people are still doing it. They are abusing their bodies, using drugs. The laws are there, but they are not paying any attention. On the other hand we are saying, "But we need laws with respect to discrimination." Now, we are making a difference. We are saying that one law has impact, and this law does not, and I think the difference is probably an appropriate difference. I am not really disagreeing with it, but you know, the Civil Rights Act of 1964, which as Dr. Lee intimated was really brought about because of recognition on the part of the leaders of our country that there were wrongs out there, people like Dr. King and probably today Mr. Jackson, but the discrimination is still there. Discrimination is a part of people, and to some extent you can legislate against it, but you don't eliminate it by legislating. I agree with what you said. At least if you have a law, it gives you a basis for trying to do something. Whether you can get a law like this at the federal level, I’ think is questionable because of the issues that are involved, and so my basic question really is when Mr. Decker first started speaking, I thought that he was saying, "Look, we have had discrimination for years on mental retardation. Can you put a home ina particular community and have mentally retarded people in that community?" I lived in a community where that issue raised hell, and it was wrong, and eventually they put it in, and the home didn't cause any problem, but it just raised Cain in that community. I think the question of whether you have a specific legislation that is AIDS specific, you can do it in New York. New Yorkers, you know -- MR. KARP: New York doesn't have AIDS-specific legislation, and I am very glad that it doesn't. 55 MR. CREEDON: It has something. MR. KARP: It has none. MR. CREEDON: You might not get it through even the New York legislature. MR. KARP: We do have protection against discrimination on the basis of sexual orientation. MR. CREEDON: But getting legislation at the federal level with respect to discrimination in the areas that we are talking about, I think is extremely difficult. Now, I think you can do much of it, if it is not AIDS specific, but that is not what you are talking about. Much of what you are saying is -- MR. KARP: I would like to respond to that because I think there is a key point here. MR. CREEDON: Basically this is my question. Really should any legislation be AIDS specific or is that counter productive in terms of -- MR. KARP: In the grand scheme of things, I would tend to agree with you that when you have specific legislation, you contribute to some extent to the stigmatization. Why should this be treated differently? MR. CREEDON: And in this area that is a tremendously sensitive issue. MR. KARP: That is right, but I think that all of us on this panel would heartily endorse federal disability discrimination that protects against discrimination on the basis of disability in the areas of employment, housing and public accommodation and that it does not matter whether I have one arm, one leg, whether I have tuberculosis or HIV infection. Our only urging at this point is to ensure that in that legislation included within its provisions is some protection for those who are being discriminated against on the basis of HIV infection, because we are here to testify that that is a very real, growing and pressing problem, so that our first priority would be national broad-based anti-discrimination disability legislation, not AIDS-specific, but general disability discrimination legislation, particularly Mr. Decker who has had extensive experience in disability community issues over a long period of time. We are at a crisis point in terms of this HIV epidemic, and sometimes when you are in a crisis, you are more able to effectuate legislation on a narrow focus. 56 5 - 1 © ; . oS ‘ oc . \ MR. CREEDON: I don't think we are in the crisis point yet from a legislative standpoint myself, but it is not far away. . MR. KARP: All right, but sometimes when you are at that point of crisis, you can effectuate some legislation which you couldn't otherwise do, so that for example, I think that people in the sixties would have said that it would be good to eliminate all discrimination. I think that there was acknowledgement that people were being discriminated as much as whether they were Mexican American, for example, but we focused at that time because there was a specific history that dealt with race discrimination, and that is a unique history to this country. I think that over time we would all as reasonable moral rational people say that all discrimination should be eliminated, but we take issues as they arise. In the fifties there was a move to eliminate what they called restricted entities where Jews were not allowed. In the sixties there was a move to eliminate racial discrimination. In the seventies there was a move, the beginnings to eliminate sex discrimination, and to some extent the beginnings of disability protection. Each time there have been people who had very, very fervent moral beliefs that such legislation was unwarranted and inappropriate, but there were people who had the courage and the wherewithal to say, "I believe this," and I think the time is appropriate, given what we know about HIV epidemic that we must stand firm and say, "Yes, we would like disability discrimination across the board, but if we cannot get it, we need HIV protection right now. Too many people are dying too quickly to take any other position at this point. MR. SCHATZ: You mentioned the political difficulty of passing such a law, and I think it is important to keep in mind that -- you mentioned Martin Luther King. He is certainly a lot less controversial in retrospect than he was when he was alive. In terms of any civil rights struggle, the reason it is a struggle is because we are, in fact, controversial. I think that I would just say to the Commission that it is politically difficult, and you can make it less politically difficult. No one would accuse this Commission of being in the avant-garde of American politics. You know, you are very much in the mainstream, appointed by’ a Republican President, and if you can get up there and say, "Yes, AIDS discrimination is not only immoral; it is dangerous to the public health; that sexual orientation discrimination is not just an abstraction; it puts people in the closet, and the closet cuts people off from information, and therefore the closet is a killer." If you can take that stand, you have a lot more credibility than a lot of us. That is why we are talking to you. You know, in terms of people's perceptions, they think of people like Abby and me as 57 these very strange troublemakers and that we should just go away. CHAIRMAN WATKINS: Where were you in September of last year, Mr. Schatz, about the credibility of this Commission? What was your position at that time? MR. SCHATZ: I mean its perceived credibility. CHAIRMAN WATKINS: Go ahead, please continue? MS. RUBENFELD: There is an important distinction in the law. MR. CREEDON: And I am not saying that we shouldn't take the position; I am saying, "Is it better?" I am asking, "Is it better to take the position which supports non-specific legislation which would be worded in a way that would cover the AIDS problem than to have AIDS-specific legislation which is what you seem to be advocating in a number of areas?" MR. DECKER: I would agree with Mr. Karp that I would certainly prefer, based on our history in the disability field, that broad non-specific legislation is preferable, and we have a long way to go, I have to say regarding protection for all. MR. CREEDON: It seems to me that Mr. Schatz said something very different than that. I think he said that -- MR. DECKER: In terms of the Kennedy-Waxman proposal, I think that is an important distinction to make. As I said before, I think some major public health agenda items are not getting addressed because of the impact of discrimination. I think the theory behind the Kennedy-Waxman bill is that it is a testing-counseling bill and the federal discrimination section that is specific to HIV infection is geared to trying to ameliorate some of the problems that many people feel exist around the testing issue. So, I do think that there is a good rationale for connecting those kinds of non-discrimination, specific non-discrimination protections, if we are going to address some of these very difficult issues. But, I certainly would want to advocate for a broad national policy against discrimination, and I guess we could leave to the Congress in their wisdom how they want to best implement that. MR. CREEDON: Two very quick points, if I may, Admiral. One, with respect to Mr. Schatz' point about corporations not having AIDS policies, many of them have them, but they are not AIDS specific. They are general statements of policy which include any kind of infectious disease or disability, and I am aware of quite a few like that. With respect to Ms. Rosenfeld's comment about education, I disagree 58 with you. I think that a lot has been done to educate people about AIDS. I mean I don't read a newspaper, a magazine or turn on the television very often without hearing something about AIDS. When this Commission was appointed, the President of the United States did participate in a nationwide television broadcast where he went and kissed a child that had AIDS, and we were there. So, he has done some things. He did appoint this Commission. You know, in terms of discrimination, there is probably more discrimination out there right now against women as women than there is against people with AIDS. Now, I think it is a worse kind of discrimination that we are talking about. MR. KARP: But Mr. Creedon, let me say this. The way that we can best assess whether or not education has been effective and to the extent it has been effective is by the types of questions and comments that each of us receives or listens to when we go out and do public speaking, and I can attest to the fact that I still walk into places where people say, "Can I get AIDS from touching somebody else's food?" I still get phone calls from people who have their child told that they cannot return to school because she must take an HIV antibody test because her sole crime is that she lives ina household with her aunt, and her aunt has AIDS. MR. CREEDON: They didn't watch Metropolitan Life's National AIDS Awareness Test. It was on television. MR. DECKER: I think that is probably true. MR. CREEDON: I have been shut off. CHAIRMAN WATKINS: In the interest of facing other body fluid issues, I would like to ask that three things be submitted to me for the record, and they go this way. If you would be willing to write me a letter as follow-up, and then there may be other questions from the Commissioners in which we would like to keep that dialogue open with you all. I think it has been a very informative panel today. I would like, Mr. Karp, for you to take the situation that we heard this morning from the sister of an AIDS lad who died in New York. He was in three hospitals. The treatment that he received was one of the most discriminatory sets of treatments that I have heard of in all of our experience so far, listening to persons with AIDS. I don't know if you know those hospitals, and I really don't care. What I would like you to do is write me a letter and walk me through the scenario that you would follow in the Human Rights Commission in New York were that sister to have called you. Tell me why you couldn't solve that 59 within the laws of New York? What are the obstacles to you doing that? Is there something in the state law, city law or are we talking education and attitude and ignorance? So, I would like you to walk through the scenario. Had they called, what would have happened and under what laws would this person have received some sort of solace and help? I think it would be very valuable to me to understand why federal statute would change that, other than in the context of the broader points of view that you outlined earlier, which I understand. Mr. Decker, if you would expand on your comprehensive advocacy services concept. It caught my attention as being something that made a lot of sense. You have probably given this to us in your written testimony to a certain extent, but I would like you to take that one issue and write me a letter and recommend to me what you would do if you were put in charge of that task force, national task force to expand that advocacy effort. Let us say that Mrs. Mowery could have called you and said, "Look, I am having a real problem. A hornet's nest has been exposed down here, and I need help, and I need it now." What would that mean? What is this advocacy linkage that would be provided. So, I would like to see some kind of a conceptual structure that you have in mind and get as specific as you can. Mr. Schatz, I would like you, if you would, please, to get together with Ms. Rubenfeld and put down the specifics of your suggestions of HHS sluggishness that you both referred to in your testimony, things languishing there, how long does it take, the cases that you have submitted, and maybe Mr. Karp has a contribution to that. I think if you would take the lead, Mr. Schatz on that and Ms. Rubenfeld, I would like to know in very specific terms what are you talking about? Give us the facts. What is the time? How long has this been going on, you know, just so we can begin to follow up in Washington. We will take a look at it because we had the same thing, as you know, for years within the variety of equal opportunity groups that serve the military that I was in and others where the backlogs were extreme. When awareness was picking up, those requests for help were then coming in at a much higher rate, and we had to get ahead of that backlog. So, maybe you could give us some follow-up thoughts, and with that we will close out this particular session. It has been very helpful, and we thank you. (Thereupon, at 12:01 p.m., a recess was taken for lunch, to resume at 1 p.m., the same day.) 60 AFTERNOON SESSION CHAIRMAN WATKINS: May I ask the session to come to order now? The panel that we have coming up this afternoon first is called Legal Remedies, and for that panel we have Mr. William Hubbard, Chairperson of the Young Lawyers Division of the American Bank Association, and William T. Carlson, a member of the AIDS Coordinating Committee of the American Bar Association. We have Audrey Morton, Director of the Office for Civil Rights, Department of Health and Human Services in Washington, D. C., Ms. Nan Hunter, Staff Counsel, American Civil Liberties Union in New York, Mr. James Gladden, Mayer, Brown and Platt, Chicago, Illinois, and Bonnie Milstein, of Dolkart and Zavos in Washington, D. C. I welcome the panelists to the Commission. I would like to start then with the first statement from Mr. William Hubbard. MR. HUBBARD: Thank you, Mr. Chairman. My name is William Hubbard and I serve as Chairperson of the American Bar Association's Young Lawyers Division and I will address the ABA's policy regarding AIDS-related discrimination. My colleague to my left, Mike Carlson, will discuss the inadequacy of the existing remedies as well as the activities of the ABA Coordinating Committee on AIDS. Our nation is in the eighth year of the AIDS epidemic. In this interval, we have seen AIDS grow from a disease which it affected only a small number of people in just a few cities toa national public health crisis which knows no geographic or social boundaries. Today, the disease exists in every state, in every major metropolitan area and in many rural areas. It affects both homosexuals and heterosexuals. It affects all racial and ethnic communities. It affects people of middle age, youth, and even newborns. There may be some dispute as to the validity of various estimates regarding the extent of the spread of HIV infection, but regardless whose numbers one uses, whether the number currently infected is 600,000 or 1.5 million, this disease is a national catastrophe. Yet even now, this nation has no national policy regarding AIDS. Funds have been appropriated in increasing amounts over the years for AIDS research and educational efforts, but no coordinated national policy has been developed. It is against this background that the American Bar Association began to develop policy in this area. As lawyers, we were initially struck by the extent of discrimination which was occurring related to AIDS. But, as we looked into the matter further and talked with public health officials and medical authorities, we found that this discrimination presents far more than an ethical or moral issue. Rather, this discrimination is 61 having a serious negative impact on public health agency efforts to stop the spread of AIDS. I am aware that our testimony is supposed to address solely the issue of discrimination. The position of the ABA, however, is that discrimination cannot be dealt with as a separate issue because prohibiting discrimination is a critical and absolutely necessary component of efforts to stop the spread of AIDS. I therefore ask your indulgence as I discuss discrimination within the context of sound public health policy. In the absence of a cure or vaccine for AIDS, the ABA believes that educating the public regarding AIDS transmission and how to prevent it is the most effective means available for controlling this epidemic. Nowhere is this education ‘and counseling effort more important than for high risk individuals since it is they who have the greatest chance of having already been exposed to HIV and therefore passing it on, or of being exposed to HIV in the future. Encouraging such individuals to come in for voluntary testing and counselling is critical to controlling the spread of AIDS. The ABA further believes that without strict confidentiality and prohibitions against discrimination, a national program of voluntary testing and counseling will be less successful.as a means of control because many high risk individuals will not come forward to be tested because of their fear of discrimination. \ Despite all medical knowledge and educational efforts, many people still think that AIDS can be passed by casual contact. The result is a significant, well-documented problem of discrimination against those with AIDS or those perceived as having AIDS. People have lost their jobs and their housing, children have been denied access to schools, and parents have been denied custodial access to their children. People of all ages, races, sexes, and sexual orientations have been the subject of such discrimination. Many individuals do not want to risk such discrimination for the sake of finding out whether they test positive for HIV since the test does not indicate that someone has AIDS or will develop AIDS. Further, since there are currently no therapies available for people who do test positive but are asymptomatic, there is truly no inducement to come forward and risk being discriminated against. Confidentiality alone is not enough to assure a successful voluntary testing and counselling program because people know that confidentiality has in the past and probably will in the future be breached. In fact, we have been told by public health officials that they feel professionally and morally 62 obligated to advise clients not to be tested, even with assurances.of confidentiality, unless they are tested in an anonymous, double blind procedure. The ABA has therefore adopted a policy that supports federal legislation that promotes voluntary testing and counseling, mandates confidentiality, and prohibits AIDS-related discrimination. Specifically regarding discrimination, the ABA's policy prohibits discrimination against an “otherwise qualified" individual in employment, housing, public accommodations, or governmental services solely by reason of the fact that such an individual is, or is regarded as being, infected by HIV or having AIDS or an AIDS-related condition. By inquiring whether an individual is "otherwise qualified"--that is, whether or not there is a sound medical basis for concluding in a particular case that the risk of infection is substantial or the individual is not capable of performing his or her job-~such a law would balance the need to protect the public from being exposed to significant health and safety risks with the public health policy interest of insuring - that more high risk individuals do not fear being discriminated against, and therefore come forward for voluntary testing and counselling. The American Bar Association urges the Commission to adopt this policy as a necessary pre-condition to a successful national effort of voluntary testing and counseling and thus as a critical component of our fight to stop the spread of AIDS. Thank you. CHAIRMAN WATKINS: Thank you, Mr. Hubbard. Mr. Carlson? MR. CARLSON: Mr. Chairman, members of the Commission, I am Mike Carlson. I am a member of the American Bar Association's Coordinating Committee on AIDS and appear as a representative of that ABA Committee. I will discuss why existing remedies for AIDS-related discrimination are inadequate and discuss the function of the ABA Committee on AIDS and its plans for future activity in this area. Given the public health policy concerns addressed by Mr. Hubbard, there needs to be a clear and unequivocal message that AIDS-related discrimination is prohibited. Despite the number of instances of AIDS-related discrimination, most states have not actually had to deal with, or have dealt with very few, cases of this type of discrimination. This has generally been because the individuals are scared of public exposure or they were too weak or may die before the cases come to trial. But those states that have, however, have considered such cases to come within the protection of existing laws protecting the 63 handicapped from discrimination. A few municipalities have even drafted specific legislation in this area. The current status of the law regarding AIDS-related discrimination is thus far from clear. It could be that over the course of the next few years, the situation could change to include litigation in all jurisdictions, both state and federal, but we should not wait several more years. This matter should not be left to speculation or jurisdiction by jurisdiction litigation because, in the interim, the national program of voluntary testing and counseling will suffer and our effort to halt the spread of AIDS will be severely impacted. We are now discovering tens of thousands of HIV-infected individuals. Absent discrimination protection, we are likely to have many thousands more who are unknowningly spreading the disease because of their fear of discrimination. They, therefore, do not avail themselves of the testing and education necessary to prevent this unnecessary spread. The current trend of fear of discrimination requires that federal legislation be passed that states unequivocally that AIDS-related discrimination, as defined by Mr. Hubbard, is prohibited. Only then will high-risk individuals be sufficiently assured that they either will not be discriminated against or, if they are, that they will have protection under the law. This will encourage many more individuals to come forward for voluntary testing and counseling and will greatly improve our chances for halting the spread of AIDS. Mr. Chairman, very briefly, about the ABA Coordinating Committee. This Committee was appointed by ABA President Robert McCrate, in consultation with Mr. William Robinson, the Chair of the ABA Section on Individual Rights and Responsibilities. The Committee represents 13 different ABA entities and we have invited two minority Bar Associations to participate, the National Bar Association and the Hispanic National Bar Association. This Committee has a two-fold charge. Number one, to coordinate all ongoing ABA AIDS-related activities. These activities have taken the form primarily of education. In May of 1988, the Forum Committee on Health Law will have a national satellite conference on this subject. And at the annual meeting in August of the ABA, there will be a day-long education progran. The second charge to the Committee was to develop comprehensive policy recommendations related to AIDS. Though legal issues are going to be our primary focus, the Committee is not limited to strictly legal issues. The Committee has actually identified 14 different areas of the law that will be addressed: employment, health, education, criminal law, prisons, torts, insurance, immigration, housing, probate, domestic relations, 64 juvenile justice, judicial administration and access to legal services. The Committee is preparing an informational report on the current state of the law that will objectively analyze the law in these areas; the report will be presented in August 1988. The Committee has also begun the process of developing policy recommendations by holding a series of hearings earlier this month. The first hearing was held in Washington, D.C. on the subjects of employment, health, and education. Hearings on other legal issues will be held in a variety of geographic areas in the fall of 1988 and in very early 1989. The Committee expects to present proposed policy recommendations in our report next year which will be presented to the Association as a whole in 1989. Thank you, Mr. Chairman. CHAIRMAN WATKINS: Thank you very much, Mr. Carlson. Ms. Milstein? MS. MILSTEIN: Thank you, Mr. Chairman, members of the Commission. I appreciate the opportunity to testify this afternoon before you. I have been asked to talk about the relationship between Section 504 of the Rehabilitation Act of 1973 and the subject matter of your Commission. You have heard in other hearings that you have held and certainly in this morning's hearing about Section 504. Section 504 is one part of the Rehabilitation Act that has received more publicity than any other section of the Rehabilitation Act and that is for good reason. It marks a distinctive turn in the historic treatment of people with disabilities. It is my firm belief that the current HIV epidemic and the way people who test positive or who are perceived either to test positive or to have AIDS is simply a matter of repetition of history. Hopefully, because of the work of this Commission and the work of others who are involved with issues related to AIDS we will not have to repeat some of the worst aspects of how people with disabilities have been treated in the past. Usually when I begin this kind of discussion, the immediate response is, oh, but AIDS is different because AIDS is contagious and it is fatal if you get it. Well, as one of you said in the earlier panel, there was a President who had cancer and had to be operated on in the middle of the Potomac so that others would not catch his cancer. Lest you think that people still do not believe that cancer is contagious, Representative Biaggi introduced an amendment to Title VII, the Employment Discrimination Act, that would have singled out cancer because his constituents in New York were telling him that people with cancer or people with histories of cancer or people who were 65 simply suspected of having cancer were being denied jobs because employers still believe today that cancer is contagious. My credentials for speaking to you about disability and the history of Section 504 are as follows. When I was three-and-a-half, my younger brother was born with cerebral palsy. He is now 40, and he is one of the new generation of people with disabilities who have lived to be as old as 40 because of medical advances. Because of medical advances, however, he has had many more years of being subjected to active discrimination and because of medical advances, society has had to learn how to cope with people such as my brother. I was in the General Counsel's Office of HEW and then HHS from 1976 to 1982. My responsibility in the General Counsel's Office, as you will hear from my colleagues to the left, was to counsel the Office for Civil Rights on how to enforce the non-discrimination laws with which HHS is empowered. Those laws include Title VI and IX, the Age Discrimination Act, and Section 504. After leaving the government in 1982, I joined the Center for Law and Social Policy which is a privately funded public interest law firm where my charge was to develop civil rights and poverty law programs. I focused most intensely on discrimination against people with disabilities. One question that was raised earlier, I think by Dr. Lee, was what the Civil Rights Restoration Act was and what the objections to it were. This is of specific relevance to my charge before the Commission today because I serendipitously received a copy of documents that the Moral Majority is circulating on Capitol Hill in opposition to the Act. They have the objections to the Civil Rights Restoration Act. Two of their objections have to do with how the civil rights laws will interfere with religiously affiliated institutions. The third has to do with homosexuality and the fourth has to do with alcoholics and drug abusers, and the fifth has to do with AIDS. In their supporting legal memorandum, they have written to members of Congress as to why the Civil Rights Restoration Act goes far beyond anyone's concept of civil rights and they focus particularly on Section 504, stating that it is, of all the civil rights statutes, the one that is likely to cause the most mischief. I read in part from their supporting legal memorandum where they try to distinguish among disabilities. They focus on epilepsy saying: "Who could be against improving the lot of handicapped people? The classic case presented in the legislative history of the Rehabilitation Act is the person with epilepsy which modern medicine has been able to control, who cruelly anda unfairly suffers from people's assumptions and stereotypes 66 about ‘epileptics. Needless to say, no genuine church is going to be involved in discrimination against an epileptic, and such a church will have no concern, apart from the general objection to excess paperwork or regulation about applicability to it by the non-discrimination law that protects epileptics. This is simply because there is no moral content to having epilepsy." They then go on to say that there is, of course, moral content to having AIDS or AIDS-related complex. What is very interesting about their distinguishing epilepsy from other diseases is that one of the strongest supporters in the Congress of all of the civil rights statutes but especially of 504, is Representative Tony Coelho from California. One of the reasons that he is such a strong supporter is because Congressman Coelho did not set out to be a Congressman. He wanted to be a minister, I think in the Episcopal Church, and the Episcopal Church rejected him for their ministry because he had a history of epilepsy. So with distinctions among disabilities are simply that. There are specific 504 issues that are of interest to the Commission's work. The first is that, as has been said before, Section 504 was patterned after the civil rights statutes. That was done because those who worked with people with disabilities, knew that those who are disabled suffer the same kind of segregation and isolation as did others whom society considered deviants. Second, the Congress made it very clear when they amended 504 in 1974 that intentional discrimination was not to be the kind of discrimination that they were directing their attention to solely, but rather discrimination that was not intentional also. That is, most buildings have steps. Architects do not design buildings with stairs in order to discriminate against people who use wheel chairs. On the other . hand, if a school gets federal funds, then the only way for a student to get into the school is to climb the stairs. If that student cannot climb the stairs because she needs a wheel chair, then the school discriminates on the basis of disability and that is how the Congress understood disability discrimination. Third, as I mentioned before, it is not just the impairment or limitations of major life activities that 504 addresses, but also one's history of having such impairments or simply the perception of others as to such impairments that are the subject of the prohibition of discrimination. Finally, those who drafted the statute and those who have enforced the statute have understood the difficulties of maintaining a non-discrimination program. So the statute was specifically written as a two-step process. First, you determine 67 whether or not the person claimed to have been discriminated against on the basis of disability is, in fact, disabled, does in fact have a major life activity that is impaired or is perceived to have such an impairment, and second that person must be qualified as a handicapped person. The classic example is the person who applies for the job of bus driver. The person is blind, but clearly, that person cannot perform the required physical activities necessary to drive a bus. Section 504, as it is currently written, also includes a provision with regard to drug addicts and alcoholics. The statute was amended specifically because employers were complaining that they would not be able to exclude people who abuse drug and alcohol from their program. Therefore, the Congress specifically reiterated that yes, drug addicts and alcoholics were covered under the first step of the 504 statute but no, if they were not qualified to do the job if their drug abuse or alcohol abuse interfered with their being able to perform the essential requirements of the job, the employer would be justified in not hiring them or in firing them. I have also been asked to talk about the limitations of Section 504. I will be brief because other members of this panel will speak to the same issue. The first problem with 504 is that for the past eight years, it has simply not been enforced. In fact, the history of non-enforcement could easily go back to the enactment of 504 in 1973 when it was first enacted. HEW was expected to issue regulations. However, because they had such a difficult time trying to figure out what kinds of regulations to issue, they punted and said, well, the statute speaks for itself; we do not have to issue regulations. That left, of course, such questions as does the entire subway system in New York have to be retrofitted and do all schools have to have classes on the first floor? It took litigation to force HEW to issue regulations. Those were not issued before 1977. So it was really, from 1977 until 1980 that 504 was actively enforced. " One of the achievements of the Carter Administration was to increase the number of employees ten-fold working on civil rights issues, not simply 504 but Title 6, Title 9 and the Age Discrimination Act as well, because HEW was able to convince the Office of Management and Budget that if there were lawyers who were trained in civil rights, and the lawyers were placed in the ten regional offices, then it was more likely they would deal with the claims that came in, and that the agency could do some affirmative compliance enforcement. When the current Administration came to power, one of its first acts was to eliminate the civil rights attorneys that had so recently been added to the Department. It further decreased the staff in the Office of Civil Rights and the General Counsel's Office through attrition and it did not enforce the 68 few policies that the Carter Administration set up for the Department. There will be a new statute that will shortly be introduced by Senators Weicker and Harkin that is called the Americans with Disabilities Act of 1988. It is a statute that has been drafted by the National Council of the Handicapped. The National Council members have also been appointed by this Administration. What they have done has been to review the relationship between Section 504 rights and rights under other civil rights statutes. What they have discovered is, of course, what a lot of people with disabilities currently know, and that is unless you are in the Federal Government or unless you are a recipient of federal funds, you are not required to comply with the non-discrimination provisions of 504. While it is prohibited for private employers of more than 50 employees to discriminate on the basis of race or sex, there is no such analogous provision with regard to people with disabilities. Similarly, while it is prohibited to discriminate in public accommodations on the basis of race, there is no analogous prohibition against discrimination against people with disabilities. Finally, there is, as you have raised before, the Kennedy-Waxman bill. It is a very important piece of legislation. I strongly support it, but similarly with regard to AIDS, it would be a mistake to single out AIDS as a disability from all other disabilities. I would like to think that there will not be new diseases and new epidemics, but history has proved that to be a faulty hope, and it is only by learning from our past mistakes than by prohibiting discrimination against people with all disabilities that we can hope to address some of the problems that are facing us now. Thank you. CHAIRMAN WATKINS: Thank you, Ms. Milstein. Ms. Morton? MS. MORTON: Thank you, Mr. Chairman. I appreciate the opportunity to testify before you today. As Director of the Office for Civil Rights within the Department of Health and Human Services, I am very much aware of the scope and magnitude of the AIDS epidemic. I hope that my appearance before this Commission will provide some insight into the nature and complexity of AIDS-related complaints and discrimination allegations filed with my office. The Office for Civil Rights, and I will refer to it as OCR, since 1984, has received a total of 147 complaints of discrimination filed by persons with AIDS and/or AIDS-related conditions or by other persons on their behalf. The number of complaints filed has increased in each successive year and it is projected that this trend will continue. While the total number 69 of complaints is relatively small at this time, as the epidemic spreads, this number is most certainly going to increase. As you are aware, the primary federal legal authority available to exercise jurisdiction over complaints of discrimination by persons with AIDS or AIDS-related conditions is Section 504 of the Rehabilitation Act of 1973. However, when OCR receives a complaint of discrimination we look at the possibility that the complaint could also be resolved under one or more of our other authorities. These include Title VI of the Civil Rights Act of 1964 which prohibits discrimination on the basis of race, color and national origin. It also includes the community assurance provisions of the Public Health Service Act of 1964 which requires health care facilities assisted by the Hill-Burton Act to provide health care services to all persons residing and/or working in that service area without discrimination. The greatest percentage of complaints filed to date have alleged a violation of Section 504 with a small percentage having a Title VI or Hill-Burton violation alleged. However, it would be inappropriate to ignore these other authorities given the statistical rise in the number of minorities with AIDS and AIDS-related conditions. These other authorities may also be appropriate vehicles in addition to Section 504 to exercise jurisdiction over nursing homes which are beginning to emerge as the source of numerous complaints from persons with AIDS or AIDS-related conditions. OCR, in conjunction with other components of the Department of Health and Human Services, is working to educate and to inform health care providers of their responsibility to provide services in a non-discriminatory manner to persons with AIDS or AIDS-related conditions. We have also undertaken a number with outreach activities that are designed to inform persons of AIDS or AIDS-related conditions of their rights to file discrimination complaints with OcR. The prevention of discrimination against persons with AIDS or AIDS-related conditions can only be accomplished through extensive education programs and vigorous enforcement of the civil rights of persons whenever violations are found. Health care and social service providers must be educated on the nature and complexity of the disease, how it is transmitted as well as how it is not transmitted. How to care for and provide services for persons with the disease and most importantly, their obligation under federal law to provide these services in a non-discriminatory manner. The Federal Government must send a clear, unequivocal message that the civil rights of persons with AIDS and AIDS-related conditions in such areas as health Care, social services, employment, education and housing will be protected. The exercise of these rights must take into account the general 70 r public health concerns as are stipulated by federal and state public health officials. However, jrrational fear and ignorance of the disease must not be allowed to foster acts of discrimination against persons with AIDS or AIDS-related conditions. Mr. Chairman, I have attached, as an addendum to my statement, summary data which will provide the Commission with an overview of AIDS complaint activities conducted by the Office of Civil Rights. The addendum provides, in addition to raw data, a brief factual summary of each complaint filed with my office, the names of the complainant, recipient and any other identifying statements have been deleted. The summary will give you an excellent feel for the nature and kind of discrimination allegations that are surfacing. I would like to thank you and the members of the Commission for this opportunity to speak. I will be happy to answer any questions that you or any members might have. Accompanying me to this hearing is Mr. George Lyon, Legal Counsel for the Office for Civil Rights. He is available to respond to any legal issues that you may have. Thank you. CHAIRMAN WATKINS: Thank you, Ms. Morton. Ms. Hunter? MS. HUNTER: Thank you, Mr. Chairman. Thank you very much for the opportunity to testify today. I have the advantage of having heard my co-panelists testify and touch on many of the issues that have been set out for this panel. I have also heard the testimony of the first panel this morning. So what I would like to do in my oral testimony is summarize and emphasize a few of what legally are some of the key points on the issue of anti-discrimination, specifically on remedies. I will begin by emphasizing what my co-panelist, Mr. Hubbard of the American Bar Association, said because I think it is critically important. This panel has heard testimony and has compiled a record which I believe shows that there is a consensus on key points with regard to discrimination. There is certainly a public health consensus. As I outlined in my testimony and as Mr. Hubbard pointed out in his oral testimony, a public health consensus exists on the need for anti-discrimination laws, and on the belief that anti-discrimination laws dealing with the medically unjustified acts of exclusion and discrimination against people with AIDS and people associated with the disease of AIDS should be viewed as part of the public health effort. The American Medical Association agrees with that, the American Public Health Association agrees with that, the Centers for Disease Control agree with that, the Association for State and Territorial Health Officials agrees with that, and the National Academy of Sciences agrees with that. Joining that public health consensus is also, as we have heard, the American Bar Association and the American Civil Liberties Union. 71 The consensus includes the point that there must be effective federal law on this point, that state laws are not adequate. The consensus also includes the point that the remedies are in some ways the most crucial issue left before us because we have partial federal law coverage in the area of discrimination based on handicap. However, the remedies under that federal law as we have heard, are grossly insufficient. They extend to a minority of the workers in this country. They do not extend at all outside of the federally-financed sector to housing, to public accommodations, or to transportation. I would point out here also that there’ is a history of that congruence. That is, a congruence -between the needs that public health officials have expressed time and time and time again to have anti-discrimination policiés in place for public health reasons, and the policies of the civil rights and civil liberties groups like the ACLU, as well as the established bar groups such as the American Bar Association. In fact, in the Arline case which is mentioned a great deal in the document before the Commission, the American Civil\ Liberties Union and the American Public Health Association filed a joint brief making precisely that point, that when you focus\on the issue of impediments to people being able to continue to work or school children being able to attend school, or people to be able to continue in their housing situations, in situations in which there is no medically justified basis for discrimination, then there is an extraordinarily strong need to egally prohibit that medically unjustified discrimination. The second point is that we do have an anti-discrimination law, the Rehabilitation Act or, as it is commonly referred to, Section 504./ The issue ithat is brought up with regard to the AIDS is often the issue of does AIDS pose a risk to safety, is AIDS somehow different from the other issues that are considered under our existing federal law; I think it is important for the panel to recognize that the history of the interpretation of that law teaches us that AIDS is not unique, that indeed one can-think of many situations when the courts have had to wrestle precisely with the issue of a risk to safety of other co-workers or risk to safety of other people in the workplace environment or the program environment associated with a particular handicapping condition. One of the leading cases under Section 504 which predates AIDS is a case which was in the U.S. Court of Appeals for the Third Circuit, involving a school bus driver who was hearing impaired. The Court there had to analyze whether a school bus driver who was hearing impaired was "otherwise qualified," to use the term of the federal statute, to have that job. Obviously the issue there was a risk to safety. You are talking about school bus drivers and about whether the person 72 can hear what is going on in the bus or outside the bus and can perform that job safely. Lo With regard to the issue of AIDS, the safety question is a different question. The question is one of transmission and transmissibility. However, there is nothing unique about the framework of courts assessing safety and risk to safety in the framework of this disability discrimination law. Indeed, the reason I think that the Supreme Court was able in the Arline case (which was decided almost exactly a year ago) to interpret Section 504 so authoritatively to include communicable conditions is that the Court recognized that the law itself set up a framework for assessing risk to safety as well as other issues associated with handicaps. And the court recognized that AIDS indeed fit very comfortably into that framework. So, as the courts consider these cases under the disability law that exists, the question is whether a person is otherwise qualified for the job in question or to participate in the program in question. If, according to medical authority, not to hysteria or to community reaction, but according to medical authority, if that person is otherwise qualified, that is, if there is no significant risk of transmission, the person is entitled to relief. If medical authority were to conclude that there were a significant risk of transmission, then the person would not be entitled to relief. That framework is there: it is there in the law, it is there for other handicaps, and it is there ready to be applied to AIDS. The Supreme Court has applied it to communicable conditions. To my knowledge, all of the federal courts which have considered an AIDS-related case have assessed, based on what was really virtually unanimous medical opinion, the issue of risk and have found that again the AIDS-related issues fit very comfortably into that framework of federal law. The problem, we have heard time and time again from the panelists on this and the previous panel, is not that this framework is inadequate to deal with the issue of AIDS. The problem is the coverage of the law is so extraordinarily limited that, in the context of an epidemic that has engendered so much discrimination and so much reaction, it has left far too many people unprotected, and indeed has led to very irrational results. I suggested in my written testimony that one example of that irrationality would be a person who works in an agency that receives federal money, let us say a sheriff's office, since most law enforcement agencies receive federal funding. That person is protected by Section 504 because it is a federally financed program. If that person has AIDS, he or she cannot be fired for medically unjustified reasons. That person's sister may work in 73 a bank next door. The person's sister may have no connection to AIDS except that her brother or her sister has AIDS, but yet, if it is a state perhaps such as Tennessee as we heard this morning, or other states where there is no adequate state law, (and a bank generally is not covered by the federal programs that we are discussing), that person could be fired because of hysteria or because of medically unjustified reasons. The sister would not have any legal recourse even though the brother, say, with AIDS, appropriately would have legal recourse. We have stumbled into this situation in a way that has left employers answerable to any number of different standards. Imagine running a company that has to deal with not only the federal standard for employment discrimination in this area but who knows how many state standards if you have offices or do business in all the various states, in addition to some of the municipalities which have enacted yet other laws dealing with this issue. There is a very strong need to systematize the law for the anti-discrimination and to use the framework that exists but to extend it to all the different areas in which we have seen that discrimination happens. I do not think there can be any question about the fact that discrimination is going on. Part of what I am sure this Commission wants to focus on is what is the role of the Federal Government or what should it be in making your recommendations. Certainly one key thing is appropriate legislation that would systematize and rationalize the law of anti-discrimination and extend the law that we now have. There is a second point that I would make, which is to the federal role in enforcement. Ms. Milstein has mentioned the problems in enforcement with Department of Health and Human Services and Ms. Morton has given us a report from the perspective of the agency. I would urge this Commission to consider the problems of enforcement specifically with regard to that agency in two respects. One, to think about it as you have thought about the issues associated with some of the drug research and drug treatment, the need for an aggressive and effective response in this area, the need for their not to be acceptance of a business as usual attitude when we are in the midst of a crisis. Secondly, I would urge you to remember that agencies charged with oversight and enforcement of civil rights laws are just that. They are law enforcement agencies. To the extent that we have these laws, they must be enforced. If they are not enforced, they are worthless, and.just as we insist that our other law enforcement agencies taking aggressive measures to make sure that violators do not get away with breaking the law, we must take that same approach with regard to civil rights laws, all the more so in the midst of a crisis. 74 The last point that I want to make again draws on some points that were made in the first panel, and that is the issue of the underlying factors of discrimination here. I do not think there can be any question that the groups in our society who have borne the brunt of this epidemic have been primarily and still gay men and secondly racial minorities, black and Hispanic minorities. I also do not think there can be any question but that those groups in our society face an enormous amount of prejudice and discrimination. In addition to the civil rights reasons for eliminating that discrimination, there are also public health reasons for attacking that discrimination. This Commission is not a Commission charged with civil rights, but it is a Commission charged with investigating and making recommendations on a health crisis. And in the midst of a health crisis the Commission should take the step, which would indeed be a very courageous step in the context of the culture in which we live, to recommend to the Congress and to the nation as a whole that those forms of discrimination simply cannot remain condoned in the course of this epidemic and that to continue to do so undermines our very best efforts at preventing the spread of this disease. Thank you. CHAIRMAN WATKINS: Thank you, Ms. Hunter. Mr. Gladden? MR. GLADDEN: Thank you, Mr. Chairman, members of the Commission. My name is James Gladden. I am a partner in the law firm of Mayer, Brown and Platt in Chicago, Illinois and I have practiced law in the employment discrimination area for almost 20 years. I thank you for this opportunity to testify with respect to the legal aspects of potential discrimination in the workplace against persons with AIDS or persons who have tested positive for the HIV. These legal questions are presently being addressed by employment discrimination lawyers all over the United States. There is an established body of law prohibiting handicapped discrimination. The key legal question relating to AIDS in the workplace is whether people who are suffering from AIDS or have tested positive for HIV are entitled to the protection of the various federal, state and local laws prohibiting discrimination against handicapped individuals who are otherwise qualified to perform their jobs. The answer to this question has a major impact on five questions that face an employer who is trying to respond to the present AIDS crisis. These questions are: 1) Can an employer take adverse employment actions including refusing to hire or terminating a person because that person has AIDS; 2) Should an employer test its employees and prospective employees for HIV; 3) What right does the person with AIDS have to confidentiality of his or her condition; 4) What rights do co-workers of persons with AIDS have to be informed of the identification of those people;and 5) Can 75 workers refuse to work with a person who is suffering from AIDS or has tested positive for HIV. As you have heard today, the key legal question, the question of whether or not AIDS or having tested positive for HIV is entitled to protection under the federal, state and local laws prohibiting discrimination has been unanimously answered in all federal and state court decisions as being considered to be a handicap. With respect to that, it is important to recognize cases take a long time to get through the judicial system but not only is the case law developed in that way, but statements from all agencies which have address the question have concluded that they hope to include AIDS and HIV in the coverage of their handicapped statutes and ordinances. I think it is important to note that the only governmental agency that has come out against protection of AIDS and HIV with respect to any handicapped law, was the Department of Justice in a 1986 opinion which stated that while Section 504 of the federal Vocational Rehabilitation Act includes persons with AIDS in its definition of handicapped persons, the federal act did not prohibit discrimination against persons with AIDS on the basis of their perceived or actual contagious condition. That is an opinion which has created a lot of problems in the federal enforcement question and has also created a lot of questions in employers' minds as to the scope of the federal law. The 1987 Supreme Court decision in Arline, as has been referred to by the other panelists, conclusively indicates the Department of Justice was simply wrong and the courts which have held HIV and AIDS to be covered by the federal handicapped laws and the state agencies and state courts which included AIDS and HIV in their coverage are correct. I think it is important to focus on the fact that the courts have been very forward looking in their response to this issue. I think the language of the Supreme Court decision in the Arline case is right on all fours with the questions we are facing today, and it states, and I think it is important to quote this because it is eloquently stated, it says, "Congress acknowledged that society's accumulated myths and fears about Gisability and disease are as handicapping as are the physical limitations that flow from actual impairment. Few aspects of a handicap give rise to the same level of public fear and misapprehension as contagiousness. The fact that some persons who have contagious diseases may pose a serious health problem to others under certain circumstances does not justify excluding from coverace of the Act all persons with actual perceived contagious diseases. Such exclusion would mean that those accused of being contagious would never have the opportunity to have their condition evaluated in light of medical evidence and a determination made as to whether they are otherwise qualified 76 to perform their job. Rather, they would be vulnerable to discrimination on the basis of mythology, precisely the type of injury Congress sought to prevent." That is the Supreme Court speaking and that philosophy pervades every opinion that you will find at any level of the judicial system or agency's determinations with respect to AIDS and HIV. The Supreme Court went on to say that, "In the context of employment of a person handicapped with a contagious disease, we agree with the American Medical Association that the inquiry as to whether that person creates a risk to others of significant health and safety should be based on the nature of the risk, the duration of the risk, the severity of the risk and the probabilities that the disease will be transmitted and will cause varying degrees of harm." It goes on to say, "In making these findings courts normally should defer to the reasonable medical judgments of public health officials." That statement, both as to what the coverage should be and why and how courts should go about addressing that problem is the appropriate way to address the situation and that is the way employers are addressing the situation today. With the law being established in this way, it is important to ask the question whether there are further requirements placed on an employer with respect to the situation involving a handicapped person. While there are no specific cases involving AIDS, I think it is important to note that there is a requirement for reasonable accommodation. Now, what does that mean? It means even if a person is handicapped and cannot perform the essential requirements of the job, employment cannot be denied or terminated if reasonable accommodation can be made without undue hardship to the employer to enable the handicapped person to perform the job. The Federal Government has extensive regulations with respect to requirement of reasonable accommodation. It can include job restructuring, part time or modified work schedules, or acquisition or modification of equipment or devices. The 11th Circuit in the Arline case suggested that under the Federal Handicapped Law, the duty to accommodate may include a duty to find a handicapped person another position in the workplace if the employer is unable to accommodate the individual in his or her current position. However, a Federal District Court in Maryland held that the duty to accommodate contemplates only accommodation or modification to the employee's present job. While the full scope of this duty of reasonable accommodation is not established, the factors of cost to the employer obviously will be given consideration. Any employer dealing with persons suffering with AIDS must be aware of the duty to reasonably accommodate. 77 In short, to date, courts have established that persons with AIDS are protected by the handicapped laws and must be treated like all other persons with handicaps and that means that no adverse employment action can be taken because a person has AIDS. But I think it is important to recognize that legal remedies are not the only answer to employment discrimination. The stick cannot be the only means that is used to erase such discrimination. First of all, the legal system is always cumbersome. Secondly, the remedies are not particularly effective and this is completely true with respect to the AIDS person, in the sense that threat of back pay can be substantial when you fire a black who is age 25, or you fire the 50-year-old middle level manager who has another 15 years of working life. To the person who is suffering from AIDS, the person who has a short life expectancy, back pay is not a substantial remedy for that person nor is it a substantial threat to the employer, and that is one of the real problems with the present law with respect to the remedy. Courts throughout the United States, under Title VII and under the state laws, almost uniformly have held you cannot get a temporary injunction. If I fire somebody because they are black or I fire them because they are too old, it is very difficult to get an injunction in that situation because the court will say that back pay is the complete remedy and you have an adequate remedy involved. Therefore, no injunction. That is not a very satisfying prospect for the person with AIDS. What the AIDS victim is looking for is self respect and an identity and ability to continue his place in society, not be excluded from society. One other thing that has to be recognized also with respect to AIDS which differentiates it from other types of discrimination is you will very rarely find systemic cases, class actions. You can have policies which will discriminate against all people who are black or all people who are women. That will bring generally a- large number of people in your work force into play and create a large potential liability. With respect to the AIDS situation there are going to be more and more simply single cases, and a single case of AIDS is more expensive for that individual to bring, it takes more time for the government agency, be it state or federal, to investigate and act with respect to that situation. Because of this, I think companies are turning away from simply saying, let us comply with the law. They are going beyond that. A good example of that is the recent Allstate Forun of Public Issues where there was a private effort to educate companies throughout the United States as to the realities of 78 HIV and the appropriate response to this crisis. There was a unanimity among the people attending that meeting representing close to 250 major corporations that education is. the key to removing discrimination against HIV victims. Task forces were established by that forum which prepared model human relations policies, medical policies, corporate communications policies and legal programs to assist corporations in meeting the crisis. There has been an overwhelming response from people in asking for copies of this report to help them develop those policies. It must be recognized that education is important because until there is a consensus that discrimination on the basis of AIDS is wrong and not merely unlawful, such discrimination will not cease. It is the consensus that the conduct is wrong that has truly affected race discrimination and sex discrimination as much as the legal prohibition of such discrimination. Thank you very much. CHAIRMAN WATKINS: Thank you very much, Mr. Gladden. I will start the questioning with Dr. Conway~Welch. DR. CONWAY-WELCH: My apologies for being late. I would like to ask one question of the panel. I am struck by your statement, Mr. Gladden, the fact that one of the remedies for persons with AIDS who are discriminated against is not the issue of reinstitution of back pay. That seems so obvious and yet that is a routine remedy that is being used in other types of discrimination cases. What other kinds of mechanisms would you suggest or recommend that would be more appropriate? MR. GLADDEN: Well, I think that is the problem with the legal remedy situations. The main remedy in employment discrimination is reinstatement of back pay. In the Age Act they have a double back pay for willful violation. The question comes down to injunctive relief. There is injunctive relief against policies but in terms of an individual having a discrimination claim there is no present injunctive relief and that comes out of the fact that the established legal doctrine that if there is an adequate remedy at law you do not get an injunction, and courts have said that back pay or damages is an adequate remedy at law. You can argue that with respect to age discrimination as opposed to AIDS discrimination, that is a very harsh remedy but particularly in the AIDS discrimination area where the person, if he has full blown AIDS is looking at a fairly short life expectancy, in any major metropolitan area in the United States, you are simply not going to get that court case handled in the period of time that you are talking about. In various circuits, the statutory provisions of Title VII which state courts should handle these cases in 90 days, they do not. They just as a practical matter do not, and there is a provision that says you can send them to magistrates with the consent of the parties, the 79 parties can consent and if the lawyer does not consent, he does not want his case tried to a magistrate of the court, and even if you tried the magistrate so injunctive relief becomes the key item, and I noticed that in the Kennedy-Waxman bill, they provide injunctive relief but I think you have to recognize even injunctive relief is not a panacea, and it is a particularly difficult remedy for the person bringing the case, because you are talking about going to trial in a very short period of time and that gives a substantial benefit to the person defending the case if that person has any ability to come up with other reasons. I do not think in the gross situation an injunctive relief is going to be good because the person is going to recognize I am going to lose very quickly, but in other types of situations, that becomes a two-edged sword because an injunctive proceeding an employer can have a substantial advantage and he has all the witnesses at his control. There is no discovery, there is no deposition so the other person who is the person making the complaint is putting their case on what we would call cold but I think injunctive relief is the only potential other legal remedy that is there and even it is not a particularly attractive remedy although it is better than back pay. CHAIRMAN WATKINS: Mrs. Gebbie? Oh, excuse me. MS. MILSTEIN: If I may add just one point. This is a very good example of where aggressive federal enforcement action would be appropriate. HHS is under a requirement to complete investigations of complaints within specific time periods. When we are talking about an employer who has used federal funds, the punishment that they are facing is termination of their federal funds. If we are talking about Vanderbilt University facing the loss of its federal funds in the History Department and the other funds that it gets from the Federal Government, what often happened when HHS did enforce civil rights complaints was that there would be a settlement agreement reached so that the University would not have to lose its federal funds, and back pay would be awarded to individual and the discriminating policy of the University would be changed. CHAIRMAN WATKINS: Mrs. Gebbie? MRS. GEBBIE: I guess my first question is a general one to all of you, and it picks up on something that came up during the panel before lunch and I am not sure that all of you were here to hear that. I know some of you were, but we ended that panel with a discussion of what statutory changes might be helpful, and some discussion of whether broad statutory changes would be most helpful or even doable or whether some fairly narrow adjustments specific to HIV infection would be both doable and appropriate in the short term. I think it has been referred 80 to. in the phrase raised by several of you, but I would appreciate a little further discussion on that issue. Should we concentrate our work on pushing for and achieving remedies under the existing statutes broadly construing them to cover everything you can include under them? MS. HUNTER: Well, you cannot construe them broadly enough. I mean, there have to be legislative initiatives to extend the coverage. There is really no way around that. Then the question really becomes, as you have said, whether you go with an AIDS specific bill like the Waxman legislation or whether you go with the kind of bill that Ms. Milstein referred to that the President's Committee on the Handicapped contemplates introducing probably fairly soon, which would be an Americans with Disabilities Act. Without trying to get into the particulars of analyzing particular provisions of the Waxman bill and trying to compare it with a bill that has not even been finally drafted yet, I really believe that it become politically doable when entities like this Commission endorse that principle. So the achievement of it is not going to be significantly more or less doable in practical terms based on whether it is a AIDS-specific piece of legislation or whether it is a broader disability piece of legislation. But I think the AIDS issue is more likely to hamper the broader scope of protections for Americans who have disabilities certainly than the other way around, and so I would urge the Commission to focus on the strongest possible endorsement of the ultimate goal of both those pieces of legislation with regard to anti-discrimination laws. MRS. GEBBIE: Anybody else have a comment on that? MS. MILSTEIN: As I said before, the historical problem with disabilities has been that there have been "good" disabilities and "bad" disabilities. The designation of good and bad has changed over the years so that, for example, not that long ago people who had epilepsy were considered incarnations of the devil because of their uncontrollable seizures and other aspects of epilepsy. Now we have Moral Majority papers laughing at the people who have never considered epilepsy to have any moral content at all. Now, on the other hand, the Moral Majority says that, of course, AIDS-related diseases have clear moral content. Even with disabilities that were contagious not that many years ago like polio for example, the reactions of parents to having their children play with children who had contracted polio was very similar with what we are seeing now with regard to parents whose children are going to school with children who have tested positive. It is a mistake, I strongly believe, to distinguish among disabilities because there really is no justification for distinguishing among disabilities when what you are talking about is making rational data-based decisions about whether or not any 81 American has an opportunity to fulfill his or her potential in employment, transportation, housing and education. We must make rational distinctions and set rational priorities with regard to how we spend whatever money becomes available. fFor example, using rational, objective data, we can decide that NIH is or is not getting enough money to spend on AIDS research as opposed to Epstein-Barr research or Tay-Sachs or sickle cell research. But we cannot divide up the civil rights pie based on subjective notions of "good" and "bad" or "immoral" disabilities. MRS. GEBBIE: I think it is important to keep underscoring that once you have covered people with that disability statute, that does not take away the right of employers to critique this individual's circumstances such as whether or not the virus is transmissible in the work sites and make the decision. I just feel a need to be underscoring that for purposes of anybody who happens to be listening. My other question is directed to Ms. Morton, and deals with the whole issue of the role of the Federal Government under present statutes, aside from what other remedies we might need. The broad perception of people is that in fact that Department of Justice was wrong in its interpretation and the perception of many other people is that now that that has been said, somebody in HHS ought to just stand up and say so and aggressively go after cases. Certainly that gets talked about in the public health community a great deal. I realize this is putting you on the spot, but I think we need to hear some discussion of whether that is something we could look for in the near future, some clear affirmation of intent to apply the present statute vigorously. Please add to that a request for some discussion from you of something that I recently got in on with the regional office, the general counsel in our part of the country. That deals with this phrase, the handicapped statute applying not just to a person who actually has the handicap but is regarded as having it. Apparently some people within the HHS system are trying to, and mind you split a hair, and say yes, it is true that the cases like epilepsy, we equally apply the statute to the person who both really has epilepsy and the person who twists once so their co-workers think they have epilepsy and they are regarded as having it whether they do or not. Officials are also saying that would not be true with cases of HIV infections that the statute applied if they really had it, but if people around them just thought they had it, the statute did not apply because the disease is different. Now, we talked for two hours and the woman never could make me understand how that was logically different. Now, maybe you could either tell me that that was a mistaken attempt to split a hair or you could clarify for me how it is an accurate thing to do. 82 MS. MORTON: I certainly will attempt to do that. You have asked several questions and so I will try to respond and then I will defer to my General Counsel for additional comments. As you probably know, the Department of Health and Human Services is known as the Department of the People. The Office for Civil Rights has the responsibility to assure that all organizations receiving HHS funds provide those services in a non-discriminatory manner. As such, I accept and investigate all complaints that are received in our office. When a complaint is received in our office, we first determine whether we have jurisdiction and then we begin the process of collecting the data. In collecting the data, we might have to refer it back to the Public Health Service for medical review. Certainly, we more than likely will have to interview a number of individuals representing that facility and then in some instances we would have to refer the case to our General Counsel for legal interpretation. It is our position that we will investigate all of those complaints and make a determination based upon the data that we receive. The Department has taken the position that even though we have made some strides in learning more about AIDS, there is still much that we do not know. AIDS is a very complex medical issue. Our emphasis at this point is in the area of research to provide us with qualitative as well as quantitative data and public information. The Office for Civil Rights is heavily involved through its regional offices that give technical assistance to health care agencies, community groups, government agencies, etc. So where we might eventually find the need for some additional federal legislation, at this point we are able to investigate most complaints, as we have more experience in dealing with AIDS, then we might be able to say very emphatically that there is or there is not a need for additional legislation. MRS. GEBBIE: And you think you have advertised that intent, to pursue complaints and educate them and so on, sufficiently that anybody in the country ought to understand that you are ready to go after AIDS the same way you do discrimination against the retarded in a facility or something like that. MS. MORTON: I certainly cannot say that there has been adequate advertisement. We are doing a lot, we have every intention of doing more. In the session this morning, there was a question of the household mailer. That is a massive undertaking as you probably know. We have a target date of May 23, that this household mailer will be delivered to all the post offices throughout the country with the desire that they are actually distributed to every household within the next 30 days. 83 MRS. GEBBIE: Will that include essentially an advertisement saying if you think you have been discriminated again, check with HHS? MS. MORTON: The mailer itself is designed to give individuals the information whereby they could seek additional data, resources, etc. We do have a hot line mentioned there and they can contact that hot line and with that contact, they will be dealing with specific directions as to how they would go about making a claim. MRS. GEBBIE: I understand that to deal with information about AIDS. Will it include a clear advertisement of the availability of your resources to deal with discrimination? MS. MORTON: There is a section in the mailer that does cover discrimination. In addition to that, OCR as its final phase of revising a policy statement which we hope to be sending out to all of recipients of HHS funds as well so that there is clarity and their understanding of our expectation of compliance with the anti-discrimination provisions. MRS. GEBBIE: I know this is taking a long time, but I would appreciate your comment on the second half of my question about the issue of being regarded as having AIDS and whether your agency as a whole is trying to make some kind of a distinction between AIDS and other conditions on that basis or was I misinformed in this issue from the regional office? MS. MORTON: Right, I covered that generally. I would like to refer back specifically to George Lyon, my General Counsel. MR. LYON: The short answer to that is no. I mean, we apply the provisions of 504 to AIDS the same way that we would with any other handicapping condition so I would say the conversation that you described took place in the way you described it, there would be continuity of some kind there. It is not our position. MRS. GEBBIE: That being the case, I do think you need to find a clear way of stating that you fully believe this applies to persons regarded as having this infection the same way it would apply to someone regarded as having any other condition and get that out to all your regional offices because I do believe there is some confusion there. Thank you. CHAIRMAN WATKINS: Dr. Lee? DR. LEE: Thank you, Admiral. Our Commission here is faced with what are we going to recommend. Now, it seems to 84 me that if there is something on the books that is workable, it makes our task somewhat easier than if we are going to recommend something that is brand new. So many of you mentioned this Arline case. As I get into it, there are two contradictions. There is one major contradiction that I would like you to address. Now, Mr. Hubbard, you quote in your submitted material that HHS exempts this from 504, on page three here, exempts AIDS discrimination cases from 504 because of the contagion problem underlined even if that theory is unreasonable and without any medical foundation. Now, Ms. Milstein, going into it further, quotes the Supreme Court. The quote from the Supreme Court is that "few aspects of a handicap give rise to the same level of public fear as contagiousness and they get around that, thereby including it." Now, could you clarify for me who is right here? Does 504 take care of this if it is enforced properly? MR. HUBBARD: I will start, and maybe Mr. Carlson can follow up. The Justice Department wrote a memorandum to HHS regarding the interpretation of AIDS in reference to 504. That was pre- the Arline decision. What we are saying is that since the Arline decision, the Justice Department has not gone back and modified its statement to conform with Arline. Although, as any lawyer knows, a decision of the Supreme Court is the law of the land, it would be helpful if HHS through the Justice Department or on its own, would state clearly that 504 applies, and that cases based on fear of contagion are not excluded from the application of 504. That is where the confusion lies. DR. LEE: So, okay, what do you say? Do you agree with that, Ms. Milstein? MS. MILSTEIN: Yes, I agree with it. I would like to get to the other question that you asked, but I really think that Mr. Lyon and Ms. Morton ought to have an opportunity to tell you what HHS's position is on whether or not 504 covers AIDS. DR. LEE: Now, the crux of it is contagiousness I gather. Is that right? MS. MILSTEIN: Go ahead. MR. LYON: The Justice Department opinion tried to create a distinction between the physically disabling effects of the disease and the contagious aspects of the disease, saying that contagion in that context was not a handicapping condition. Since 504 prohibits discrimination’on the basis of handicap, if you discriminate on the basis of contagion, under that Justice Department memorandum's view, you would not be discriminating on the basis of handicap. 85 Something that follow logically from that premise and which I think rankles a great number of people is that the discrimination on the basis of contagion would not have to be medically valid, it would only have to be sincerely held. DR. LEE: Give me that one again? MR. LYON: The discrimination on the basis of contagion would just have to be sincerely held. If discrimination on the basis of contagion is not discrimination on the basis of handicap. I do not want to get too deeply into that because the fact is the Supreme Court in the Arline decision rejected that distinction. As has been pointed out, every lawyer knows the Supreme Court is the law of the land, and that is what HHS follows. MR. GLADDEN: I think one of the problems that I have raised with this, the Justice Department filed a brief with the Supreme Court, specifically addressing this issue and specifically referring to AIDS, and the Supreme Court has a footnote which says we do not address AIDS today, we are deciding Arline, which means technically speaking, the lower courts could pull AIDS out although the language as I reported it in my remarks and as is supported in the paper, there is no basis in the language to make any distinction but as a technical legal matter, the Supreme Court left the AIDS question open. DR. LEE: I do not see that it did leave it open. Where did it leave it open? MR. GLADDEN: It left it open because it says we are not addressing AIDS, contagiousness with AIDS and they were talking about somebody with both a contagious condition and had the physical effects of the disease. It is a very technical legal point but from a policy matter, it seems to me that if the Department is saying we are covering it as a contagion - we are going to treat it as covered by 504, that relieves the legal problem with the opinion as it was written. CHAIRMAN WATKINS: We do not really have the time to follow up but I can understand that the former position taken by the Justice Department with the question of HHS policy has caused confusion. It is not incumbent to rather quickly reestablish the quality and importance of the Supreme Court decision, even though the Supreme Court decision stands for the law of the land. It seems to me that there is confusion and unless the system moves very rapidly to turn around the previous policy that was announced, there will still be confusion. A lot of people do not read the Supreme Court decisions that accurately, or even really understand some of them in great depth. except what they read in the newspaper. 86 So the question, and the follow on to Dr. Lee, is has HHS now picked this up, converted their older policy to a new policy in line with Arline to include AIDS? Have you tried to sell that with Justice so you can publish it again and change your instructions and regulations that move down into the system? Being an old bureaucrat, that is the way we would have to do it in the military. MR. LYON: Well, perhaps using bureaucrat in a non-pejorative sense, it would help to explain the chain of command as it were in terms of the organization and civil rights enforcement. There has been some discussion, a lot of discussion focusing on HHS, and we think that that comes in part from public health law and it also comes from the fact that at one time HEW was the coordinating agency for the entire Federal Government in the area of Section 504. That is no longer true and it has not been true for eight years. In 1980, President Carter signed Executive Order 12250 designating the Justice Department as the coordinating agency for a number of civil rights statutes including Section 504 because each agency that distributes money has the responsibility for enforcing the non-discrimination laws with respect to the programs it gives the money to, and someone has to speak for the Federal Government as a whole to insure that there is a consistent policy. CHAIRMAN WATKINS: I understand that, but a lot of people picket. Are you picketing outside the Justice Department at this very moment to get it turned around? In other words, you are the principal user of this document. It seems to me there would be a lot of pressure brought to bear, in fact there probably already have been working somewhere in the system, some action to turn around a directive coming out of Justice to bring all the partners into line with the Arline decision very quickly since it is a very contentious issue. Are you the spearhead for this? MR. LYON: I do not think that that is not happening but the reason it is not happening is we do not share the same perception of how all of that operates. The Justice Department has a relationship with all the different federal agencies and it had this opinion, which in this particular case came out of the request from the HHS General Counsel's office it is true, but it was discussed in connection with their 12250 coordination authority and was an opinion of their Office of Legal Counsel, which compared with the opinion of the Supreme Court has relatively low standing if the two conflict. So I guess as a legal matter, it would not be necessary for HHS to get anything changed or reversed or withdrawn in order to commence following the guidance provided by the Supreme Court in Arline, and that is what it has done. 87 CHAIRMAN WATKINS: So you have promulgated new instructions that this is the decision now to go on and change things accordingly? MR. LYON: I believe everyone in the Office for Civil Rights and the General Counsel's office understands that. MRS. GEBBIE: May I just speak up on that? I think the gap is, and this is not a question, this is an observation to you, and I guess maybe the tone of my question is within this direction as well. You may all know that, and have transmitted it by mind meld or whatever you do among your people, but when there are not documents available to folks on the street to say, aha, they now understand it or aha, this is now where they are going, the previous document is all people have to look at. That is why I pushed you on advertising your availability. You may know you are available but if the people out there do not know, they are not calling you, they are calling all these other organizations. In general the world thinks that a good hunk of HHS does not really care a hoot about following up on this, and I suggest that you need to look at that in how you communicate that broadly, not just to your own narrow cut through the system but to those who might need to use you. MR. CARLSON: Mr. Chairman, if I could provide some information on this area: In hearings of the American Bar Association Committee, Mr. Cooper, the author of this particular memorandum for the Justice Department, came and testified before the ABA Committee. Our 15-member Committee were having similar problems as has been discussed here. We recommended to Mr. Cooper that some clarifying memorandum or information be promulgated through the system. Mr. Cooper's response was it was unnecessary. DR. LEE: Who is Mr. Cooper again? MR. CARLSON: Mr. Cooper, Charles Cooper, was the author of the original memorandum from the Justice Department to HHS. DR. LEE: Okay. MR. CARLSON: Mr. Cooper responded that it was unnecessary because everyone would know the Arline decision, would know that the Supreme Court was the law of the land and therefore controlled in this area and there was no need for clarification. CHAIRMAN WATKINS: Would you agree with that, Mr. Carlson? 88 MR. CARLSON: No, we do not, and that was the point — that we made quite specifically. Mr. Cooper's response to our discussion in this area was that the Justice Department would come out with a new memorandum at some later date. We discussed other areas where AIDS was a problem in setting federal policy. CHAIRMAN WATKINS: But then does their previous memorandum stand or has it been withdrawn for lack of interest? MR. CARLSON: It has not been withdrawn, Mr. Chairman. It has been, I think, quite clearly overruled by the Supreme Court. The unfortunate thing is -- CHAIRMAN WATKINS: But the government agencies that I have been connected with, invariably we have to react to the Supreme Court decisions and turn around a set of instructions and rules. We do it very rapidly for obvious reasons because you have litigation that comes to bear and if you are operating on old instructions and data that some people down the system have not gotten the word yet, you are wrong. In fact, usually you are ready for that in anticipation of possible Supreme Court decisions. This is why we are harping on this because it is not only a substantive legal issue, it seems to me, it is another perception issue of the sensitivity to the discriminatory issues that face this particular disease. We are trying to get to the bottom of it, and that is what this hearing is all about. If anybody else has anything to offer on this subject and follow up, we are going to be anxious to take a look at how this process works because it seems to me that there is a difference of opinion at this table as to what is seen at the federal level. MR. CARLSON: A very unfortunate aspect of bureaucracy, Mr. Chairman, is that not all of those who are involved in this area, who would be involved in enforcement, are necessarily attorneys and the operations people do not have access to Arline. Nor do they really have any interest unless they are informed by the Office of the General Counsel concerning the Supreme Court opinion, and I would certainly believe that there is some need for clarifying information or memorandum to these operational individuals. CHAIRMAN WATKINS: Has the American Bar Association taken a position already with the Justice Department? Do you have a formal communication linkage which is appropriate for you to address correspondence to the Attorney General or whatever to make your position better known than say at some conference as a result of a speech and an exchange of communications that way? MR. HUBBARD: We have not, in an official capacity, communicated to the Justice Department, that concern that you just articulated. 89 CHAIRMAN WATKINS: Is that inappropriate? MR. HUBBARD: I do not necessarily think that it is and it is something that is a good idea and something we -- CHAIRMAN WATKINS: I think it is a terrific idea. MR. HUBBARD: We will look into that. CHAIRMAN WATKINS: Did we have another question down there? MS. MILSTEIN: Excuse me, Mr. Chairman and Dr. Lee, I think the reason that HHS has not promulgated anything in writing and the reason the Justice Department has not withdrawn its formal opinion is because what the Supreme Court decided has, instead of being laid to rest, continued to be a hotly debated political issue and it is being debated in the context of the Civil Rights Restoration Act. It is the position of the President that one of the reasons that he is planning on vetoing the Civil Rights Restoration Act is because it does incorporate the Arline decision. According to the press, the Administration is going to propose an alternative to the Civil Rights Restoration Act that would limit the Supreme Court decision. . So this is as far as the Justice Department and the Administration is concerned, not an issue that the Supreme Court has laid to rest because the Justice Department does not like the way the Supreme Court decided this specific issue. MS. MORTON: I would like to reiterate, too, that while that particular issue has not been resolved, OCR has not been inhibited at this point from our ability to accept and investigate those complaints. It seems at this point that since HHS has submitted to the Justice Department, that this might be an area that you could be of great assistance and take a position and expressing those concerns to the Justice Department for clarity on this issue. DR. LEE: Then what we are looking at is the Executive or Legislative arm trying to overrule the Supreme Court here. MS. MILSTEIN: True. DR. LEE: They are trying to do that. It is too big for me. CHAIRMAN WATKINS: Dr. Primm? DR. PRIMM: I will pass. CHAIRMAN WATKINS: Dr. SerVaas? 90 DR. SERVAAS: Ms. Milstein, you made a comment that I did not want to go by. It was about, that cancer that was in connection with this panel. I think we all know this, that this sexually transmitting cancer causes adult leukemia and lymphoma and it is spread just exactly like AIDS and it is a lentivirus just like AIDS. Can anyone on the panel can tell me this, will those who are antibody positive for HTLV-I which is the lentivirus that causes lymphoma and leukemia now, will they’be covered in this new law or the law that we now have on the books as well as the AIDS antibody positive for people who already have AIDS and will the ones who already have the leukemic form of this particular lentivirus. My other question, being a woman in med school, I knew all about discrimination. My best friend was a lesbian in med school, and she did not have any more discrimination, there were five of us and 200 men, I think. But discrimination, I want to tell you about an experience with two of our children in public school and private school. Unbeknownst to the private school Board of Directors, we had a lesbian superintendent brought into our city, and they did not know this, but she went to Chicago with a very young staffer and had an episode, and affair, whatever. She was let go and whisked out of town, and the very same year in our public school, we had a young staffer who was having a love affair with the principal at the school. This young staffer was also terminated. Now, she was heterosexual. In this law that we are talking about discrimination, I just would be curious to know would the heterosexual girl who was having a love affair be not protected and get back pay if you went back now and dredged this up, and would the homosexual, the lesbian, would she be entitled to back pay where the other one would not? How would that be solved? MS. HUNTER: If you have a situation now in which a man and a woman had an affair and the woman was fired but the man was not, the woman would have now a cause of action, and I would think a very strong one and one that I would certainly be very pleased to take as an attorney on the grounds of sex discrimination. The reason for the proposal of the ACLU and a number of other groups dealing with the discrimination based on sexual orientation is simply that there is no protection in the law outside of the state of Wisconsin and a few municipalities for discrimination based on sexual orientation. Sexual orientation is defined as homosexuality, heterosexuality or bisexuality. So it is true that if the basis for the discrimination were sexual orientation other than homosexuality, that too would be covered under such a civil rights law, just as if the basis for discrimination under a gender-based statute is directed against a male or the basis for discrimination under other statutes are directed against groups 91 that have not traditionally been disfavored. There is still a basis for a claim of discrimination. But the reason for a law prohibiting discrimination based on sexual orientation is, very simply, the reason that underlies all of our civil rights laws, which is the principle that people are entitled to be judged in their employment and in other relevant important areas of their lives on the basis of merit and not on the basis of irrational beliefs or stereotypes or other factors that are unrelated to whether they can do the job. DR. SERVAAS: Okay. And the HTLV-I, we will very soon be testing in all the blood banks for HTLV-I which causes cancer, leukemia and lymphomas. Will that be covered in this? Will the people who are positive for that, it is sexually transmitted, it is transmitted in the blood and it is transmitted by the same methods that, and it is often found parallel with HIV. MS. HUNTER: There would be no reason to exclude it, especially under the principles of the Arline decision. Your question as you have framed it has focused on the mode by which is it transmitted. One thing that the Arline decision does make clear is that the existing federal statute does not exclude conditions because they are communicable conditions. So without knowing any more about the condition than what you have just said, then I would have to say yes, I am presuming it would be included. There is a functional definition of physical handicap in the statute and any handicap would have to be judged by the functional definition, but it could not be excluded based on the fact that it is a communicable condition. MS. MILSTEIN: Or on the way in which it is communicated. MS. HUNTER: Or on the way it which it is communicated, yes. MS. MILSTEIN: Dr. SerVaas, you also asked a question that Dr. Lee asked before that we did not answer which was if there is a law on the books that will address problems of discrimination, would it be easier for us to just support that law rather than talking about new ones? The answer to that is that Section 504 is good as far as it goes. Section 504 addresses discrimination that is committed by recipients of federal financial assistance and by the Federal Government itself. So if you operate federal programs and you are the Social Security Administration, for example, or you are the VA Hospital or you are Vanderbilt University and you get money from whatever agency of the Federal Government, 504 applies and it applies to people who are discriminated against because of their 92 disability regardless of whether it is sexually transmitted or is a cancer or is simply perceived to be disability. But what we have said before is that the law is limited because the Congress wrote it as a way of saying we will not countenance the expenditure of federal funds to support discrimination, because that is the way they crafted the legislation. The legislation does not address private enterprise that is not connected with federal monies in any way. That is why it is necessary to have laws addressing discrimination against people with disabilities that is committed by entities that are neither federally conducted nor federally assisted. CHAIRMAN WATKINS: Dr. Crenshaw? DR. CRENSHAW: Before my question, Ms. Hunter, I have been distracted by my curiosity. What was the final solution for the deaf bus drivers? M8. HUNTER: The bus driver was found to be otherwise qualified because the Court found that the accommodation of providing adequate hearing aids, reinstated so much of the driver's hearing that he or she was able to detect noise within the bus and noise on the road and so forth and was able to pass the appropriate safety test. So in that case, the Court did analyze the issue of risk to safety and found that with that reasonable accommodation the driver was otherwise qualified to have the job. DR. CRENSHAW: Thank you. Now, I understand, I think I understand, and correct me if I am wrong, that under this proposed legislation and anti-discrimination aspects under the handicapped law, that basically, no infectious diseases are excluded. They are all subject to the same test. Is that correct? Tuberculosis and the others that have been mentioned are covered in the Arline decision? MS. HUNTER: Well, any diseases are disabilities that would be subject to the same tests. DR. CRENSHAW: Yes, this is what I would really appreciate knowing because I am not knowledgeable about this. In the actual, practical process that occurs, could you take me through a hypothetical case of someone briefly, to give me an understanding that someone who, say, has tuberculosis or you name your disease, who is working, how are the mechanisms put in place? Does public health inform the workplace that there is someone with TB? Does somebody else? What happens and what is supposed to happen? How do you get from the point that someone has a contagious disease and is in a setting where they may or may not be a risk of some sort to others, to this process you were talking about to determine -- does it require a lawsuit? I 93 assume that there are many measures in between that work more systematically without someone having to go to court. MS. HUNTER: Well, of course it depends entirely on the kind of condition you are talking about. If you are talking about an infection with the HIV virus for example, you are talking about a situation in which in any kind of a normal workplace and reaction there would not be the risk of this disability so it would seem to me this scenario -- DR. CRENSHAW: That is why I raise TB because this law does incorporate all infectious diseases and I wanted to understand the full scope. MS. HUNTER: As I understand tuberculosis, and there may be physicians who can correct me on these details, but as I understand it, the tubercular infection is actively infectious or acutely infectious during a relatively short period of time, and then assuming it is diagnosed based on symptoms, it is treated and then normally a very large percentage as I understand it of persons with tuberculosis are then not actively infectious. Although there used to sanitariums and so forth in the country, that is virtually unheard of now. DR. CRENSHAW: I am probably not making myself very clear yet. I am open to anybody answering this. I am just wondering about the logistics. Is there a procedure in place where if we are going to incorporate all infectious diseases, some of which are airborne, that deals with this issue in the workplace, what is the common practice right now? MR. GLADDEN: Employers simply, if a person comes in and sayS a person has tuberculosis, the employer then makes his initial determinations of whether that person is considered contagious or not or whether he wants to keep that person employed. The employer would then take action to suspend or discharge. If the employee thinks that is wrong, the employee then either goes to the state agency which has the handicap law and claims a violation by filing a charge, or goes to the governmental agency or if it is a teacher, may in fact sue claiming she has been deprived of her job without due process of law. But there is no mechanism whereby you go to a public health agency and have the public health agency make a determination. That is a determination that is made initially by the employer, and if the employee does not like it, then the employee gets legal redress under the statutes of the federal law and the state law. DR. CRENSHAW: So the employer is not required to consult with physicians or medical authorities? MR. GLADDEN: No. 94 DR. CRENSHAW: And it is kind of haphazard on how it comes to the attention of the employer? MR. GLADDEN: Yes. In larger companies, obviously if a person is seeking to take sick leave or takes a disability leave, there is a medical department which is actively interfacing with the person making the employment decisions but the smaller company, there is not a mechanism which requires that. The employer makes his decision. If the employee does not like that decision, he seeks to challenge it, putting the burden of proof, and the employer then has to prove that he is right. CHAIRMAN WATKINS: Mrs. Gebbie, do you have a follow-up? MRS. GEBBIE: I have a clarification. I think we have some problems here mixing up the workplace setting with the public health control system of a disease like tuberculosis which is a respiratory communicated disease and therefore a major public health interest. Any diagnosis of tuberculosis involving laboratory tests, in any state in this country, is reportable to the public health agency. The public health agency is then involved with the patient's physician from the point of diagnosis and there are a number of workplace sites where the public health rules speak very clearly you will not work during the period you are contagious. Hospitals, schools are examples of those. The public health agency supervises that process, and when medication has taken effect and the person is no longer communicable, the health agency then says to the person, you may go back to work. It is at that point that this workplace thing would come in if, when the person returned to work, the employer then further says, I do not care what the health department said, I still do not want you working here and then you would start addressing it through the statutes. MR. GLADDEN: That is true. DR. CRENSHAW: That is what I was getting at so you have in place tracking systems where you deal with those like with hepatitis A. MRS. GEBBIE: For diseases that are relevant to the workplace, since there are very few legal workplaces in which HIV transmission is relevant to the workplace, legal prostitution in Nevada being the only exception I can think of, we do not enter into the system in the same way that we do with TB, hepatitis, some of the food borne conditions. DR. CRENSHAW: I understand that. 95 CHAIRMAN WATKINS: Dr. Lilly? DR. LILLY: I would like to go back to Ms. Morton for a quick question. I am still unclear. Do you accept cases involving discrimination against HIV positivity as opposed to AIDS in relation to discrimination? MS. MORTON: As I indicated, we accept all cases. Then it becomes the responsibility of -- DR. LILLY: Discrimination against people who are HIV positive but asymptomatic. MS. MORTON: That is correct, although I do not believe we have had any cases submitted to us that have been within that narrow context but our role is to develop the data and then they can make a determination based on that data. DR. LILLY: Okay. Let us see, of the 140-some cases that you have had, about 120 have had to do with hospitals and nursing homes. Given that concentration and the panelists this morning, were talking to us about being proactive, to what extent have you attempted to be proactive in that situation, in trying to recognize, publicize and take a positive position to the prevention of that kind of discrimination? MS. MORTON: We have been proactive in that area, and I have mentioned the increasing number of cases involving nursing homes. This summer, I met with representatives from the American Health Care Association which represents a number of nursing homes throughout the country. Many of our regional offices are involved with their state agencies as well as the state nursing home associations. Just last week, in fact, we had four such sessions conducted throughout the state of Indiana. So, as I indicated earlier, much has been done but we are well aware that much more needs to be done, and our responsibility has been to provide information to these agencies and to work with them and provide additional technical assistance. DR. LILLY: Of the 140-some-odd cases that you have had, how many have been settled? MS. MORTON: Of the 147, 68 have been closed. Of that number, 27 have been closed with corrective action. The comment was made earlier regarding settlement agreement. It is our desire to maintain services in the community so we will work with a recipient to effect settlement agreement to respond to the needs of the injured parties and also to effect institutional changes in their policies and procedures so that that practice does not recur. DR. LILLY: ‘What is the average age of those cases? 96 MS. MORTON: Earlier, and as l indicated, we received our first case in 1984. We did not have much experience in investigating cases related to AIDS and a considerable amount of time was taken to develop data and policies, etc. Within the last year we have instituted an expedited procedure for investigation of AIDS cases and we are averaging very close to 95 days which is our goal. That time frame will vary depending upon the complexity of the case and the various referrals that need to be made based upon the data that we receive. CHAIRMAN WATKINS: I will close out -- DR. LEE: Admiral Watkins, I was just going to ask one thing. First of all, Ms. Milstein, I want you to note that my fellow Commissioners are now calling me D.R. Lee, but what I was referring to was not 504 but 504 plus the Supreme Court decision. Was that adequate? MS. MILSTEIN: Only if there is some connection with federal funds. But the Arline decision does not change that aspect of the law. MR. GLADDEN: One clarification. Federal funds includes federal contractors so that to the extent that a company has a contract to provide services the private employer is picked up like the affirmative action programs that there has been a lot of discussion about. They are picked up just like the college or other employer receiving the grant. MS. HUNTER: If I could just add one thing, the anomaly here is that the handicapped discrimination laws are not as extensive as our other civil rights laws are. The parameters for the extension of these laws, the examples in the employment field for example, where the model can be found in Title VII which deals with race and sex and other forms of discrimination, the anomaly here is that the handicapped discrimination law does not extend in the same way to employers with at least 15 employees. That is the critical extension in the employment area, and then there are other extensions that need to be made as well. But that has not been resolved and cannot be resolved by the Supreme Court because the Supreme Court is simply interpreting this statute. It was not, for example, like a constitutional interpretation. It was simply interpreting the statute that Congress enacted, and unless Congress enacts an extension of the scope of that coverage, there is nothing that we as lawyers can do, there is no argument we can invent that will extend that coverage. That has to come out of Congress. MR. HUBBARD: If I could follow up to Dr. Lee's point as well, I would be remiss if I did not clarify the ABA's position. Our position on discrimination is part and parcel of a 97 belief that anti-discrimination provisions are essential to the public health policy of encouraging voluntary testing and counseling. That is the basis upon which we believe that anti-discrimination provisions should be greatly strengthened, as by example, the Kennedy-Waxman bill, to encourage voluntary counselling and testing. DR. SERVAAS: Could I make a statement? You know, I heard that so many times, and I do not know how much experience you had testing people, voluntary testing, but I have been in the state of Tennessee. We tested 267 people and found three people who were positive. We had gay people come up and line up and in addition to the gay people, we have had hemophiliacs and blood transfusion people at an open area where because the public health people had insisted that we have a local surgeon there, you did not have reciprocity with the state of Indiana so we had some press before we came down so that the television cameras were grinding, and I have pictures I could show you after this is over of where people lined up in spite of the television cameras, wanting and waiting to be tested free, confidentially and at no cost and completely with counsel before and after. Now, they were notified by physicians and they were counselled after they were tested, and I believe that physicians can be trusted to counsel people when they are positive. I happen to think all people should be tested who would test positive and they should be counseled by physicians. But, I do not think it is a legitimate argument and we certainly need anti-discrimination for the help of the people who are being discriminated against, but I do not think you should use the fact that we are going to keep people from coming up voluntarily because, from personal experience in many, many states in this country, I have found that people come up in Washington, D.c. On the Capitol grounds, we had a homosexual come up to our free, confidential area to be tested and we have had positive people wherever we go. These are low risk, high risk and medium risk so having had personal experience, I do not think it should go into the record that we need this in all cases for voluntary confidential testing and counsel in order to get it. Now, we need anti-discrimination but not for that reason. MR. HUBBARD: JI am sure that there are people who would not be concerned about the absence of anti-discrimination provisions, but the ABA policy recognizes that there are a number of people who may not have shown up and whom you would not know about, who did not show up because of possible discrimination. Let me make one other point, statistics from Illinois and Alabama, indicate that the number of no-shows for testing appointments went up substantially when changes in state law lowered the protections of confidentiality and thereby increased the risk of discrimination. So, we are not talking about whether or not some people will show up, we are talking about 98 those we will never know about that will not show up unless we have these confidentiality and anti-discrimination provisions. MRS. GEBBIE: May I add and underscore it, it is very dangerous for any of us to draw conclusions based on any one experience. All across the country we have found examples such as the one you cite where under almost any kind of conditions at least some people will show up to be tested. The critical issue is to evaluate internally each of those experiences and look at whether the people who most need the counselling and testing have come forward. That is where, with critical evaluation, dozens if not hundreds of people have come to the conclusion expressed by these witnesses that greater testing is tied to the discrimination provision. I just think we have to be very, very careful as a Commission as we look at all of those experiences before we draw our conclusions. DR. SERVAAS: I think that we have not begun to scratch the surface on voluntary testing, and I do not think it is fair to use discrimination as an argument that you use in order to get more people to come forward because I think that we have fully shown that there are thousands and thousands of people who would come forward if we had free and easy access to voluntary testing or counselling. DR. LILLY: I should perhaps note that Dr. SerVaas has some personal experience that indicated that some high risk people will come forward. I have a great deal of personal experience with high risk people who state that they will under .. no circumstances come forward without an incredibly high degree of guaranty for confidentiality for fear of discrimination. So there are personal experiences on the other side, Dr. SerVaas. CHAIRMAN WATKINS: Let us close out this panel. We have to move on to our final panel. Mr. Hubbard, what has the American Bar Association done to facilitate the proper professional education of lawyers nationally? What have you tried to do in the ABA much as the AMA has just done with their National Education Conference to go to health care providers. What have you done to reach out to all other aspects of society and try to offer the proper counseling advice at your levels, the legal level can also be given. MR. HUBBARD: I would defer to Mr. Carlson who is on our AIDS Coordinating Committee. CHAIRMAN WATKINS: Just a quick answer. It would be very interesting because you said it was discussed earlier in your testimony. MR. CARLSON: Yes, Mr. Chairman. On May 17th the ABA Forum Committee on Health Law. We will be sponsoring a national 99 satellite telecast on this very issue with a day-long satellite conference coast to coast with Alaska and Hawaii included. In addition, in our August meeting, there will be a day-long educational seminar for those attending the Annual Meeting. We will also be publishing a fact paper, if you will, describing in 14 different areas of the law, the current state of the law relative to AIDS. CHAIRMAN WATKINS: How about just a very simple education program somewhat non-legal for their own understanding of the disease, how it is transmitted, how it is not transmitted and all the other aspects which seem to be still in confusion across the country. I have been talking about a professional organization. It also needs to be, much as the medical and the health care providers, all of the health care providers need to be educated. We lean a great deal on our dentists or doctors or lawyers and the question is how well are they educated in the fundamentals of the AIDS issue? MR. CARLSON: Health care attorneys like myself are very familiar with this area, and to the extent that we are asked to speak, and provide that information, we do. As far as education of the general attorney population, I would suggest that the position statement and the publication we will offer to all of our attorney members in August will provide sufficient information that to the extent that an attorney is asked to speak in this area, he will have sufficient information to do so. CHAIRMAN WATKINS: Are the attorneys that deal with health care issues sufficiently defined as a subcommunity within the ABA hierarchy, where you can identify those and attempt to have some kind of a communication link with them to do this other part of the education process? MR. CARLSON: Yes, Mr. Chairman. CHAIRMAN WATKINS: Ms. Morton, we earlier had Mr. Decker who gave a quite a rundown on the concept of advocacy. That is, to facilitate the availability of advocates in behalf of the afflicted person with HIV or AIDS. Do you feel such an advocacy network is necessary to be a proper adjunct to reach out throughout the country and make it simpler for those who feel discriminated against which is practically all the persons with AIDS that have come before us and that we have talked to. We want to make it easier for them to have that access without the fear and the concern of the process that they have to go through with all the other burdens they have to carry. Would you participate in that and would you also agree that Mr. Decker's proposal had merit? MS. MORTON: Certainly AIDS is a medical problem that demands involvement of all people at all levels, community 100 groups, government agencies, etc. Last summer, I did meet with representatives of homosexual groups and other high risk groups and at that time I expressed a keen interest in working with them and sharing information in order that we might provide as much education as possible regarding our responsibilities as an enforcement agency. I have not reviewed his particular plan, and I certainly would like to do that, and would be more than willing to work with Mr. Decker. CHAIRMAN WATKINS: Good. Thank you. Ms. Hunter, maybe if you end this. Do you already have on the shelf somewhere somewhat of a presentation of all the federal, state, and local laws, statutes, regulations and the like, that may impact on the discriminatory aspects of AIDS today. That is, can you back them up on some kind of a display where you have already looked at these issues, and it may be in selected states, including the federal level, where you have discriminatory statutes or regulations but yet when you add them all up, they do not make a whole policy. MS. HUNTER: My office is actually working on a policy document that would do precisely that, and I would be more than happy to share that with the Commission when it is done. CHAIRMAN WATKINS: It just would be a baseline of reference of where we stand today. Now, in October, we have heard a very good presentation on a summary of what is going on within the states for example. We have heard the testimony today, we had a little touch on the existing laws that perhaps have elements in them. The question is, when you add it all up, do you find sufficient base on which to make change to achieve the objectives you all have recommended, or do you have to have something that is more comprehensive on top of all of that? In the existing situation, the remedy for it is so complex and the element that touches it becomes unwieldy and you have to have Some overarching simplification. Maybe under 504 exclusively or something like that. MS. HUNTER: I do not think there is any question from what any of the panelists have said, or what we are going to find in surveying these laws, that we must have a comprehensive law of nationwide scope and of scope comparable to, say, Title VII. The laws are too scattershot as they exist now to provide that kind of comprehensive remedy or, as I said, to provide a sort of rational, coherent guidance from the point of view of employers, for example. We are, my office, coincidentally, now engaged in a process of compiling and analyzing what those laws are, and as I said, I will be more than happy to share that document with the Commission. 101 CHAIRMAN WATKINS: If you could forward that to us, we could make it a part of our record. Ms. Morton, do you have anything going on like that in HHS? MS. MORTON: Each of our regional offices has established libraries whereby we do compile any legislation related to AIDS information, research, etc., and we make that available to the community at large. CHAIRMAN WATKINS: Is that in some kind of a document that you provide or report or something like that that we could have access to? MS. MORTON: It is not in one comprehensive report. It would be a series of documents that -- CHAIRMAN WATKINS: Is that unwieldy or something that we could, that you could send us, to the Commission? MS. MORTON: I certainly would send it. CHAIRMAN WATKINS: Thank you very much. We appreciate your testimony here very much. It has been very helpful to the Commission and we thank you for coming down here to Nashville to help us. Thank you very much. CHAIRMAN WATKINS: Our next panel deals with community efforts to prevent discrimination. Our panelists are Mr. David I. Schulman, Deputy City Attorney, AIDS Discrimination Unit, Los Angeles, California; Mr. Robert E. Stein, President, Environmental Mediation International, Washington, D.C.; Dr. John Grant, Caroline County Health Officer, Caroline County, Maryland; and Dr. William Gussner, Superintendent of Schools, Wilmette, Illinois. Thank you very much, panelists, for joining us today. We would like to proceed right on, Mr. Schulman, with your statement. MR. SCHULMAN: Thank you very much, Admiral Watkins. I think what I would like to do, first of all, is make a couple of overarching points. The City of Los Angeles has had an experience regarding education that should be of use to the Commission in considering education models to recommend to other communities. Because we implemented an AIDS discrimination law very early, and because the City Council in Los Angeles evidenced a strong commitment to educate all 33,000 employees, we have had an opportunity to invent, we think, a slightly better wheel than some of the earlier AIDS education programs. In particular, what 102 I would like to emphasize is the usefulness of integrating AIDS legal education with AIDS medical education. oo What we found in working with aifferent departments and in outreach to community groups is that the law, whether an antidiscrimination law in particular, confidentiality statutes or related liability issues regarding the workplace, provides a very serious and useful additional element to AIDS education (and I hope that I am sufficiently detached from the points I am making that I am not merely reflecting the sense of self-importance that lawyers sometimes, or all too often, have). But over and over again, I have discovered that people, once they learn AIDS 101, still don't know what to do in terms of behavior, what to do in practical terms, in public settings. In ordering city employees to learn both AIDS 101 and the correlative AIDS legal issues that accompany that, we found that it achieves the following: The law provides a structure of behavior for people. It helps them learn what to do once they have learned AIDS 101. We found, as well, that antidiscrimination laws are extraordinarily important for a completely reason, one which I have heard discussed earlier today, but very closely related to the point that I have just made. People are frightened and our antidiscrimination work begins with the premise that AIDS discrimination is unhealthy for everybody, not merely people who are the specific victims of AIDS discrimination. Our constitutional values, the ones in particular that have formed and filled out in the last 30 years of civil rights struggles, we feel are as important to confronting the social impact of AIDS as the developments in science have been in confronting the medical aspects. I have found, over and over again, people feeling reassured when they are reminded that antidiscrimination at its core is a process of learning how to treat people that we are frightened of like we would want to be treated ourselves. It is a very easy thing to want to treat people similarly, who are like us. In the last 20 to 30 years, the medical breakthroughs that we have are invaluable to us in dealing with the epidemiological and medical aspects of AIDS. I am absolutely convinced that the constitutional developments that have securred in the last 30 years, the fact that we now, for the first time, have a language, a rich, developed language, for talking about what do we do when we are dealing with a group we don't understand, how to behave in a way that we later on will be proud of, has been a very important, useful community education tool. Let me try to put it a different way. The most moving moment in the Bork hearings for me did not have to do with the 103 ¢ vote "yes" or "no," but the statement that the Southern Democratic Senators made in voting "no" concerning Judge Bork's nomination. They said that their constituencies were unprepared and unwilling to have the civil rights consensus which had been forged in the last 30 years reopened for reexamination. I find that extremely useful wherever I go, making reference to the consensus that we have all lived through in the forging as a way of remembering that we have a chance to respond to this epidemic as human beings differently than in times past. I try to spend a great deal of time lecturing on the taxonomy of discrimination that is in my written testimony about the intimate relationship between stigma and the fear -of social disorder, and the role of constitutional law in reminding us that we need not fear that. I think the last point I would like to make is a follow-up to that. In looking at the history of epidemics past, it is clear that the role of law usually was to stigmatize certain groups in order to bind back together the disintegrating fabric of a society that was losing members who billed all sorts of social roles. It was the function of stigma to direct a sense of "them" onto the disenfranchised group in order to create a stronger sense of "us." That same instinct I think all of us carry deep inside in a primal sort of way, a little movie that is the collective memory of epidemics past, of the breakdown in civility and the breakdown of treating each other fairly, anda dread of battles of each against all for scarce resources. .Law was used in the past to reassert authority at the expense-of particular groups, I think the language of constitutional law that we have all been discussing today, and which I hope I may have crystallized for you in my written testimony, submitted to you in writing is not merely rhetorical. It actually cuts to the core need that everybody has to feel like they are going to be decent Americans as they learn to respond to AIDS. During your question and answer, I would welcome questions in particular about the last point of my written testimony, concerning AIDS euthanasia, but I have gone over my five minutes and I am going to stop. CHAIRMAN WATKINS: Thank you, Mr. Schulman. Mr. Stein. MR. STEIN: Thank you, Mr. Chairman, Members of the Commission. It has been a very full day and the testimony that I will give right now will be shorter because of the things which have already been said by the previous panels, which have been excellent. You have my written testimony. 104 What I will try to do in the next few minutes is discuss some strategies that can practically, I think, be used to deal with AIDS-related discrimination. In the preceding testimony that I have heard, it is clear that there is much discrimination and a lot of it is illegal and a lot of it can be looked to as the results of the slow pace of providing effective and understandable education and information on the way in which the HIV virus is transmitted. Based on the research that we have done and my experience in working with AIDS-related discrimination problems, there are some steps that can be taken, but I don't think it is amiss to mention yet again that education remains our best hope. Information should be provided about methods of transmission and about prevention. It should be in a language which is understandable and should come from a person who has the confidence of those being exposed to the information. It must, in my view, be reiterative and repetitive. Those of us who have learned about the methods of transmission of the HIV virus and now, more or less, feel comfortable about what we know should be just a bit more tolerant of those who are just learning. AIDS is a frightening disease and understanding it takes time. As David Schulman has just mentioned, information must go further than describing transmission and prevention, it should include infection control -- that is one issue -- because without that, people who are in a position to be exposed will naturally be reluctant to perform the services which they should, if they consider themselves to be at risk. Lack of this kind of education has led to discrimination by health care providers and I was interested in the previous testimony to get a picture of the number of complaints that the Office of Civil Rights has heard, which relate to the provision of health care. And, education should also be about the law and the ways in which local, state and federal legislatures have already determined that we can or cannot discriminate in certain actions. 1 choose to believe that we are a law-abiding people and, although it will not eliminate all problems, knowing what the law is important and will help shape behavior. AIDS-related discrimination issues have a time factor involved, which should be mentioned, whether they are work place, housing, insurance or the desire to open up certain 105 facilities to care. Too often, the legal system has not been able to respond effectively to the needs. Plaintiffs have died before their cases have come to trial. In California, the Chadwick Case, involving wrongful discharge, was decided in the employee's favor more than two years after he died. In Maryland and in Virginia, cases were settled virtually days before the applicant's death. Thus, there is a real need to use techniques in dispute settlement approaches that are quick, that are effective and that are fair. My testimony on pages 7 and 8 describes some of those, which I think should be considered. I think we also must support institutions on the state and local level, both public and private, that are charged with dealing with discrimination and other HIV infection-related conflict issues. The institution should be in place in order to develop the confidence of communities that they are to serve in advance of their being needed. Only then can they really be effective. City and state human rights commissions and, in the case of Los Angeles, the City Attorney's office, have started in this direction and need to be encouraged in those communities in which they do not yet exist. Private arbitration and mediation institutions should also be funded and supported. The foregoing is about individual discrimination but there also has been group discrimination. For example, in the underwriting of health insurance, according to a recent report by the Office of Technology Assessment of the U.S. Congress, a significant percent of companies use sexual orientation as the basis for underwriting individual insurance, although the National Association of Insurance Commissioners has issued guidelines opposing this practice. There are legitimate grounds for denying an individual insurance based on risk classification; however, this must be based on actual risk. Therefore, I propose in my full testimony the development of a facility to research and resolve claims of underwriting discrimination and possibly also claims involving claims payments, as well. The facility should be funded in part by the insurance industry with the support and participation from the other affected groups and should be able to reach conclusions, which, although not binding, will carry great weight. And there is a good deal of analogy of this in other institutions, which have done the same kind of work in the product liability area. The final and yet extremely important area in which group discrimination has resulted is the problem of the location and use of facilities to care for people with HIV-related 106 illnesses. These out-of-hospital facilities are needed to render appropriate care. They often are not available. Without them, the cost of care will be higher than it need be. It is another example of the not-in-my-backyard syndrome, the NIMBY problem, which has, as Mr. Creedon said this morning, existed for hazardous waste facilities, halfway houses or independent living for the handicapped. People may be afraid to have AIDS patients in their communities or discrimination may be more generally directed against the groups who may be inhabiting those facilities, gays or drug users. Advocacy groups in cities complain that there is discrimination but that the communities and the providers involved are also partially to blame. What can and should be done? First and foremost, recognize that a problem does exist. Second, strategically plan how to deal with it; anticipate it and try to develop ways to listen to community concerns. Give it time. Know the legal rights that are involved. Mobilize the leaders who can support you, whether they are political leaders or religious leaders, and they can play a critical role in communities. Meet with the community. Try to hear their concerns. In one school situation that I was involved in, there was a complaint about the spigots on drinking water fountains. Changing that might not have been necessary from a public health standpoint, but in that community they decided to put in hook fountains with drinking water cups. This showed that the community was being listened to and it did have a significant effect in that community. If you think it can help, bring in an expert because those individuals are not stakeholders in the individual conflict within a community and can be helpful in working with all parties to resolve the problen. Delays caused by community opposition can't be afforded. Keeping people in hospitals when they can be effectively treated elsewhere is expensive and it is wrong. This, I believe, is one of the most important problems to face, as the number of cases of HIV-related illnesses, far more than the cpC-defined number of cases of AIDS, continues its inexorable rise. We have waited long enough and should recognize that if we do not plan strategically and effectively, we will lose the opportunity to effectively and compassionately care for people in need. It is my belief that the recommendations of this Commission in this area can be even more instrumental in moving our society towards dealing effectively with the 107 implications of the HIV epidemic than it will be in finding a cure for the disease itself. Thank you. CHAIRMAN WATKINS: Thank you, Mr. Stein. Dr. Grant. DR. GRANT: Admiral Watkins and Members of the Commission, thank you for inviting me here. I would like to share a short story with a happy ending so far and give you some ideas of how we might maintain that happiness. Last fall, in September, a little 5 1/2 year old guy named Daniel Smith hopped off the bus and went to Denton Elementary School. Denton is the county seat of a small Eastern Shore county in Maryland. Nothing happened; there were no picket lines; there were no demonstrators. He was met by his teacher. The day went on pretty normally. The sheriff and I and the superintendent of the schools sat by our phones waiting all day. Nothing happened. So, we concluded that something went right and we have been trying to figure out what went right ever since. I think I can break it down into four key items. There was good planning. There was good community preparation. There was a lot of courage here and there was a lot of compassion. 5 The planning phase really began a couple of years before that. This is a pretty dull story. We did what we were supposed to do. The health officers of Maryland met for a couple of days in a motel. We saturated ourselves with the facts of the epidemic and we laid out what we thought would be our job in the years to come. We saw four phases of our work, none of which need ever end. The first was public education, and still the most important. The next was testing and counseling. We have been doing that for a couple of years now. The third was case management. We are just starting to get into that as the cases begin to multiply and, yes, we have them in a small Eastern Shore county of 25,000 people. Then, finally and hopefully, there will be an immunization phase and we will go intc one of our other traditional roles. I would like to point out that these are ancient public health methodologies. They were developed probably in the 19th Century. There is nothing new here but the disease. 108 We left the conference, went back to our communities and this is a key part, Maryland's counties each have a health officer who are public health physicians for the most part. We know our communities and we have a dual state/county role, which I think is extremely important. Denton is a community where the people work hard, love God and hate the government, as one of my friend's said. We knew how to deal with them. There is nothing to do in Denton after 5:00 of 6 o'clock, so people go to meetings and we attended those meetings. We talked to other agencies. As this gentleman said, we did our AIDS 101 course. We talked to service clubs, schools, churches. We touched base with every group that we knew that met anywhere. The people were very interested in AIDS, vitally interested, but I did detect kind of a denial, that nothing will ever happen here and I remember saying to my staff that the next thing that has to happen is some dramatic incident that we can pounce up on and put our educational program into a new gear and, of course, that was not long in coming. This is the part where, I think, courage begins to come in. Daniel's mother, Mirian Smith, is a very courageous woman. God knows what went on in her mind when she found her son with a mild hemophilia condition was infected with AIDS virus. I think she hovered between fight and flight and you scientists know what that is. And she came down on the side of fight. She was not going to back down. This is what I define as courage; being scared to death but doing what you have to do anyhow. And she never looked back. The first thing she started with was her day care center. She told the day care operator that her son was infected. Well, predictably, without preparation, without education, the panic set in. It was a small neighborhood type of panic. Her kids were ejected from the day care center. We contacted people in the community. We got them together for a meeting. We expected 12 people and about 30 came. And just to make a long story short, I believe we were there from about 7 o'clock until midnight, talking about AIDS. People are incredibly interested in AIDS. They are angry and fearful, at first; they become interested and then we saw a very fascinating thing. We saw that interest change to compassion and we thought the key ingredients was our willingness to answer all their questions, all night. And I believe they might have gone on all night. 109 Anyway, the meeting that started with fear and anger wound up with people hugging Mrs. Smith. And we said this is very important. We have to use this as our blueprint. Mrs. Smith took on the schools next. She announced that her child was going to school. There was a little early panic in the school system, but they had not been idle either. About a year before this, they developed a very far-reaching policy for handling children and staff people with AIDS infection and very simply it was that we would have a committee formed. I would be the chairman. I forgot that that was in the original policy. The committee would be made up of health people, school people, the victim and his or her parents, and the victim's source of medical care. We put that into effect. We had our meeting. It was remarkable. We put all the facts concerning Daniel on the table and discussed them fully and the consensus was unanimous that the child would be able to go to school. Without going into the details of how you determine that, he met the Academy of Pediatrics criteria for entering the school. I passed that along to the superintendent and he accepted the recommendation. Then we began to feel some panic in the community and especially in the board of education. The superintendent decided to have a good, old-fashioned PTA meeting and the subtitle of this story is "The World's Greatest PTA Meeting." We had that. Everybody knew a little bit about Daniel. They knew that he was coming to school. This, again, was another marathon meeting and we decided to start earlier. We started about 6:30 and still wound up at midnight. About 500 people attended this PTA meeting. I don't think that has ever happened before in the history of PTA meetings. Again, we structured the meeting very carefully. First of all, we had a dissertation by the school principal. I gave my "modified AIDS 101 for a mass audience with hysteria." And then we answered the questions with a panel. I was on the panel, of course. There was a family doctor, whose child was in the school and there were three nurses, whose children were in the school. So, we had a pretty good professional representation there. Again, the same thing happened. There was a small group of angry and agitated people. They said what they had to say and then there were more positive things and then, again, this time, no! to my astonishment, people wound up making 110 1 speeches of why this child should.go to school. So, that is essentially what happened. ; . What to conclude: We know that planning works. We have always known that. We know that education works so far. We have to press that issue. The best weapon, I believe, is sitting down and talking to people and listening to then, answering their questions. As has been said many times, they are scared to death. They want to know and as they learn, they begin to handle this in a very constructive manner. Mrs. Smith and her son Daniel, I think, have taught us how to use courage and now we must have acceptance and, again, compassion and we will get through this thing. That is all I have to say. CHAIRMAN WATKINS: Thank you, Dr. Grant. Dr. Gussner. DR. GUSSNER: Yes. I guess after your long day of testimony, you are finally going to hear another rather concrete practical experience from my testimony. I guess I will have to confess, though, as a public administrator, I was one of those public school officials who probably went by the meetings that were discussing AIDS because I assumed that it would be a long time before our own agency would have to deal with it. The only guidelines that we had established prior to our dealing with the case I am about to describe were the Centers for Disease Control guidelines, which we had very quietly as a district and a board agreed to follow about a year preceding our case. Very quickly, in January of 1987, a very courageous family, again, in our district had arranged a meeting with the principal of the school and the classroom teacher and informed the principal and the classroom teacher that the child in that teacher's classroom attending our school at that time, indeed, had been diagnosed and confirmed as having HIV or AIDS. We immediately set in motion the very long and detailed system of educating our staff and our community, most of which has been provided as background material to the testimony that I have given you. And I might point out that within two weeks of us being notified we, as a community, board of education, administrative group, the family and our staff had decided that we would go completely public, would be completely open and candid and we would take on the responsibility of not only educating our staff but of educating the entire community. I am here to tell you that 14 months later the child is still in our schools. Confidentiality has been maintained. 111 No one knows the name of the child or the family. We had a meeting at the beginning of this school year in which we invited all new parents to our community and@ all new staff because they had not yet been informed and had not yet had a chance to interact with our consultants, who had advised the system what to do. We sent out over 250 additional packets to the new people to our community and asked them to come to the meeting on September 8th and we would update them on our case and why we were handling it the way we did. We only had one couple show up at that meeting, who happened to be parents of a kindergarten child. He happened to be a reporter for Newsweek magazine. I think he simply wanted to interview our panel. A I offer that as evidence only from the standpoint that we feel we as a community and as a school district have. dealt with this in a very positive way. We now have some evidence that the way we have dealt with it has been tried in other communities throughout the country and in every single instance has been successful, whether it is a high socioeconomic or a low socioeconomic community. / If you don't mind, I am going to point out a few highlights from my testimony and then I jwill close. First let me point out two observations after 14 months in dealing with our practical case. I have learned the! difference between instruction and education. As an educator, I guess I should have known that before but I didn't. I was aware there was a teachable moment. There is a time when we really are prepared to learn what is presented to us, but more, often we can take in information and don't use it. | I give you as a concrete example what I heard from a doctor recently. We all know why we should drive 55 miles an hour on the interstate highways. We have all heard the rationale. We have all heard the laws. We all understand the law, but when you are out in the middle of North Dakota or Montana on Interstate 94, driving your own car at 55 miles an hour, what we have learned instructionally sometimes is not applied educationally. The second point I want to make on this issue is that I discovered that I could probably send out 3,000 packets to all the parents in my community at any time and be absolutely guaranteed that they would not be read, no matter what they contained. I was once told by a PR specialist that if I perfumed them and put them in a pink envelope and hand wrote the name of the parents on it, I might increase the probability that they would be read. I can guarantee you the packet we sent out the day that we announced that we were going to keep a child with AIDS in our school system, we were going to maintain the 112 confidentiality and we were going to allow the child to continue; that we did mail out 3,000 packets which were educational | materials and which every single item was read. Not only was it read, but we had follow-up meetings for the next two weeks where people came in to ask questions of our medical consultants, our legal consultants, our board of education and our administrators as to why we had made the decision that we had made. So, there is a point about how, during a teachable moment, and when a community or a system is ready to understand the full implications of what is going on within the community, a lot can be done. I ama little frustrated at times that we don't always have that teachable moment until we have some kind of a crisis or an urgency for doing something. Let me point out very quickly some of the things which I believe are the responsibility of public school systems to do. I do believe the school system should identify a basis for guiding the decision-making process when the case arises. As I pointed out, we used the Centers for Disease Control. I think it is imperative now that public agencies do debate in policy format what they are going to do and have a very carefully designed approach. Once notified that an employee or a student has such a disease, the top priority must be to maintain the confidentiality of that family or that child at all costs. Next, I think legal and medical consultants should be involved immediately with any public agency that needs to deal with the problem. It is better if you can use experts from your own community because of their credibility but if they are not confident in their credibility, then you should immediately tie them to consultants, who can serve as resources, who are experts in the field. You should identify within your institution those that have a need to know. This child was attending school everyday. We have some concerns as defined by the Centers for Disease Control. People with immediate and direct contact needed to know the name of the child and the family. They had to be brought into our confidence. They had to be trained on how to deal with that. We needed to involve our consultants, the entire administrative team, our board and particularly the family and the individual in assisting us with our communication strategies. They were very helpful in making sure that what we presented to the community was factual and to the point. A monitoring team needed to be formed within the public agency. This case continues. We meet on a monthly 113 basis. We must review the medical, legal, litigation, legislation because any of that or all of it could affect our decision and cause us to change. Each case needs to be dealt with separately, whether it is an employee or student, based on the facts of the individual case. Researched litigation and legislation, which I am sure you have already heard, is changing so rapidly and each individual case is so unique that there is no one set of guidelines that is going to cover all cases. I have already pointed out we should establish a board policy. Our communication should be carefully managed, open and straightforward. All personnel and all people in contact within the community need to be educated but they also need to have as an outlet a place they can go to express their concerns and their anxieties and may, indeed, need therapy or consultation, if necessary. I think a public agency such as ours does need to prepare to educate the entire community; including parents, public officials, clergy, pediatricians, students, media representatives, everybody, about what we are doing. Finally, we needed to develop our own materials about the disease. What we have found is that most of the materials that had been developed were not age appropriate. They did not answer the question of primary age youngsters or intermediate age youngsters. They did not particularly want to know how the disease was transmitted. They wanted to know were they in danger and if they were in danger, how could they avoid the danger. Finally, I think it is important that a school system protect all students and employees, especially the victim, who is susceptible to all diseases and make certain that other parents or employees in the future facing a similar problem can have the confidence in public officials to ask for their support. Let me close by saying that I don't believe we need restrictive legislation at either the federal or state level. What we need is the financial support and the expertise to educate our communities and our personnel so that they react to a victim with a human immunodeficiency virus in the same manner as any other person with a terminal disease, handicap, learning problem, motivational problem, exceptional talent or the other qualities which makes each of us unique as individuals. Our educational systems in the United States were designed over the decades to deal with the uniqueness of individuals. Help us to provide or by providing the financial 114 backing, the support for medical research and the educational training required so that as a public school system, we can assimilate another group of individuals with a unique problen. Thank you. CHAIRMAN WATKINS: Thank you Dr. Gussner. We will start the questioning today with Mr. DeVos. MR. DevOS: Pass. CHAIRMAN WATKINS: Dr. Conway-Welch. DR. CONWAY-WELCH: Dr. Grant, you mentioned four items, public education, testing and counseling, case management and immunization. Could you expand on case management concept as you apply it in your area? DR. GRANT: . We are just beginning to do that now as the cases begin to pile up. We have 14 in the county. This is a methodology we have used successfully in teenage pregnancy. We have used it in home health. We have used it in several other areas. What we are going to do in the region now of about four or five counties, we are going to have a public health nurse, who is skilled in AIDS management and she will have this group of people as her case load. She will guide them through the maize of the care system. We, of course, will expand on that as the cases grow. This has been used, I believe, in San Francisco very effectively also. As things go on, we need to develop a network of care that will probably be heavily weighted in home health and hospice, that type of thing. So, the case manager will be the person to make sure people get what they need when they need it. DR. CONWAY-WELCH: Am I correct in interpreting as perhaps a more sophisticated interpretation of the role that a public health nurse has traditionally carried out. DR. GRANT: I guess they have always done that. It has just been called case management recently. We have done it very successfully in retardation, where people are not aware of the different pieces of the care pie that have to be found and worked through. I don't see it as a very unusual method. DR. CONWAY“WELCH: Thank you. CHAIRMAN WATKINS: Mrs. Gebbie. 115 MRS. GEBBIE: As I listened to all of your presentations, it occurs to me that there are thousands of communities across the country, who have yet to experience their first major school-based case, but who really do have time to listen to everything the four of you have said, to write practically a textbook case of community involvement and set about doing it really, really right. Perhaps we can be a platform for causing that to happen, but we also have, unfortunately, many communities that got into this epidemic without the benefit of the reflection you have been able to do, without the cases you have been able to offer. These towns already have people angry, already have people hurt, already have people dug in on positions that aren't consistent with the things we have heard today. I would find it very helpful if any or all of you would comment on how we should best be helpful to those places that have gotten off to a bad start, have gotten locked in and need to be helped getting back out of that and off to a better start. MR. SCHULMAN: I have listed -- towards the beginning of my written testimony -- a taxonomy of AIDS discrimination which apparently medical care givers have found very useful. In dialogue with the New York and San Francisco antidiscrimination units, I came up with this taxonomy because we really were the first three government employees who were asked, full-time, to look at issues of fear rather than issues of care or issues of research or issues of case management. When I speak to community groups, I try to help them remember how profound each are: sexuality, issues of stigma, issues of helplessness, issues of mental illness -- I would like to comment on that in particular in a moment -- and issues regarding death. I want to only speak for a moment or two about the last one because, I come to this field from two very different perspectives; one as a criminal prosecutor of six years standing; secondly, as a medical ethicist of ten years. My interest in medical ethics began when an elderly relative committed suicide because she didn't want to go into a hospital to die. Three of us knew the night she was going to do it. The moral turmoil that created for me, as a law student at the time, led me to begin to study the ways which our culture has particularly difficult problems with death. The digging-in-of- the-heels that you are talking about almost invariably stems from a kind of human terror about the unknown that we cannot merely finesse with managerial techniques. One of the amazing early experiences I had was going to gay community groups with the feeling that I needed to listen to their concerns and learn. I was soon being asked to speak and 116 felt like I had no right to talk to those communities about death and about hospice. Finally, I did and had gay men coming up to me afterwards with tears in their eyes saying, "We have been living with AIDS and dealing with AIDS for three and four years and no one has ever come to us and talked about why death is a particularly problematic issue for us today, that most Americans are going to die very slowly, that death in modern society occurs elsewhere, in specialized institutions, removed from daily experience and that that removal creates an even more powerful sense of death as the terrifying unknown. That hunger for knowledge in a community that I thought would have been light years ahead of the rest of us is one example of the ways in which when, we have a polarized situation, to achieve the kind of mediation that Mr. Stein describe so well, we have to be willing to take on the extraordinarily primal issues involved with AIDS. We must address issues of sexuality and the function of stigma and the ways that we cope with fear. We must look at the consequences of living in a culture that is frightened of helplessness, that has always had a strong strain of rugged individualism which, today, may have taken a narcissistic turn, making it particularly hard to deal with AIDS, graphic reminders that each of us are going to be helpless and need others. I will comment about mental illness at a later point this afternoon because it is an issue I would like to bring to the Commission's attention but I would like to give the other panelists a chance to respond. MR. STEIN: As I mentioned earlier, I had worked in a situation in Pennsylvania, which had both elements involved. It was a situation in which a student had been admitted to school in the spring. It was then found out that he was HIV positive and there was a good deal of concern. He was removed from school. And, during the course of the summer -- the Secretary of Education asked two outside experts to assist. I was sent in to the community with Jon Chace from the Justice Department's Community Relations Service, which has a good deal of experience in working with similar problems. What he has done is developed a document called Advice to School Superintendents, Planning for the Admission of AIDS Students and Potentially Adverse Community Reaction, which I will xerox and send to the Commission. It has two sections: one, what to do ahead of time and, second, what to do if you are faced with a situation and you haven't planned ahead of time. 117 One approach which is very useful, in addition to going through your regular policies and maintaining communication with the parents, is seeking advice and counsel from others, who have already gone through it. Talk to Dr. Grant; Talk to Dr. Gussner. Call them on the phone and I am sure that others who are going through the same kind of problem that you are going through right now can be very helpful. They can be supportive and also will have credibility because they have gone through it themselves. I think with the kinds of information that are available it is possible if you haven't planned ahead of time, to try to work with the situation where you may or may not know the identity of an HIV-positive student. Dr. Grant said that the name of the student was known and Dr. Gussner said in that case it wasn't. There will be situations of both kinds. It is harder when you do know who the student is because that does create the opportunity for groups who are concerned about that individual to -- even though the child may be in school, to react negatively to that kid after he or she is in school. Where you do not know the names of the student, there are ways to deal with it, includes maintaining confidentiality or anticipating what the next steps are going to be. The set of guidelines mentioned above does that. If I can add one additional problem, which we really haven't faced yet but I am sure we are going to. Most of the HIV-positive kids in school that I know about are kids who, either through transfusion or because they are hemophiliacs, have contracted the virus that way. There haven't been that IMany situations of students in high school who may be sexually active or who may be drug users. I have heard all too often the statement that let's be compassionate about the kid, who is a hemophiliac because he is "an innocent victim." If that kid is an innocent victim, does that mean that you treat others differently. I would hate to see the idea spread about that the reason that these two communities did as well as they did is that the student was an innocent victim of contracting the HIV virus. I would hope that some of the same planning rules can also be thought about ahead of time so that when there is a high school student who is HIV-positive that person will be treated as compassionately and his family will be treated as compassionately as was the situation in both Denton and Wilmette. DR. GRANT: This sounds kind of corny -- that in places where this has not gone well, there may not be a health officer, there may not be a local health department. Some states don't have those. If there are, there may not be a lot 118 of communication between the superintendent of schools and the health officer. I think that is key. : I would recommend something that goes back, I guess, 30 years, that they form a school health council and start talking about school issues. Most counties in Maryland have those. We meet once a month. We talk about all kinds of things because a lot of our work comes together in some form or another. I think that is where you start and I think good support of that local health department and their ability to educate the public is another way to help. DR. GUSSNER: Let me just make several points. First of all, the point that was made a few minutes ago by Mr. Stein. We had our problem and we discovered it in one day and within 24 hours we were able to make the connections, both on the East Coast, West Coast, locally, other school districts that had dealt with the problem and could be of assistance to us. And to be candid, they were of tremendous assistance to us and they were completely open and willing to do so. So, if nothing else came out of this, if models could be set up, which would, in effect, give public agencies -- I don't mean just school systems -- a way of anticipating and planning for the problem in advance and to use the experience of others, that has been successfully completed, it would be very, very helpful. Secondly, I think it is -- CHAIRMAN WATKINS: Excuse me, Dr. Gussner, what is the follow-up on that? What do you have in mind specifically there. Is there a possible set of entities, linkages that you might lean on, that perhaps are already close to providing such a network, where that information could be published for national use? What are the right agencies to handle that at this point, to keep it at your level without getting it bogged down in bureaucracy. DR. GUSSNER: Clearly, the professional organizations that exist for every public agency. I think they could be used. very specifically; as you mentioned earlier, the bar associations and the medical associations. We also have the American Association of School Administrators. You have the National Principals Association. You have the Association of School Boards. In other words, there are professional associations for people who are directly on the line that are already dealing with some of these issues at their national, state and local conferences and are using models that have been done elsewhere as models that should be exemplified. 119 CHAIRMAN WATKINS: The reason I bring this up is because we have also been dealing with AIDS in the work place and there you have similar role models in the nation. We have already seen some incredible work done by business and industry that is progressive and forward thinking. I think we have some on our own Commission here who have done that kind of work and the networking needs to be part, it seems to me, of our educational programs we have been talking about. This is far beyond that which deals with with a school environment alone, but rather with all of the entities that will have to operate within that environment. I was just wondering if you have any ideas, maybe you and Dr. Grant could get together and tell us how we can recommend that networking to take place. DR. GUSSNER: There is one other suggestion I will simply point out to you because I have been part of two experiences based on the medical consultants we had work on our case. They put together two medical school groups where the surgeons and practitioners come in and they brought together not only the doctors, the pediatricians who treat cases, but they brought in lawyers who advised the agencies and the doctors and they also brought in the public officials, such as myself, our public officials, such as our school board president, and put on a joint conference in which all of the issues from various viewpoints would be dealt with simultaneously. I have been part of two of those. They are very, very effective. They give the management team a point of view that there isn't just one place you can go for help. You need help from medical consultants, legal consultants, public officials, and from politicians who have to deal with the daily pressures. All of those people have to get together to come up with a model. Let me make one other comment. I hate to inform you of this but when we finally went public, all the fears and anxieties and irrationalities that are in any community also occurred in ours and what we had to do was learn how to deal with them very rapidly, and a couple of comments in that regard -- as my colleagues have said, caring, I think, is a very important element. The impression that the public officials and the administrators could put forth that we really cared about this child and the family helped immeasurably and the fundamental thing that carried it in our community was a rather simplistic philosophical point of view. What if it was somebody in your 120 family? What if it was your child? What if it was your spouse? How would you want it dealt with in your community? Once that viewpoint was sold to children and to parents, that is the way they wanted it handled. They wanted it handled as it was somebody in their own family. Finally, putting it in the proper context, I think, can help. For some reason, this disease is not, in my judgment, being put in the proper context. I will give you a very good example. One of the questions we dealt with from the audience was, "Dr. Gussner, Superintendent of the Schools, can you guarantee 100 percent that my child is safe with that child in your system?" Well, I had to think about that, but I couldn't guarantee a child coming to my school safely everyday on our school bus. I couldn't guarantee it on our playgrounds. I certainly can't guarantee it in our gym classes. I can't guarantee it in our chemistry or biology labs. I have dealt with fatalities in the public sector and at the schools in my entire career. I can't guarantee anything and I think we sometimes forget to put it in the proper context. MR. STEIN: May I add one other comment? I think the idea of working with community leaders has been mentioned. If I recall the press stories from Arcadia, Florida, the result was not as happy. Both religious and political leaders were not at all supportive and that, I think, went a long way towards making that situation the kind of situation, which was susceptible to exploding in the way it did. Another factor is the media. Here, I think that from what I have read about the experience in Denton, it was decided that it was a "non-story." That is very unusual. If by working with reporters and especially with editors the idea can be gotten across that an HIV-positive student in school is a member of the community who is in trouble, and not that this is a story to be blasted over the front pages, then there will be a positive result. CHAIRMAN WATKINS: Dr. Lee. DR. LEE: Mr. Schulman, you have opened up a -- I don't know whether it is really the place, but you opened up an enormous topic here with this euthanasia with patients with AIDS and this hospice business and so forth. I do cancer work. I also take care of people with AIDS and it is my observation that the overwhelming mechanism that people deal with these major problems, i.e., death is denial. Using the "I want you to understand about death approach" in my hands almost always leaves a very unhappy 121 result. This goes right across the board. If Admiral Watkins is at the Battle of Midway and he has his sailors going up all around him, it is not useful to tell him, well, let's try to understand death and accept it when it comes. Denial is the way people operate. They are not going to die. When the marines went into Iwo Jima for two miles in hip deep water with machine gun bullets, they had to assume that some miracle was going to happen and they weren't going to get hit e You are aware of the enormous furor over the article in the JAMA -- what is your euthanasia opinion? MR. SCHULMAN: Let me comment on death more generally for a moment in light of what you have just said. We are in dangerous territory here. I remember when Elizabeth Kubler-Ross' book first came out. Within a few short years we started hearing reports of nurses saying to their co-workers, "You know, I have got a patient over in Room 202. He is not going according to the book. He slipped past denial and he is going into bargaining." We face tremendous dangers as we begin to deal with death. I want to take the suggestion that you are making, which is that denial is the most appropriate coping mechanism, and take that on for a few minutes. My involvement with my own family situation occurred two years after Quinlan. A few years later, in 1986, a California case, the Elizabeth Bouvier case, held that it would be lawful, stemming from our right to control our own bodies, to refuse medical care, even if it foreshortens our life. One of Bouvier's attorneys was a colleague of mine on the Bioethics Committee of the Los Angeles Bar Association. I had begun talking about hospice three years after Quinlan. That had been an explosive time to try to get people to talk about why decisions at the end stage care of life were problematic now and never used to be. Pneumonia used to be the old man's friend and but with Quinlan we realized that our technological capacity has far outstripped our moral understandings of who we are. I have asked my colleague several times to meditate on how stunning it is that the Bouvier case, twelve short years after Quinlan is now rapidly adopted throughout the country without hardly a ripple. Let me give you a different example. There is quite likely going to be on the California ballot in November of 1988 a proposal to legalize active euthanasia. The organizers of this, some Beverly Hills attorneys, spoke to our Bioethics Committee 15 months ago and indicated that they had a five year 122 plan for getting it onto the ballot in California. They are now probably going to get enough signatures to get it on ! in November. That is how rapidly attitudes are developing. The useful coping mechanism of denial which is appropriate in the time of war or during surgery, if adopted as our only attitude, . will keep us blind to a series of problems which are engulfing us, whether we see them clearly or not. The point that I try to make in my written testimony on AIDS euthanasia is one that began to seep in a few months after I began my work as an AIDS discrimination attorney. In November of 1986, I had a chance to consult with a number of other ethicists, both here and in England, to share my concern that I hadn't seen discussed in the literature. My colleagues each said they had the same creeping, horrific concern but were not prepared to speak about the issue publicly unless an alternative vision could be constructed. very simply put, we have gotten used to the notion very dangerously quickly that it is rational for people at the end stage of a trajectory of terminal illness to make a decision to refuse further care. In any one individual case, that may be absolutely supportable, but we are witnessing a qualitative change about this. So far, those have been individual issues. But in California there is a tremendous hunger for people to have an answer to the abandonment and despair they understand exists when you are being cared for in a chronic care situation, in an institution where the people who are caring for your intimate needs are hired hands. DR. LEE: You understand, though, that, for instance, the AMA is going to be taken to court here and they are going to be forced to divulge the name of the doctor who wrote that article and the authorities want to try him for murder. This is the atmosphere you are dealing with. MR. SCHULMAN: My point is not that I -- I think that article is horrific -- my point -- DR. LEE: You thought it was horrific? MR. SCHULMAN: Yes, absolutely. I am in no way supportive of euthanasia. My thesis, pure and simple, is that if we -- and you folks are the spearhead of this -- if you choose to recommend that HIV-related health care be primarily institutionally-based, rather than home-based, I guarantee you that people receiving that kind of chronic care in institutions will exercise their emerging legal right to refuse care and will opt out early, earlier than if they were receiving the same kind of care in a home-based setting. We have anecdotal information about the extraordinarily high rate of suicide among people with AIDS. We 123 have anecdotal information that people in similar health stages being cared for at home in San Francisco are choosing to take palliative and aggressive care longer than people similarly situated in institutions. My point is a simple one. If we choose to continue the model that we began to develop in earnest in the mid-sixties with elderly care, to choose to deal with chronic care problems by institutionalizing people rather than taking on the much more difficult task of figuring out how to enable these people to stay at home, we will, without uttering the word once, have created a de facto euthanasia policy in our culture because it will be rational for people to opt out early rather than receive chronic care in institutions. Receiving care, instead, from your friends and family, supported by professionals, is all the difference in the world. The San Francisco model of home-based AIDS care is dependent on gay volunteer labor, which has no correlative anywhere else in the country. How can we find the volunteer labor necessary to help deliver chronic care at home elsewhere? My argument is that we can find it through America's religious institutions. We can coordinate the volunteer labor necessary and by drawing on the religious ideology of virtually every major religious group in this company to develop a new ethos of caring, and not merely for HIV-infected people. Ultimately, we are talking about another way of approaching how we take care of most chronically disabled people. My first thesis is that institutionalization by its very nature is inhumane. My second thesis is that there are ways for us middle class people to interact, to change our life styles very slightly, so that in addition to going to video stores to pick up videos and to aerobics classes, it wouldn't be too hard for us to adjust to putting in a couple of hours every week folding laundry or making a meal or doing some dishes in the local neighborhood chronic care environment. DR. LEE: My next question is fairly weighty, too, so let me defer and I will go on to somebody else. CHAIRMAN WATKINS: Dr. Primn. DR. PRIMM: Mr. Chairman, I just have a couple of comments to make. Certainly, each of you talked about compassion and courage, and certainly planning and preparation as things that one should do before trying to institute a program or get a child in school and so forth. 124 I also heard the use of the term "victim" and one of the terms that is considered rather derogatory by those people who might be infected with HIV or who have AIDS is the term "victim." May I suggest that in your writings and your suggestions that you delete that term when you refer to a patient, who might be infected with the human immunodeficiency virus or who might have an opportunistic infection and have AIDS. Also, when you talk about terminal illness, certainly people who have full-blown AIDS are not necessarily terminal nor when they are infected with the virus are they necessarily terminal. So, I think, too, we should take great caution and delete that from any of our writings and our references because it is insulting to those people who might suffer with this disease. Just a comment, and I think what you have done in each of the communities that you serve has been tremendous and certainly I will take some of your suggestions and try to insist that this be done in communities in New York that I serve and the rest of the nation. CHAIRMAN WATKINS: Dr. SerVaas. DR. SerVAAS: I want to congratulate Dr. Grant and Dr. Gussner. That was like a breath of fresh air to hear those encouraging remarks. I had a couple of questions. One, do you think that the emphasis on fear of being tested, voluntary testing, and the press making a big lot of publicity about some of the discrimination cases might be causing people to go underground. I understand there are some hotlines that tell people not to go to be tested. Unless you tell them you want to have a baby or something like that, they encourage you to re-think it because of the dangers of knowing. As a medical person, that worries me a great deal. My question, I think, is in the hemophiliac children -- I seem to remember being told by the National Hemophiliac Association that there are 10,000 hemophiliacs in the country now infected and that they know of 50 discrimination cases out of that 10,000. If that is the case, are we putting far too much emphasis on the discrimination cases and not enough -- and, of course, the press doesn't have a story if there is nothing happening. Is that a bad thing for the people of the nation to be told how bad we are all the time and can we not be more positive with church, and as Dr. Schulman said, getting people out, feeding and using the compassion that you are talking about? 125 In regard to Mr. Schulman's comment, my question is in England I heard very recently that if you are 55 years old, it isn't euthanasia that you are talking about there. It is talking about if you have kidney failure. You cannot have a transplant if you are over 55, then you die very pleasantly in uremic failure and you are finished at 55 because they have run out of funds in their socialized medicine. So, I wonder, have you thought that through as far as if it is cheaper to do home health care? Do they have that in England? And how can we make sure that we get the home health care and get the people volunteering so that we don't find ourselves in another five years where we can't do kidney transplants or dialysis. You can't get dialysis in England, I understand, if you are 55. That is pretty bad. DR. PRIMM: Or in my neighborhood. DR. SerVAAS: Well, that is terrible because that is a marvelous miracle of medicine that keeps people alive. I remember when we had to have a minister and a doctor and a lawyer and an Indian chief to decide who lived and who died because we didn't have enough money for dialysis for everyone. and I remember that very well and then the government paid for all dialysis and it cost 1.8 billion a year and I think that is great because we do it for everyone, but now in England they don't do it for everyone anymore. So, we have so many things to think about and how at the same time we can get the volunteers all working so that we don't run into something even worse than euthanasia. MR. SCHULMAN: I think Dr. Primm's comment is really correct. The issue really isn't a matter of making any particular technology available but recognizing that what the epidemic is forcing us to do in health care, as it is forcing us to do in so many areas, I think your response in analyzing correctly is to recognize that the inequities exist. We offer extraordinarily expensive technological miracles to groups with certain diseases and have failed to take on the fundamental issue of providing good prenatal care for inner city people, for example. The whole issue is really summed up in the notion of inequitable health care delivery. My proposal is a way of trying to trump, to use an expression from the legal thinker Ronald Dworkin these inequities. The vision that we create a de facto situation where we urge people to opt out early because they are getting in the way is my attempt to create precisely the kind of motivation in religious and otherwise morally-concerned committees to say, "Wait a minute." My argument to you is that AIDS is an acute crisis layered on top of a set of chronic 126 problems. ‘The danger is that the acute crisis will force us into some very dangerous directions. But my challenge to you is to recognize (as you did with your drug recommendations, that the acute nature can force very creative restructuring. The issue has to do with people feeling abandoned and people feeling that there is inequity as to who gets access to what kinds of care. x“ Since we are going to have to invent a system of delivery from scratch -- there weren't a community of HIV-infected people ten years ago -- my challenge to you is to take the opportunity, take the startling vision that I suggest in the end points in my written testimony and use it as a motivating factor for understanding why we have to ask the harder and the deeper questions. One last comment: I was a community organizer in Roanoke, Virginia before I went to law school. Because of that experience I have had occasion to think about what a hospice would be like in an inner city area. The fascinating thing about creating good, home care programs is you necessarily empower people. When you deliver home care where the family is the unit of care and you have interdisciplinary health care teams going in to teach the family what to do, that is salutary for all of us, but particularly for poor people for whom professionals and institutions were primarily people who controlled their lives. It will be dynamic the day we have inner city community people discovering doctors coming to their door and saying, "Let's see how you are doing taking care of dad. What can we do to teach you how to do it better?" I think that is the challenge. I think the medical ethics questions that you are raising are subsumed in part of this issue. DR. SerVAAS: Could Dr. Grant answer the question about the hemophiliac incidence of discrimination? DR. GRANT: I am not familiar with that. DR. GUSSNER: If you don't mind, I would like to answer several of your questions simultaneously, but I want to preface it, if you don't mind, very briefly. I think as a Commission you have, in a way, two responsibilities. One is the broad, global responsibility of general policymaking and so forth, which we have been talking about a lot. Eventually, that will give a direction that will be long tern. But as a public school administrator, I happen to know that when I am dealing with long term policy issues, that 127 sometimes doesn't help the child that has to be in the classroom the next day. I want to focus a little bit on the problem of what is happening day in and day out to people with the disease, from very concrete experiences. So, I hope this will be helpful. Number one, there is pretty good evidence in the public school sector that if you take the policy of exclusion of. the child, which usually leads to identification because if you are excluding you have identified who the child is or if it is an employee, the same thing. There is pretty good evidence now that that has never worked. Not only does it not work, it identifies the child or the patient. It also identifies the family. It is divisive to the community. They now have a place to focus their anxieties and fears and you never quite recover from it. On the other hand, the policy of inclusion, keeping the person on the work force, keeping the child in school, maintaining the confidentiality, we now have enough evidence to know that it has worked virtually every time. In the exclusion Situation, there has been litigation, there has been liability claims, both of which have been divisive to the community. On the other side, there has not been a single case, a single piece of litigation, that has been divisive to the community. Three other points. When our child and family came forward, they had already had six months of counseling as a family on how to deal with this problem. Believe me, the biggest problem we had within 24 hours in maintaining confidentiality was the young child finally having a burden taken off his/her shoulders and being able to tell all the classmates "I am the person and I am going to die." We had to deal with that throughout the school. Now, a lot of kids claimed that. That was the good news or the bad news, depending upon your perspective. So, the staff had to deal with the problem of people wanting to be, indeed, the person who the attention was drawn to. So, we had to deal with that and we were prepared to deal with it because schools deal with it day in and day out. Third, the testing issue is a fascinating issue. Once we started educating our community, which included students, staff, other parent members, we had three major testing problems. We had staff, either because of their own fears and anxieties or because of their previous medical histories, where they might have had to have a transfusion or a major operation before 1985, we raised their anxiety levels and they asked or needed to be connected to where they could have possibly testing and counseling and, therefore, relieve that anxiety. 128 We had people on our staff, that needed that. We had people in the community that needed that. We had people in the family, the siblings of the child who needed that. So, when you: talk about those people wanting to be able to maintain their confidentiality and yet have access to that kind of testing to relieve fears and anxieties, it was a necessity and I don't think we could have done it without having cooperation to do it with complete freedom of confidentiality. Finally, we had to ask the fundamental question: Who would our staff and who would the parents in our community asked, or received confirmation from, as to whether they believed what we were trying to tell them. We discovered that they are either going to call their doctor or they are going to call their clergy. So, we immediately set out to educating the clergy and pediatricians in our community and we got full support from them to do that. That decision turned out to be a very key element because they were the first people called by every member of our staff and every person in the community who held doubts. So, my point is you can talk about the broad policy issues, but you also have to deal with what is going to happen the very next day and sometimes the practical solutions the next day don't make a lot of sense in regard to the broad policy issues. CHAIRMAN WATKINS: Do you have any dentists in Wilmette? DR. GUSSNER: Yes, we do. CHAIRMAN WATKINS: Did you talk to them? DR. GUSSNER: Yes, we did. It was a real problem. What we found in our community is that our medical people were not as well-educated about the disease as other people within our community. In service and staff development within our medical community was behind other aspects. CHAIRMAN WATKINS: Did you agree with our focus in our interim report on health care provider education being the number one high priority in the entire field of education? DR. GUSSNER: Absolutely. DR. SerVAAS: Dr. Grant. DR. GRANT: I would like to make a comment about hospice and a comment about testing. Testing first because it is easier or more difficult. 129 The public health physician has a real dilemma with testing. We want to know everybody's status without them knowing it. We want to know who has it and who doesn't and that is not going to be possible unless we get a better, quicker test and cheaper and we can do it more routinely and I am not sure that is all that good at this point because of the long incubation period. We have found in Maryland that if we have testing centers where we take the person's name and record it, we don't get a very good response. Some counties have anonymous, completely anonymous testing centers and there are overwhelming requests. So, depending on what your goals are, that is the way to go if you want people to have good access to confidential testing. That is possible to do. On the subject of hospice, I can say that it works extremely well. Most counties in Maryland have home health programs and then they have hospice programs connected to then. This is a very popular program. People come out of the walls. We see people on advisory boards that have never volunteered for anything in their lives. In both of my counties we have hospice boards that have so much money they are coming to us and asking us what to do with it. People are beginning to leave money. They are beginning to say don't give them flowers, send money to the hospice foundation. The American Cancer Society is very upset with that because they are not getting the usual donations. It is an extremely good program. Where our home health skilled nursing leaves off, then this volunteer hospice kicks in. People love it. I hope it will be around when my time comes. I hate hospitals. I think it definitely is a way to go. It is not only humane; it is cost effective. I think the present -- I hope it is changing -- the last figure I heard was it cost $200,000.00 to take care of a terminal AIDS patient. I don't know what we reduce that by with home health care, but I am sure it is quite a bit. This has to be the way to go. We are going to double the national debt if the million or more people with AIDS infection all die and cost $200,000.00 apiece. It is the only sane way to go. DR. SerVAAS: I wish we could clone you as a public health officer. We need you all over the country. MR. STEIN: One of the things which I have learned in some of the work that I have done in the schools, and it applies to other situations as well, is that sometimes school board physicians may be the worst people to deal with a problem like 130 this because they don't understand the issue. I have heard about several other individuals that they wish they could be cloned,’ too, and I certainly would add Dr. Grant to the list because having a person who both can understand the medical and epidemiological aspects and can talk about it in a way which is not delivering a lecture, but makes it clear that you recognize you are dealing with people's fears and concerns is a very valuable commodity. Second, if I can put some of the things that David has- said and some of the other questions about providing a care system outside of the hospital into a today context, there are some case managers who have said we cannot manage cases because we do not have any place to put them. It is as simple as that. Nursing homes, very usually, for a whole variety of reasons, including discrimination, do not want to take people with AIDS. In Minnesota, the Human Rights Commission was instrumental in getting a letter of intent from a number of nursing homes in the northern part of the state that they would take people with AIDS because they were threatened with loss of licenses if they did not. That is a piece of paper; hopefully, jt will go a long way towards having the people with AIDS committed to nursing homes when they are needed, but that is only one set. There are some people who don't have families to fall back on and for those people group homes are very important. There are situations in Washington, D.C. in which the Whitman-Walker Clinic has been very successful in putting into place six or seven smaller residences, smaller so that they would not violate the zoning ordinance of numbers of individuals Living together who are not related, and they were able to do that. They also went into the community and said we have the right and we are going to put a place here but we want to,talk to you about it. What are some of your special concerns? Some people were concerned about garbage. So, they arranged for a separate, private garbage pick-up. That has worked. In other communities, that is a problem in which group homes have been fought against in some places. In California, in one situation a man was moving out of his house into a smaller residence and wanted to turn it over to a local group to be used as an AIDS residence and the whole neighborhood was up in arms. And that is because, in part, they weren't prepared. Nobody thought about dealing with them ahead of time in the way that we have talked about dealing with communities ahead of time in the school situation. If we are going to have a health care system, which is going to get the costs of caring with a person with AIDS down 131 from 200 or $147,000.00 to the 40 or $50,000.00 that other communities have talked about, where they do have systems in place, then we have to recognize that these situations have to be dealt with up front and they have to be anticipated because without it, we will keep people at 200 or $147,000.00. We will not give them a system which provides a variety of kinds of care, which is suitable for the way in which they are feeling at that time and through Medicaid is going to cost the United States a great deal more than it needs to. CHATRMAN WATKINS: Dr. Lilly. DR. LILLY: I have probably an inappropriate question, to which I am not clear that there is an answer. I am just wondering, from the success of the undertakings that you have described, how would you suggest -- we were presented this morning with a case in Tennessee where a young fellow, who is HIV-infected, is undergoing very severe discrimination. Would you have any suggestion for how one might handle a situation that was mal-handled in the beginning? It was not handled in the way that you have handled the ones you have described and what types of remedies could you see for handling that type of situation? DR. GUSSNER: A couple of comments about that and I think maybe what would help would be to point out there are a lot of pitfalls that can destroy confidentiality. And I guess I would -- I feel so strongly about the maintenance of confidentiality that I think if anything else came out of this Commission, to assure anybody in the public or private sector dealing with a case, that confidentiality be maintained at all costs should be -- is critical, because of exactly what you are talking about. ¢ I am not trying to be evasive. I will come back to your question, but let me give you some concrete examples, of what you have to deal with to maintain confidentiality. For instance, some of the suggestions of -- the National Centers for Disease Control -- have a very conservative approach for dealing with school-aged children. If the child is a behavioral problem, bites, if the child has open sores or lesions, if the child cannot control bodily functions, then we are not supposed to keep that child in school. That immediately arouses fears in the community, even though there is pretty good evidence that it can't be transmitted in any of those three ways. By saying that is what will lead to exclusion, immediately brings out the fears in the community that you have got to have separate water fountains, separate bathrooms, separate utensils and so forth, even separate trash cans. 132 We had to make the very hard decision that, no, we are not going to have any of that. We are not going to allow that to happen because that would identify the child. We are not even going to tell you the sex of the child. We are not even going to tell you the grade level of the child because all of those are identifying variables that would allow somebody to focus in on the child and the family. Therefore, what did we have to do? We had to train every single employee of our system how to deal with an involuntary spill, with a bloody nose, with anything that could cause fear of transmission. We had to train them, give them proper materials and give them the security so that they could deal with it no matter who it was. We trained them to assume that everybody in our system of 2,500 was the victim and, therefore, if the superintendent got sick because he was nervous in the crowd, then you would clean it up the same way as if he was an AIDS victim. That is the way we trained our employees. That is how we maintain the confidentiality. All the tricks in the trade -- the reporters would say I will give you a list of names and you confirm or deny. We woulda not do that. We would say we would take the list and then we will give those to the people so they know their names have been used. Then, they wouldn't give us the list. So, we learned a lot of strategies for dealing with maintaining the confidentiality. Now, let's say it is broken. My best advice to the person would be to try to leave that area and go somewhere else and start over again. I know that is harsh but I had to consult with a parent who wanted to, in all good conscience, become a foster parent for a young AIDS baby and thought the process would be to go into the community and educate the community that this is what we as a family would like to do and why we think this community can accept it. Within a matter of 30 days, the whole community turned around against their positive motivation and they had not yet even gotten the child. That family had already concluded that they were going to have to leave that community and they did not even have a Child or a member of the family with the disease. They were thinking in good conscience about adopting a baby, who was identified as having AIDS. That is a little harsh but I don't see how you can reverse the divisiveness once it has been created. DR. GRANT: I have had a different experience, of course. Mrs. Smith chose not to be confidential and it seemed to work for her and I would say the health department and the 133 department of education used that occasion for a wider community educational effort and that seems to have worked. There may be dozens of children in Maryland who are in schools who have AIDS infection. All the others that I know of have been kept confidential, but there is that kind of simmering underneath the surface of who really is it, how many are they and are my kids going to school with them. I dpn't know which is the best way to go. I guess it is dictated by the circumstances. At one point we advised Mrs. Smith to go somewhere else, the little black boxes are also used! for diabetes, and she absolutely rejected that and preferred to make a stand and help educate the community, which I think is laudable and it was successful. I didn't think it would be, but it is. So, I can't answer your question. DR. GUSSNER: I would add that Dr. Grant -- I would agree with him a hundred percent. I would hope someday that every child or every victim can be treated -- and I am sorry to use the word -- but everyone can be treated in the same way as we treat any other individual that has a disease that enters a public institution. The key to that is that we do maintain confidentiality. If you think about it, we do not give out the test scores of the youngsters who are gifted. We do not give out the test results of youngsters who have a terminal illness and possibly are attending schools. We do not give out any confidential information about any student or employee. Maybe that is where we have to come down hard to order to eventually get to the point where our communities are handling it the way Dr. Grant has mentioned. MR. STEIN: What do you do if you do know the name of the kid? I did not hear the discussion this morning, but there are things which can be done. I think it is possible to bring out expert medical advice as quickly as you can. Have both large group discussions and small group discussions for people in the school. If it is the beginning of the school year, one thing which was done in a situation that I was involved in was to say that there was going to be a lottery for the placement of students in classes at the beginning of the year. If there were four third grade classes or first grade classes, they were all drawn by lottery. That helped to allay charges that a child was stuck with the HIV-positive kid. It was all done in a random way. Then there were special class meetings ahead of time for the class and the parents of the group in which the kid who was identified as being HIV positive was located. 134 We also dealt with the press. The press was not allowed on school grounds and that is something which is done in other situations as well. But at the same time, the superintendent had frequent press briefings for the press somewhere else, at the superintendent's office. The press were kept fully informed and they appreciated that, but it does in a way become a non-story. In THE NEW YORK TIMES there was a picture of a kid going to school in Pennsylvania and he was identified. This is "Johnny Jones" (not his real name) going to school on the first day of class. I was standing ten feet away from that and I couldn't tell which was the student in question and I never had met the kid. I couldn't tell who it was because all the kids got off the bus and went into their classroom. The next day THE TIMES printed a retraction saying that they had identified him in error. They just tried to identify the name of the child. I think that shows that you can deal with that situation. It is a lot harder and you may not be successful many of the times or all the time, but I think there are things, which can be done even after the fact which should be attempted because it is important -- in many states it is required -- that a kid be able to go to school. You will never be able to be convinced that you can change people's attitudes, but you can work hard at trying to get them to change their own perceptions of the dangers involved. DR. GUSSNER: One postscript, if you don't mind, please, because I think it reinforces what both these gentlemen are saying, and I don't want to -- I do want to leave with a positive thought -- within 30 days of our going public and our starting the education of everybody in our community, the family of this child decided it was important to invite all the parents of the child's classmates to their home to let them know who they were, how their child contracted the disease and to have some of their own questions asked about their children being in this child's class. The pediatrician who dealt with the child was available at the meeting and we had a school social worker and we had our school principal there. The reason I am telling you this story is that it now means that all the classmates and all the families know the name of the child and the family and they know the particulars about the case. Fourteen months later nobody has broken that confidence. MR. SCHULMAN: Let me say one more thing about confidentiality. In the City Attorney's Office in Los Angeles, we have handled close to 250 discrimination complaints. One of the most disturbing was a man who was HIV-infected, who went 135 into a hospital for a non-AIDS Situation, but like a good patient, told his health care workers that he was HIV-infected. His nurse was suddenly inspired to begin to do AIDS education of his hospital visitors, some of whom were his co-employees, who quite naturally went and told the employer and that man lost his job. I do a lot of work with medical groups. I have found it very important to be historical about the role of confidentiality. It used to be in the law that if you revealed that somebody had syphilis, even if they did have syphilis, you could be sued for damages because you; injured their social standing. We have seen a revival of those kinds of lawsuits under that old libel per se rule regatding AIDS. I ask medical care people -- I think they are the linchpin in regard -- whenever I talk to them, I ask them to nod their heads if they have ever walked down the hall and, instead of just referring to their patients anonymously, whether they refer to the Mr. Jones, the hemorrhoids in Room 332. Heads always nod. We have a generation of health care workers who are not socialized to remember that certain diseases can destroy people's social standing. Syphilis, in some circles a few years ago, become a badge of sexual prolificness rather than something that ruins somebody's social Standing. We need to remind medical care people that certain medical information, which they need in a health care setting, must to be more carefully protected than many hospital systems currently protect that information. They have gotten sloppy because there were no consequences to most medical information leaking out. When George Brett revealed that he had hemorrhoids on the eve of the World Series, he didn't sue the doctor for revealing it. I think he may have gotten an advertising contract for Preparation H. We have to remind health care workers that they have gotten sloppy because most medical diagnoses did not insure people's social lives. We have got a new one on our hands and we have to remind medical care workers that there is a social context to the medical issue they are working on. CHAIRMAN WATKINS: Mrs. Gebbie, you had a question? MRS. GEBBIE: With all due respect to all of the attention on schools, by far the majority of the people involved with this epidemic are adults, which means we do not have the handy social institution and structure of the school to turn to, unless it happens to be an employee of the school system but, again, that is not going to be in the majority of the cases. I think we really need to explore further what are the equivalent social institutions that pr. Grant and his counterparts across the country can turn to for the kind of 136 4 tO issues we are seeing here around the school child for all those other people who need protection against discriminations and need support. If we only straighten out all the schools and do it wonderfully, we are still stuck with an immense burden. MR. SCHULMAN: The City of Los Angeles is working to pioneer that as an employer. After all, the City Attorney is also the attorney to the corporate entity, the municipal government, which employs 33,000 people. Our AIDS program sets two goals, not one, not merely teaching about the virus. As I indicated in my opening remarks, the second co-equal, goal is teaching about AIDS legal issues, teaching why confidentiality is crucial, teaching what antidiscrimination means in a practical context. I know corporate attorneys who are advising their corporate clients that it is probably appropriate legally for them to implement AIDS in the work place programs, not merely because it is a good guy thing to do for the employer, but that it will lower liability later on when an HIV situation arises. Well, you know, it is always nice for us to be good hearted, but it is also very motivating when we see liability hovering over the surface. I mentioned the two goals that we have set. Let me tell you the three steps we are taking to reach them. The first is the one that most corporate entities with AIDS programs are taking. Get together a good AIDS 101 road show and get it to all the workplace sites. But the other two steps are ones that I have not yet heard any other entity adopting. What I am about to suggest can be equally used at universities, by other governments, by corporate settings and any work place setting. And to answer your question, I think the only place adults are going to really pay attention to AIDS is in the workplace. When I go home at night, I don't want to hear Dan Rather talking about AIDS. I turn on the Dodgers. I think most adults are going to only really pay attention to the issues that we know every adult needs to know if they are encouraged to learn it in the workplace. The second step ordered by the City Council, after the order presenting AIDS information in every workplace, it is the request that every department in the city is the request that every department review and revise all the policies and procedures to bring them into line with what they have just learned. City departments are now changing their first aid kits to include latex gloves and one-way resuscitative devices, teaching every employee to properly clean up a blood spill, seeing to it that personnel managers know how to properly tighten up control of personnel files so they are no loner sitting on people's desks to be rifled through. That is order number two. 137 The third step is the most interesting, and more appropriate for local government than for some other entities. The third order is for every department of the City of Los Angeles to review all of their interactions with the public and adapt as many as possible to include AIDS education. One example: Our Department of Transportation provides transportation to sick people. The next time one of these drivers has to help a sick person into the van who is covered with blood, that driver is not going to worry about whether he or she is a gay man from West Hollywood or a little old lady from Pasadena -- although we actually don't service Pasadena -- because the drivers are learning just what was discussed earlier: you do the same thing with everybody. If you see blood and you have to handle that person, you are going to put on gloves, no matter who it is. Here is the educational component for the public. The drivers are also being encouraged to turn to the other passengers in the van and say, "You may be wondering why I am putting on these gloves. Well, let me tell you. Not to worry, there is only a very tiny risk of transmission. But the city has asked us to use these gloves to protect us against just that very tiny but theoretically possible risk of transmission that too many are arguing are reasons composed of more tyrannical measures." The city clerk is reviewing what it will take to include an AIDS mailer in mailing out the tax assessments. Parks and Recreations are going to look at what it would take to put together education programs in the parks. Libraries throughout the city are putting together AIDS educational materials. There are a fascinating number of ways in which local governments in their normal interaction with the public can help explain AIDS to the community through its daily activities. So, we have three steps; work place programs; review and revise policies and procedures; and, take the message out to the community in as many creative ways as possible. I think private corporations could do much the same thing. MR. STEIN: I would first like to state for the recora that this is the last time I am going to let David Schulman go first. AIDS education in the workplace is very important. I was hoping to say some of that in Indianapolis. And I think it is important for several reasons. One, it is where people get paid and they know that it is important to continue to get paid and the issues are not only discrimination by management against an employee. More likely as management increasingly comes to understand the legal rules, the problems are going to involve 138 co-workers unwilling to work with an individual who is HIV positive. | So, If there is a firm policy not only about education but also about transfer, that is going to sink home and people who want their jobs will have that. Second, the reason that workplace education is important is that I believe it will have an inevitable spillover into the community so that if there is a school situation or a housing situation, people having been faced with the issue in the workplace will be more receptive to it. Another ingredient is that people who are providers very rately think of themselves also as employers and whether they are health care providers or law firms or universities, or labor unions -- they don't think of themselves as employers and they don't adopt the kind of employment policies, which they may be preaching to others in terms of advice that they give or the way they carry out their work as health care providers. I think that is another reason why employment education is important. A second group, which is, I think, increasingly coming to realize the importance of education and this is more education by example, are religious institutions. I think that this can be a very powerful vehicle for letting people know that it is okay to be with others who are HIV positive, to open the doors of religious institutions to permit meetings to be held, not to shun people as parts of a congregation and also to get members of parishes, congregations, who perform volunteer work, to offer to them the opportunity to possibly volunteer for an AIDS service organization. CHAIRMAN WATKINS: Thank you very much. We will close out this panel. It has been a very informative one and I think, along with all the other panels today, we have learned a great deal. I certainly compliment Dr. Gussner and Dr. Grant for being on the front edge of preparation for the eventuality that became a reality in your districts. I would hope that others in the nation would learn a great deal from you who have done the thoughtful, hard, continuing work that you all have done to ready the schools for a more compassionate acceptance of those afflicted. We don't see enough of it and we have seen this tragic case this morning in a community that somehow was unable to pull that act together. I think there is some expectation it is going to be a difficult long haul to come out from under that conflict. I want to thank you all for coming and before we close today, I would like to say to our staff that they have done a 139 superb job in putting these panels together today. I think it has been a very important day for the Commission to hear the variety of views that have come in and so well articulated. Thank you to Nancy Wolicki and her team, Leo Arnaiz, Emily Cooke, and to Jane West. I would like to thank Dr. Conway-Welch also for allowing us to witness what pcessibly might have been a baseball game that wasn't on today in Vanderbilt Stadium. This has been a great place to hold hearings and we appreciate not only Dr. Conway-Welch's efforts in getting us set up down here, but also her right arm, Amy Harshman, on her staff, who has worked so closely with us and been such a great help in the past also. So, with those comments, we thank you again and we will adjourn until tomorrow morning at 0900. (Whereupon, at 4:56 p.m., the meeting was recessed, to econvene at 9:00 a.m., the following morning, Thursday, March 17, 1988.) 140