~ re at den ORIGINAL TRANSCRIPT OF PROCEEDINGS NATIONAL COMMISSION ON ACQUIRED IMMUNE DEFICIENCY SYDROME * * * PUBLIC HEALTH AND THE HIV EPIDEMIC ek & & Pages 1 thru 280 Washington, D. C. September 17, 1990 MILLER REPORTING COMPANY, INC. 507 C Street, N.E. Washington, D.C. 20002 546-6666 ah NATIONAL COMMISSION ON AIDS PUBLIC HEALTH AND THE HIV EPIDEMIC Monday, September 17, 1990 9:00 a.m. Interstate Commerce Commission Building 12th Street and Constitution Avenue Washington, D.C. _ MILLER REPORTING CO., INC. 507 C Street, N.E. Washington, D.C 20002 (202) 546-6666 MILLER REPORTING CO,, INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 CONTENTS AGENDA ITEM: 1. Opening Remarks: Chairman June E. Osborn, M.D. 2. The Mission of Public Health: William L. Roper, M.D., M.P.H. Centers for Disease Control David Satcher, M.D., Ph.D. Meharry Medical College Richard Remington, Ph.D. Department of Preventive Medicine, University of Iowa Institute of Medicine Committee for the Study of the Future of Public Health 3. The Public Health Response: Suzanne Dandoy, M.D., M.P.H. Utah Department of Health Association of State and Territorial Health Officials American College of Preventive Medicine Mark Magenheim, M.D., M.P.H. Sarasota County Health Department National Association of County Health Officials William Myers, M.S. Columbus, Ohio Health Department National Association of County Health Officials PAGE 12 20 61 71 78 ah MILLER REPORTING CO., INC. 507 C Sereet, N.E. Washington, DC 20002 (202) 546-6666 CONTENTS: (Continued) 4. 5. Risk Assessment: James W. Curran, M.D., M.P.H. Centers for Disease Control Laurence Foster, M.D., M.=.H., M.S. Council of State & Territorial Epidemiologists J. Mehsen Joseph, Ph.D. Association of State & Territorial Laboratory Directors The Response of Community-Based Organizations: Dan Bross AIDS Action Council Larry Kessler AIDS Action Committee LUNCHEON RECESS 6. 7. Commission Business Adjournment 280 113 124 130 158 169 187 ah MILLER REPORTING CO., INC. 507 C Street, NE. Washington, DC 20002 (202) 546-6666 PROCEEDINGS MS. BYRNES: The meeting of the National Commission on AIDS will now come to order. If the people from the first panel would like to join us at the table, we can begin. CHAIRMAN OSBORN: Good morning. It says on the program that I am going to spend 15 minutes of your time making opening remarks, but I’m not, because we have a very distinguished group of panelists to Jaunch this set of deliberations about public health and the HIV epidemic, and I would like to optimize the amount of time that we have with them, so I’m going to be just about that ibrief. I want to express special appreciation to Con- gressman Rowland for being with us at this exceptionally busy time for him, and I know he will have to be in and out, but we are delighted that he is with us when he can be. This morning’s first panel will be talking about the mission of public health. Dr. William Roper is the Director of Centers for Disease Control; Dr. David Satcher is President of Meharry Medical College, and Dr. Richard Remington, now of the Department of Preventive Medicine at ah MILLEA REPORTING CO., INC. 307 C Srreet, NE Washington, D.C. 20002 (202) 546-6666 the University of Iowa, but with a very distinguished past, as my predecessor at the University of Michigan as Dean of the University of Michigan School of Public Health, among other parts of his distinguished past. Many of you know that Dr. Remington chaired the Institute of Medicine Study on the future of public health, which issued a very seminal report, and we are happy that he can with us to set the stage, along with Drs. Roper and Satcher, for these two days of delibera- tion. Dr. Roper, why don’t you proceed? As I think I have mentioned to you privately, the Commission would be most pleased if you would hit the high spots that you would like us to be thinking about and then have as much opportunity as possible for interaction with the Commissioners. Welcome. DR. ROPER: Thank you. Madam Chairman, ladies and gentlemen, I will be brief, and I appreciate the opportunity to be with you. I am delighted, let me say at the outset, that you have chosen to hold these hearings. It is a very important topic, and as a former State and local health official myself, I am pleased that you have chosen to prove in depth ah MILLER REPORTING CO., INC. $07 C Sucet, NE. Washington, DC. 20002 (202) 346-6666 this subject. Dr. Konigsberg and I were for several years health | officers of adjoining counties in Alabama, and I am pleased that you are taking the time to look at the public health system and its response to the HIV epidemic. As the Chairman and I discovered this morning, when people talk about public health they usually, laypeople at least, end up thinking about health care financing or something else. And I hope you gain a full understanding over these two days of what we mean by public health system. This is important to strengthen the effort against HIV and AIDS; it is also important for dealing with public health problems generally, now and in the future. I will begin by saying that my belief is that the public health system’s response to HIV and AIDS has been a good response. It has demonstrated some problems, some areas that need to be strengthened, but I would begin with thanks to the thousands of women and men who work in public health across the country for the efforts that they have put forward. You'll hear a lot in these discussions about infrastructure, a word that is usually applied in our country to bridges and roads and pipelines, but also applies to ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 public health--public health infrastructures, the system of individuals and institutions that, when they work effectively together, promote and protect the health of the people. And that is really what public health is all about. It is strategies, facilities, resources and people, especially. There clearly is room for contributions from voluntary agencies, from community-based organizations, from other agencies outside the health sector, but fundamentally the heart of the system I’m talking about is the public health agency, a unit of government. Indeed, it is the local public health agency that we are after trying to strengthen. Most of the key transactions that affect the health of people take place in households, in neighborhoods, in communities, so finally those of us at the Federal level are two steps removed, and even State health officials are one step removed from where things really happen at the community level. I believe that the most important thing I can do as la Federal official is work to strengthen local public health agencies across the country. Let me then turn to say how can we do that. I’m not going to focus specifically on HIV and AIDS because you ah MILLER REPORTING CO., INC. 507 C Sureet, NE Washington, DC 20002 (202) 546-6666 are going to be hearing a lot about that later today and tomorrow, but about the general mission of public health and how we can strengthen our efforts. First, it is important to look carefully and realistically at this public health system I have been talking about. It is a variety of systems, different arrangements in different communities, different States. There is not a’single cookie-cutter approach to public health across the country. Not only is it important to know about big urban public health departments like D.C. or New York or San Francisco or Birmingham, where I was health officer, but small communities, counties, where there is a single nurse, a single sanitarian and a clerk, and that is the health department in that community, as you found when you went to rural Georgia not too long ago. It is also important to look at how the public health system is adapting to change--are we focused on fighting the last war, so to speak, or are we looking at the problems that we face now and in the future. The most important thing we can do to strengthen the public health system, I think, is to help exercise leadership, to mobilize public support for this system. ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 346-6666 Admittedly it is a nebulous concept, and it is hard to get people energized, even on the TODAY Show, about something as abstract as a system for public health. I am convinced that the major problem we face is that the public really does not understand what we mean by public health. My guess is that the public things of epidemic control, immunization and health care services for the poor as public health, and anything beyond that is sort of tangential. Although the public is plainly interested in smoking and cholesterol and workplace safety and toxic wastes and so on, the average member of the public usually does not acquaint these with public health, the health department, et cetera. I was on my way to deliver a speech sort of like this back in May. On the airplane, I was asked by the person sitting next to me what I do for a living and I said, "I work in public health." He said, "Hmm. Public health. That’s the people down near the courthouse where the children go to get their shots." And I said, "Yes, sir, that’s public health." And he said, "Is everybody able to get those shots, ah MILLER REPORTING CO., INC $07 C Suect, NE Washington, DC 20002 (202) 546-6666 10 or is it just for poor people?" And I said, "Well, it is complicated, but generally everybody can get the shots." And we talked about that for a bit, and then he said, "Tell me about AIDS and what is going on there." The points that I had framed to deliver later that day, that the public’s perception of public health is epidemic control, HIV and AIDS, immunization and a few other services like that, and health care services for the poor was just played out right on Delta Airlines there as we flew to Charleston. That is a point that I urge you to pay attention to because the public at-large, not just the poor, not just those directly confronted with this epidemic that you are focused on, have a stake in a system that is there in place to protect and promote the public’s health. Let me conclude by talking about some practical things that we need together to do to strengthen public health. First, to build the work force that we need in official public health agencies and in those that assist us in doing our work; training and retraining current workers; educating in schools of public health like the Chairman’s and ah MILLER REPOATING CO, INC, 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 11 others. We also need information, because the fragmentary information that the public gets about what is public health I think impairs their understanding, and we at CDC are working to develop a unified national information system to better explain what public health problems are and what is to be done about them. And finally, we need some money. Finally, we come back to those points over and over again. We need funding at the Federal level, surely; also State and local governments need better to fund official public health agencies. And a point that I would stress to you--it is a conviction of mine that I have had since I was a local health official, but I continue to have it--in our funding, we should first do no harm to this public health system. What I mean by that is in our passion to solve today’s problems, all too often we say we can’t deal with this existing bureaucratic structure; they just don’t understand, or they are not motivated, or whatever, and let’s create a separate system, parallel or outside the official public health agency to focus on today’s problem, whether it is health care for the poor, or HIV and AIDS, or whatever. ah MILLER REPORTING CO., INC. 307 C Street, NE Washington, DC 20002 (202) 546-6666 12 And my plea to you and to the Nation at large is let's build a genuinely comprehensive public health system-- not a patchwork quilt, a variety of public and private agencies. Yes, there is room for community-based private organizations, but they need to be related to official agencies because after all, finally, that is who the public holds to account in meeting the public health needs of the Nation. It is my hope that as we were talking a couple of weeks ago about "Health People 2000" that we will ten years from now be able to attach reality, not just rhetoric, to what we are today saying about public health. Thank you. CHAIRMAN OSBORN: Thank you very much, Dr. Roper, for an eloquent beginning. Dr. Satcher, if you would please go next. I have to keep identifying a little bit with this panel. Dr. Satcher and I share our medical degrees from the same place, and he received a distinguished honorary degree award from Case Western Reserve just last spring. So it is a double pleasure to have you here. DR. SATCHER: Thank you very much, Dr. Osborn and ah MILLER REPORTING CO., INC. $07 C Sureet, NE. Washington, DC. 20002 (202} 346-6666 13 members of the National AIDS Commission. I am very pleased to have this opportunity to participate in this very important hearing dealing with this most critical problem. I bring you greetings from Meharry Medical College and also from the Association of Minority Health Professional Schools, where I serve as President. And I want to point out that the association consists of eight institutions; in addition to the Meharry School of Medicine and Dentistry, the Morehouse School of Medicine, the Drew University of Medicine and Science, and three schools of jpharmacy--Xavier, Texas Southern and Florida A & M--and one jschool of veterinary medicine, at Tuskegee. Together, these institutions have graduated more than 40 percent of the black physicians and dentists who practice in the country, more of 50 percent of the pharmacists and more than 75 percent of the veterinarians. The two major concerns of the Association are 1) with the under-representation of blacks and other minorities in the health professions, and 2) the health status of blacks and other minorities in this society. So it is from that perspective that I address the issue of the mission of public health as it relates to the HIV ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, D.C. 20002 (202) 546-6666 14 epidemic and a concern for minorities. We understand the mission of public health to be that of protecting and promoting the health of the people of the Nation, and I too participated two weeks ago in the mational conference "Healthy People 2000". And given the wery clear objectives for the year 2000, I really feel that the mandate of public health in this country has never been clearer than it is today. However, it is also true that the HIV epidemic represents one of the greatest challenges that our society has faced and therefore our system of public health has faced in many years. And I would like to focus on that challenge from the perspective of blacks and other minorities by first asking the question how does the HIV epidemic impact upon the health status of blacks and other minorities. In 1984, then Secretary Margaret Heckler appointed a task force to look at the health status of blacks and other minorities in this country, and in October 1985, Secretary Heckler reported on that task force work. As you know, most of the data for that report came from the years 1979 through 1981, so AIDS was not really listed as a priority. There were six conditions listed as ah MILLER REPORTING CO., INC. 507 C Street, N.E. Washington, D.C 20002 (202) 546-6666 contributing to the health status of blacks and other minorities and leading to a significant gap in health status reflected in the infant mortality rate, which is twice as great among blacks as others; life expectancy, six to seven years less. But the bottom line of the report was that every year in this country, there are 60,000 more deaths that occur among blacks than would occur if blacks had the same age- and sex-adjusted death rates as whites. And as I said, while the data did not focus on AIDS, it was very clear in that report that substance abuse was a very basic problem running through that data. Since that time, the National Center on Health Statistics has pointed out, using data through 1987, that for the first time in this century, the life expectancy for blacks in this country has actually decreased, and certainly that is related to the AIDS epidemic and substance abuse. As of July 1990, almost 140,000 cases of AIDS have been reported in this country, and 45 percent of them were in minorities, who constitute only 24 percent of the population. For example, blacks constitute 12 percent of the population, but make up almost 30 percent of the AIDS population. And if we look at AIDS among women in this country, blacks constitute ah MILLER REPORTING CO., INC, $07 C Street, NE Washington, DC 20002 (202) 546-6666 16 51 percent; and perhaps even more important, among children, blacks constitute 53 percent. Likewise, the Hispanic popula- tion is overly represented in the AIDS population. The other thing that is interesting as we look at the data and disturbing, of course, in terms of trends is that not only as we look from January 1988 through July 1990 ido we see an increasing proportion of blacks and other minorities; we see an increasing role of I.V. drug abuse. Whereas in 1988, 17 percent of AIDS cases were related to I.V. drug abuse, by 1990 it was 21 percent. On the other hand, in the black population in 1988, 36 percent of AIDS cases were clearly directly related to I.V. drug abuse; by 1990 it was up to almost 40 percent. And if you include I.V. drug abuse in the homosexual and bisexual population it is even greater. So there are four very disturbing trends or concerns. One is the disproportionate impact of AIDS on blacks and other minorities; second, the growing proportion from year to year; third, and perhaps most important, the specific impact on women and children; and fourth, the increasing role of drug abuse, especially I.V. drug abuse, on AIDS. ah MILLER REPORTING CO., INC, $07 C Street, NE Washington, DC 20002 (202) 546-6666 17 But we must also point out, I think, that in many large urban communities, public and private hospitals are being overwhelmed by patients with AIDS and their overwhelming needs, actually tying up the system of health care and therefore affecting the ability of these institutions to be responsive to the needs of patients in general. That also has to be looked at very carefully as we deal with this problem. What are the problems, the barriers that we face in trying to control this epidemic from the perspective of public health? I think there are a few that must be noted. One, I think there is still a lack of awareness regarding the risk and nature of transmission of AIDS, and this is combined with misinformation and misconceptions, and that is reflected in some many instances of specific cases throughout the country. Second, there is this fear of AIDS and of the community’s response, which I think inhibits the early detection of AIDS. People feel the threat of isolation. Then there is, of course, the negative and judgmen- tal attitudes toward the problem because we still have not decided as a society whether we are dealing with a crime, a ah MILLER REPORTING CO., INC. 507 C Street, NE. Washington, DC. 20002 (202) 546-6666 18 sin or an illness, and that certainly affects our ability to deal with this problem. Lack of access to the health care system due to lack of availability of resources, lack of affordability and lack of acceptability are still major problems in dealing with this epidemic; the presence of other sexually transmitted disease and the impact on the transmission of AIDS; and then finally, the general area of poverty and what we refer to sometimes as the culture of poverty, which impacts upon drug abuse and the ability to control that. For the public health system, I think we still struggle with outdated strategies and approaches to dealing with lifestyle challenges which we now face most severely in the AIDS epidemic. I think the failure to develop that community network which Dr. Roper referred to as we approach the population at risk is still a problem; the failure to develop an effective system of public education, maximizing the media and other effective agencies; the failure of the public health system to adequately reflect in its own makeup and hierarchy the communities at risk, especially minorities and the poor--and there is some progress in this area. The ah MILLER REPORTING CO, INC. $07 C Sueer, NE Washington, DC 20002 (202) 46-6666 19 combined problems of poverty and a health care system which rations access by restrictions and by inconvenience is another problem, and finally, the inability to effectively separate the science of public health from the politics of health, an inability which reflects itself in our attitude toward sex education in the schools, and we are dealing with a population which, if they do not receive that education in the school system, probably will not receive it. So we have to get over some of those political barriers. The same thing relates, of course, to needle exchange, the provision of sterile needle programs, and whether in fact we can look at that issue scientifically as opposed to politically, as we did with this problem. In conclusion, then, I would make the following recommendations regarding the mission and strategies of public health in dealing with this epidemic. First, we do have to foster the development of public health networks that involve the major institutions of those communities involved, including churches, schools and other organizations. Second, culturally-sensitive and nonjudgmental public education programs must be implemented, and in many ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 346-6666 20 cases they must be targeted to high-risk individuals and groups. Where possible, peer relationships must be utilized, and the media must be maximized. Third, safe, confidential, accurate and nonthreaten- ing HIV testing/screening programs must be available for the early detection of HIV infections, and these programs must be affiliated with similar counseling programs. Fourth, as a Nation, we must move rapidly to deal with the problem of access to health care, including health promotion and disease prevention, and the growing menace of poverty and its impact on communities at risk. And finally, we must separate the science of public health from the politics, which so often prevent us from effectively utilizing the resources we have or of appropriate- ly targeting those resources to communities of need. I Again I thank you for this opportunity to speak before the Commission. : CHAIRMAN OSBORN: Thank you very much, Dr. Satcher, for that important testimony. Dr. Remington. DR. REMINGTON: Thank you, Dr. Osborn and members of the National Commission on AIDS. It is a pleasure and a ah MILLER REPORTING CO., INC. $07 C Sereet, N E. Washington, DC. 20002 (202) 546-6666 21 privilege to be with you today to talk about my favorite subject, public health, and the mission of public health. I have been asked to talk with particular emphasis on the Institute of Medicine’s report on the future of public health, how that may apply to the AIDS epidemic, and I am pleased to do that. I think a good way to begin would be to quote your Chair, Dr. Osborn, when she was writing last month to friends of the University of Michigan School of Public Health. She said: "I often say that the only really new thing about the AIDS epidemic is the virus, since the intense problems it has provoked were all old ones which we had failed to solve previously. This is evident everywhere the Commission turns, as for instance in issues of homelessness, rural health care, prisoner health, and of course, the growing inequity in access to care for inner city and disadvantaged populations." That is the end of Dr. Osborn’s quote, and as I said, it could be a very valid theme for your discussions today, I think. She emphasized in that statement, I believe, that public health itself has gotten itself and has been helped into a kind of crisis, and that is what this report said two ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, D.C. 20002 (202) 546-6666 22 years ago. We used the word "disarray" in that report, and we got a little flack about that but I don’t think that is an exaggeration at all. I think public health, as we saw it, travelling coast to coast and border to border, is, was then, and still remains, in disarray. We are in doubt about what public health is, we are in doubt about what it should be, and we've simply got to get our act together if we’re going to be able to deal with whatever next crisis follows the AIDS epidemic--and there certainly will be one; the only question is what will the crisis be. We have got to deal with this one, and we have got to deal with all of the crises that have been too long neglected--I'll get back to that in a little bit--and we’ve got to deal with the ones that come. So the Institute-of Medicine a few years ago, with sponsorship from the Kellog Foundation, the Centers for Disease Control and the Health Resources and Services Administration commissioned a panel to look into the future of public health, to examine its present status and then to go forward and talk about the future. In doing so, we looked at a great deal of printed information, available reports and data from Federal and State and local agencies. We conducted ah MILLER REPORTING CO., INC $07 C Steet, NE. Washington, DC 20002 (202) 346-6666 23 week-long site visits, traveling throughout six States selected to really represent a whole series of important variables, we believe, North, South, East and West, rural and urban centers; we didn’t simply stay in the State capitol or in the State health department--we looked at those, of course, but we traveled widely in those States. We held four public hearings on a nationwide basis. We commissioned a series of papers. We pondered and considered, much as you are doing--in fact, your activities remind me somewhat of what we did during that period of time, and I congratulate you on--well, I congratulate you on the beauty of this conference room, but I congratulate you on getting out of conference rooms like this and going to rural Georgia and the rest as well. What we said on the basis of that investigation in our printed report was that "this Nation has lost sight of its public health goals and has allowed the system of public health activities to fall into disarray. In the committee’s view, we have let down our public health guard as a Nation, and the health of the public is unnecessarily"--unnecessarily- ~"threatened as a result." Now, that is strong language, but I have a feeling ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 24 that is what Dr. Osborn was saying in her quote. I have a feeling that that is what you see as you travel the country. We have let down our guard, and now we are trying to play catchup on this problem, and we are doing the best we can, perhaps--that is controversial--but we have got to get with it. Yet we recognized, as Dr. Roper and Dr. Satcher have said, that an impossible burden has been placed on our public health professional folks trying to work out there, and we said in our report that that impossible responsibility has been placed on America’s public health agencies to serve as stewards of the basic health needs of entire populations, but at the same time to avert impending disasters and to provide personal health care to those rejected by the rest of the health system. One wonders not that American public health has problems, but that so much has been done so well and with so little. And I will have to say more about that. Well, you could be awfully gloomy about this situation, but we weren’t gloomy. We believe there is hope. We believe that there is yet a little time, and that the public health structure in this country and the functions of public health can be reassembled, and we can get our act back ah MILLER REPORTING Co., INC. $07 C Street, NE Washington, DC 20002 (202) 346-6666 25 together, but we've got to start by agreeing about what public health is, what is mission is. We proposed a new definition for the mission of public health. We said public health consists of all those things we as a society do, collectively, to assure the conditions in which people can be healthy. In other words, ‘it talks very much about an overview that looks at the whole population, not just poor people, but does look at poor people and shows compassion for their problems; not just access to health care but does include access to health care. So this definition views public health as more than the absence of disease, more than personal health services, as important as those services are, particular in the problem that you are laboring over so effectively. Public health is more than environmental health; it is more than health education; it is more than safety on the streets; it is more than the abatement of epidemics; it is mare than individual health, more than health promotion or disease prevention; and yet it is all these things. The definition then is both broad and deep, as public health has to be. But a more restricted public health could not meet the needs of the public for adequate health, ah MILLER REPORTING CO., INC. 507 C Street, N E. Washington, DC. 20002 (202) 546-6666 26 could not take advantage of new discoveries in the health sciences, could not cope with new and emerging problems. We suggested that there are three core functions for public health as we put together what I think is a new model for public health delivery and for public health at the local, State and Federal level. We suggested that those three core functions are assessment, policy development and assurance. And a subsequent speaker on today’s program is going to go into those in a great deal of detail and talk to you about how they may apply to the AIDS problem, and that lets me skip a little bit and move on to your questions. I‘d like to conclude my formal remarks, then, by referring to some special characteristics of the AIDS epidemic. Perhaps one of its major features is that it has identified some glaring weaknesses in our society. We think of ourselves as a kind and gentle people, and in many ways we are. However, a truly kind and gentile people will not for long neglect to provide care and support for a substantial mumber of its citizens who are in need. It will not fail to organize itself to solve major health and other problems such as education. It will not fail for long to find the resources needed to reassemble a public health apparatus allowed in the ah MILLER REPORTING CO., INC. $07 C Street. NE Washington, DC 20002 (202) 546-6666 27 1970s and 1980s to fall into disarray. It will not fail to address with real dollars problems like AIDS and to provide the organizational and governmental apparatus needed to deal with those problems--and above all do no harm to the public health structure. I thought Dr. Roper’s comments were absolutely on target there. So often, we think we can create a new structural entity to deal with a new problem. That is not the way to do it. The way to do it, I think, is to build that public health infrastructure and strengthen our agencies. A kind, gentle society will in short deal promptly and effectively with problems other than the savings and loan bailout and the threat to Middle Eastern oil supplies. Voluntarism, although important--and it is very, very important, and I don’t want to be interpreted as arguing that it is not important--but voluntarism is no substitute for adequately-funded governmental action. Those thousand points of light simply leave too much darkness between them. To quote Uwe Reinhart, professor of political jeconomy at Princeton, "the otherwise admirable American ideals of private charity and voluntarism may actually be a two-edged sword. Though they accomplish much good, they may also act as the opiate of the American public, deluding a MILLER REPORTING CO , INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 28 basically decent people into believing that the establishment ‘charitable trusts’ together with ‘charitable giving’ translates into genuine charity. The truth, unfortunately, is that deeply troubling social problems requiring whole dollars for their solution cannot be adequately addressed with just two bits’ worth of trickle-down generosity." And finally, although our attention must focus on AIDS until that scourge is brought under control, we should recognize that AIDS and other public health problems are cumulative in nature. With smallpox and, to a more limited degree, polio standing as exceptions--and I hope a few years down the line we will be able to look at AIDS as an exception- -public health problems, with those exceptions, unlike wars, are not permanently won. Not only must we be prepared to deal with new threats, whether brand new diseases like AIDS or old diseases returning in more dangerous forms, like malaria; we must also deal more effectively with measles, whooping cough, other sexually-transmitted diseases, arthritis, diabetes, heart disease, cancer and stroke. The list could go on and on. We must build a public health apparatus capable of dealing continuously and effectively with all these problems. ah MILLER REPORTING CO., INC. 907 C Sueet, NE Washington, DC 20002 (202) 546-6666 29 It does no service to AIDS or the rest of public health to fund new problems chiefly by reallocation of resources from within existing public health budgets. This only depletes and weakens further the public health apparatus. I think we must develop the will, the leadership and the resources to bring good health to the American people and, having brought it, to keep it. Thank you very much. CHAIRMAN OSBORN: Thank you very much. That was remarkable testimony, and I think the Commissioners will want an opportunity to interact. Before I neglect further to say so, I want to thank Dr. Konigsberg for his wonderful input in helping us to structure some of these presentations and making sure we get good opportunity to talk about these important problems; and also to welcome Dr. Mason who has joined us, the Assistant Secretary for Health. With that, I open the floor for discussion. Eunice? COMMISSIONER DIAZ: I have a question and a comment for Dr. Roper. As head of the agency charged with the major public responsibility of informing the American people about ah MILLER REPORTING CO., INC. 507 C Suet, NE Washington, DC 20002 (202) 346-6666 30 the HIV epidemic, through the national campaign, which is publicly-funded, do you see that we are making much progress? What would you do differently? I know that you are a newcomer in respect to CDC and a lot of the campaign had occurred before you leadership there, but do you really feel we are getting a very precise message out to people, or how would you assess what needs to be done in a nutshell regarding the public information campaign to the American public? DR. ROPER: You have asked what is the leading question of the day, that is, what are we getting for the millions and millions of dollars we have spent nationally and at the State and local level and in the private sector. We have a series of evaluations underway. What we know so far is the public at large has heard about AIDS. They know a fair amount about the disease, but there are a lot of misperceptions, inaccuracies, falsehoods, et cetera. My assessment of how we are doing on the educational front thus far is pretty good, but nowhere nearly good enough. What we are trying to do in the current public information campaign that was just unveiled a couple of months ago is to do two things: one, to broaden the public's ah MILLER REPORTING CO., INC, 507 C Street, NE Washington, DC 20002 (202) 546-6666 31 understanding of not just clinical disease, AIDS, but HIV and the broader spectrum of the problem, but secondly, we are trying to personalize the message so that this is not some vague problem confronting society, but it is an issue that we want every American to think clearly about whether or not he or she might have been exposed to HIV and then to come forward and be tested if they have been, and to assess what further things they might do including changing behaviors and taking advantage of early intervention treatments. It is a message of prevention, but it is also a message of hope and understanding that we are trying to convey. The short answer would be "pretty good", but we can do much better. CHAIRMAN OSBORN: Dave Rogers. COMMISSIONER ROGERS: If I may echo June’s comment, that was eloquent testimony, and we are privileged to have all three of you here. Bill, I guess I would shoot at you first, and I'll use a little of Dr. Remington’s ammunition. You said that obviously one of the concerns of the public health system is it is fighting the last war or the next one. One of the things which has concerned me increasingly is what seems to ah MILLER REPORTING CO., INC. 507 C Soeet. NE Washington, DC 20002 (202) 546-6666 32 me a totally outmoded data system. You are head of the major agency in this country in terms of our intelligence system about what is going on in health and health affairs, and it seems to me it has stayed back in the century before in terms of the kinds of vital statistics we present to our public. Someone said that vital statistics are human tragedies with the tears washed away, and I think that is true, my point being that the kind of data you people put out is, one, too damn late, and two, doesn’t really measure what the health system does. It amazes me that I could pick up the paper and find out the batting averages of everybody from the day before, and I can’t find out how many pregnant women in Birmingham have been seen prenatally, or infant mortality in Nashville, or what-have-you, often for two years; and I can’t find the kind of thing that Dr. Remington was talking about, which is--well, I happen to have this figure in my head--that 18 percent of people with arthritis are crippled. Now, what doctors do, obviously, is to try and bring that down to 10 percent or 4 percent or what-have-you. Why aren’t we putting that kind of data out regularly? It seems to me that would be a very powerful push ah MILLER REPORTING CC., INC. 507 C Street, NE Washington, DC. 20002 (202) 546-6666 33 for funding of public health if we could show what the system did and if we could show how it did prevent disease, and I would know what the immunization levels were, and I would know why 60,000 more blacks are dying or why the mortality rate is going up. Our intelligence system seems to me primitive compared with what our capabilities ought to be. DR. ROPER: Your question is eloquent testimony in itself. I agree with you, information is power, and we ought to be doing a much more timely, wide-ranging job of getting information out. I had something to do with publishing mortality statistics on hospitals and the Medicare program, and wholesale those kinds of things ought to be done across the public health and health care systems. You say we are not doing enough, what are we doing. The information you ask for is available, but it is fragmen- tary, and it takes too long to assemble it; it is not timely. One of the things that we have under way is the development ofa system that my distinguished predecessor pushed, called WONDER, which stands for, if I can remember the acronym, Wide-Ranging On-Line Data System for Epidemiologic Research. It is a computer-based system that has as inputs everything ah MILLER REPORTING CO., INC $07 C Street, NE Washington, DC 20002 (202) 546-6666 34 from census data to surveillance data and allows down to the county level immediate access through a computer terminal to the kind of information you seek. That could go much further if we had the support to do it. Finally, the problem is this is a pretty vague concept to the average American, the need for data to assist decisionmaking. That is why we need to push their understand- ing through giving them some statistics in order to entice them to want more. The last point I’d make is that on Friday, with some leaders from a foundation of which you have some acquaintance who have a new initiative on health statistics-- the Johnson Foundation is going to be helping us. COMMISSIONER ROGERS: Thank you. CHAIRMAN OSBORN: Don Goldman. COMMISSIONER GOLDMAN: Thank you. I have two questions--one for Dr. Roper and one for Dr. Satcher. Dr. Roper, you started off by saying the public health response to AIDS and HIV infection had been good, and I am wondering, are you saying that the response is the best we can, given the limited resources that you have been ah MILLER REPORTING CO., INC. 507 C Suect, N.E Washington, D.C 20002 (202) 346-6666 35 provided and the state of disarray described by the ILM, or is it that in an objective sense the response has been good-- because if it is the latter, I don’t understand how that square with at least what we have seen across the country, where hundreds of thousands of people with HIV infection don’t receive adequate care, are excluded from access to care and thereby inhibit efforts not only at alleviating their suffering, but inhibiting efforts at epidemic control and disease prevention. The second question, which may be part of that, is what do you think is the Federal responsibility to sick people in general and to persons with AIDS and HIV infection in particular when State and local health systems fail to fulfill what you think is their appropriate role? DR. ROPER: How long to I have to answer? As to your first question, I believe the public health response has been a good response within, as your question frames it, the resources available. Primarily what I am trying to say, sir, is it is awfully easy--and I don’t accuse the Commission of doing this--but it is awfully easy to say things are terrible, nobody is doing the right thing, we ought to scrap this whole system and do something entirely ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 36 different. And as a former soldier in the ranks of a local health department, there are people out there who are underappreciated, surely underpaid, overworked, and all those kinds of things, and they don’t need another commission dumping on them. They need help. That is what I am trying to say. As to your question what is the Federal response for people who need health care who can’t afford it--did I get it about right? COMMISSIONER ROGERS: Well, obviously, your concept of the appropriate response is AIDS and HIV infection in particular and health care systems in general; there is an appropriate Federal response, and there is also an appropriate State and local response. My question to you is what do you view as the Federal responsibility when, based upon your own standards, whatever they may be, the State and local response has been inadequate, and as you put it, not necessarily because the soldiers out there are any less caring, but maybe their State legislatures or their county commissioners have not provided them with the necessary resources for them to fulfill what they would agree to be their responsibilities. ah MILLER REPORTING CO,, INC, 507 C Street, NE Washington, DC 20002 (202) 546-6666 37 So my question is in that setting what do you see as the Federal responsibility. DR. ROPER: The Federal responsibility is to assist in providing the health care needs of people in general, particularly the poor and senior citizens and mothers and children; those are uniquely Federal roles. The HIV health care financing need is a very real one, and the Federal Government just passed authorizing legislation, not yet funded, that I hope will be funded to begin to deal with that problem. I am not trying to avoid your question, but a point I find useful is that there is no magic answer to your question as to the Federal role that translates through a computer program into--aha--this is the Federal Government’s share. We have a democracy, a political process that is out at Andrews Air Force Base right now, deciding what the Federal response is going to be, and we make our decisions through a very public process, and let’s have at it. COMMISSIONER GOLDMAN: Thank you. May I ask a question of Dr. Satcher? CHAIRMAN OSBORN: Yes, surely. COMMISSIONER GOLDMAN: Dr. Satcher, do you think ah MILLER REPORTING CO , INC. $07 C Sereet, NE Washington, DC. 20002 (202) 546-6666 38 the black medical and professional community has adequately recognized the magnitude of the problems that AIDS and HIV infection represent in the black community, and if not, what can be done to heighten that recognition? DR. SATCHER: Well, I don’t think any of us has to date adequately responded to the HIV epidemic, and that includes the black health professionals; it also includes health profession education schools. I don’t think we are putting enough emphasis on the whole area of disease preven- tion and health promotion, behavioral modification. I just don’t think right now our system is set up that way, whether you talk about the public health system from the standpoint of the way it can be defined from the Federal perspective or the role of any academic health center in terms of what it prepares its graduates to do, what it motivates them to do, in terms of dealing with a problem like AIDS. So specifically in response to your question, no, I don’t think black health professionals have yet adequately responded. I think based on the recent NMA meeting and some others, that response is taking on momentum. There are some very positive examples, like out in Watts, Wilbur Jordan and their program out there, and yet you can say all of them are ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, D.C. 20002 (202) 346-6666 39 inadequate to date. So we still have a lot to do. CHAIRMAN OSBORN: Diane Ahrens. COMMISSIONER AHRENS: Thank you. I have two questions, one for Dr. Roper and one for Dr. Satcher. Dr. Roper, I guess we all come from where our feet are planted, and mine happen to be planted in county govern- ment. So I was really delighted to hear you say that one of the needs is to mobilize the leadership at the local level to address this issue. I have been involved with the National Association of Counties, and that is our top priority in trying to mobilize that leadership. In connection with some of the things we did in the National Association of Counties, we did a number of site Visits around the country, and we also went to CDC; this was a year ago last May, with a group of elected officials. One of the concerns we had at CDC in talking to the staff there-- and they did a marvelous, full-day program for us--was that we felt a real lack of understanding about the role that counties play in addressing this epidemic. DR. ROPER: Well, you’ve now got a CDC Director who ah MILLER REPORTING CO, INC. 507 C Surect, NE Washington. DC 20002 (202) 546-6666 40 has been to a lot of NACO conventions. COMMISSIONER AHRENS: So my question is in connec- tion with your concern to mobilize local leadership, what is cpc doing to mobilize that leadership--and I am not talking about county health officers; I am talking about the elected leadership at the county level. DR. ROPER: Sure. My comment is not a facetious one. I have been to a number of NACO meetings, the July meetings and other specialized meetings as well. What needs to be done is to acquaint--whether it is county supervisors or whatever you call elected county and municipal officials-- with what public health is, what it is we do, and how the decisionmaking/resource allocation process works. What CDC is now doing, to get to your question, is constructing a series of activities including public informa- tion but also, in partnership with others, educational programs to try better to acquaint local and State officials with what public health is all about and how we can assist folks on the front line. As I said in my comments, I think the most important thing I can do during my years at CDC is strengthen local public health agencies. ah MILLER REPORTING CC., INC $07 C Sereet, N E. Washngton, DC = 20002 (202) 546-6666 41 COMMISSIONER AHRENS: I would appreciate receiving a list of those opportunities. I have not seen them, and I am glad to hear that they are occurring. DR. ROPER: Sure, we'd love to do that. COMMISSIONER AHRENS: And then my second question is to Dr. Satcher. I speak not just from what is occurring in my own county with respect to addressing this issue among the African American community but also in terms of some site visits that we have done in terms of the Commission and have done as part of the National Association of Counties’ effort, in that what I have experienced happening is as we have held |these meetings--and by the way, in my own district, we had the first meeting among or within the Afro American community a year ago last May; since then there have been I guess three or four meetings--but there seems to still be a terrible denial among those in that community who are very concerned about this, which are mostly people in the public health field. There seems to be a deep frustration and a throwing up of the arms and saying "We don’t know how we are going to ideal with this because cur leadership will not confront it." I guess my question is what needs to happen to ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC = 20002 (202) 546-6666 42 spark that leadership in dealing with this issue, because if we look at the numbers coming at us in the Nineties, I think it is very frightening and very concerning. DR. SATCHER: I think perhaps a few things need to happen. Let me just make one comment about the association and what is happening there. In March of 1990, we were funded by NIAID as a Minority AIDS Consortium specifically to try to get these aid institutions to provide leadership in dealing with this problem from the perspective of community education, health professions education, clinical trials, clinical involvement, research, et cetera, because I think it is very clear that the need for that is there. We also have entered into a cooperative agreement with CDC whereby the institutions and the association were putting more emphasis on prevention throughout the curriculum but also developing relationships in communities of the kind I talked about with churches and schools and others to try to foster increased awareness and involvement in dealing with this problem. But let me further add that I think in all fairness, the whole issue of the situation in Afro American communities in this country can be somewhat overwhelming just from the ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 43 standpoint of poverty and access to care. So there are a lot of basic things that we are still dealing with in terms of the inner cities especially that people are struggling with. The physicians who practice there are struggling to survive with Medicaid, which is totally inadequate and which, as has been pointed out, rations by inconvenience in terms of trying to conduct a practice. Some of those people who have come to the front line have had the most problems in terms of dealing with issues of reimbursement. So I think on the one hand we need the leadership you are talking about, but we also need to recognize that there are some inherent problems in this system of health care that are becoming overwhelming to people who would practice in underserved communities. I mean, they are becoming overwhelming in terms of just surviving in those communities and providing care. We must deal with health care reform in this country. We must provide access for people to health care, regardless of ability to pay. Regardless of whatever else we do with the system, we must deal with the problem of access because if not, the people who are trying to provide care in inner cities and rural communities are not going to be able ah MILLER REPORTING CO., INC. $07 C Street, N E. Washington, DC. 20002 (202) 546-6666 44 to hang on much longer, and I think that is what we are seeing happening. | So we have a responsibility, and I think there is — some movement in the right direction, but we must face the generic issue that we face in this country in terms of our health care system. COMMISSIONER AHRENS: Thank you. CHAIRMAN OSBORN: Charlie Konigsberg, then Scott Allen, Harlon Dalton and Larry Kessler. COMMISSIONER KONIGSBERG: My question is for both Dr. Remington and Dr. Roper, and I would in fact like Dr. Roper to respond to Dr. Remington's expounding on this question. I went to get back to the question of public health leadership. Dr. Remington, it was talked about a good deal in the ILM report, the study of public health; there were examples of good leadership and there were examples of perhaps inadequate leadership. If you could elaborate a little bit on what you really mean by leadership, and then Dr. Roper, if you could jpick up from that as to what it means to you particularly in relation to the public health system’s response, thinking ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 45 back on both experiences that we have had as local health officials and as State health officials, what that response ought to be and going beyond the issue of direct medical care. Dr. Remington? DR. REMINGTON: Yes, thank you. I think leadership is a tough issue not only for public health but for our country right now, and this may be a period that historians will point out sometime as a period in which leadership was needed and found wanting in many, many different sectors of our society. We have become very good, I think, as a society in general at governing by poll, by finding out what the people think out there, instead of by trying to articulate points of view that might move the society forward and then in a sense selling those points of view to the people. The people in this country are reasonable people. I think they will accept much more than we have been willing to put on their plates in the past. And that goes right across the board, taxes and all the rest of it, all those "T" words and "D" words like "disarray" and all the rest of it. So public health is not alone in that, but what we need for public health leadership--well, of course, we need ah MILLER REPORTING CO., INC. 507 C Streex, NE Washington, D.C 20002 (202) 546-6666 46 everything. We need a person who is well-prepared, scientifi- cally, who knows the technical and scientific basis for public health; that is absolutely essential, because that is going to be the person to whom the public will need to turn when problems arise in the community. We are going to need someone who can manage an organization. All of that goes without saying. We are going to need somebody that we find too rarely in public heaith these days, someone who can relate to county officials, local officials, to people whose job it is to form public policy in this country. And in a democracy, we do that by negotiation, by compromise and by the rest. And those of us who are trained as scientists often feel that any sort of compromise or discussion about what we know to be correct, because we are the scientists in this business, is a. little bit like selling out. We've got to get over that in public health. To be a scientist or a public health technologist in a sense, working in a democracy, constantly involves give and take and assessment. We need more of that not only in public health but in general. I think on the other hand in this society, an even ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 47 shorter commodity is "followership" and a willingness to delegate, a willingness to follow a little bit--not without question--but to follow the kinds of leads that seem ap- propriate. That’s a tough bill to fill, but I think all over this country we find outstanding examples of public health leadership. We have just got to have more than the isolated examples, that’s all. DR. ROPER: Well said. I’11 just add a word or two. I think what we need to have greater leadership particularly at the local is individuals who are able to bridge the gap between science and politics. I understand my colleague Dr. Satcher’s point earlier that public health decisions ought to be driven by science, and I fully agree with what he said. But I don’t think we ought to try to entertain the idea that the world of science and the world of policy, or politics, if you want to call it that, are separate and ought to remain separate. Frankly, I view my job, whether as a county health official or as a governmental official now, the principal job I have is to bridge those worlds, to enable county elected officials and others to understand waht the science is, to ah MILLER REPORTING CO., INC. 507 C Suect, NE Washington, DC 20002 (202) 546-6666 48 speak up and out, as Dr. Remington has said, and to speak in a way that the public can understand waht the science is and what the needs are in order to develop the support and the resources that we need. I think we need more Roy Rowland, frankly. A continuing frustration of mine is that people believe if you go to law school you can do just about anything in this country--you can run a business, you can be elected to office, you can do whatever else. If you go to medical school, you are supposed to wear a white coat, carry a stethoscope, and you are pretty well unskilled in the ways of the world generally. I happen to think we need more physician or other health care politicians--and politics is not a dirty word. Thank you. COMMISSIONER KONIGSBERG: Thank you. CHAIRMAN OSBORN: Scott, Harlon and Larry, I’1ll ask you to be as succinct as you can, because while I want to take full advantage of our distinguished panel, and yet we do need to move on. Scott? COMMISSIONER SCOTT ALLEN: I have one quick ah MILLER REPORTING CO , INC. 507 C Sereet, NE Washington, DC 20002 (202) 546-6666 49 question for Dr. Remington. You talked about the core functions of public health being assessment, policy development and assurance. Who is responsible for the services delivery for those of our citizens who are indigent? DR. REMINGTON: That is naturally going to vary all over the map. The assurance function said that the public health function is to be certain that services are delivered, and then it listed a series of ways in which that might |happen. Much is done in this society and will continue to be done through the private sector. We may in some instances need new regulations in order to get that job done, and then at some level it will be necessary for yet a number of years for the public health agencies to provide some level of direct services themselves. We are arguing in our report that the public health agencies should be in the business of getting out of that business; that is, they should seek to adopt this assurance role and that last role of the direct provision of services ought to be somebody else’s function. Now, paying for it, obviously, if there isn’t an ability to pay for the delivery of personal health services-- ah MILLER REPORTING CO., INC. $07 C Street, NE. Washington, DC 20002 (202) 546-6666 50 and Dr. Satcher talked about this eloquently--and if $39 Ini llion or whatever your favorite number is people in this country are unable to afford it or are uninsured, and therefore many of them doing without, then we have a big problem. And I don’t like the fact and I’m sure you don’t like the fact that it is only our country and the Union of South Africa that are in that.particular bind at the present time among all developed country. That is not a league that I would like to play in, and it is a league which we have to work our way out of in a big hurry. COMMISSIONER SCOTT ALLEN: My concern there is that the private sector is not coming to the table for the indigent, and that public health is moving away from the indigent in service delivery. And you are saying that your role is to step back at a time where we need some leadership — and some movement forward. I would like all of you to respond to that because I have a real concern that everybody is pointing the finger at somebody else to do it. DR. ROPER: I perked up when you said public health is moving away from the indigent. I have no evidence of that—- ah MILLER REPORTING CO., INC. $07 C Steet, NE. Washington, DC 20002 (202) 546-6666 51 COMMISSIONER SCOTT ALLEN: Well, no, no, in service delivery, the philosophy-- DR. ROPER: I know of no evidence for that. In fact, we are doing more than ever before to deliver health icare services. COMMISSIONER SCOTT ALLEN: I’m just responding to what he said in that they want to move back into more of an assessment role. Maybe I misunderstood. DR. REMINGTON: Yes, you may have, or I probably said it badly. On down the line, we'd like a time in which public health agencies are not devoting so much of their attention to actual service delivery because nobody else is doing it. That is a default role for public health, but it is a very important default role until we get our national priorities sorted out a little bit better and cure this problem of access that we've got for those 40 million folks. DR. SATCHER: I think it is very important for us to recognize the direction in which we are moving relative to this issue, and I think that is fairly clear. I mean, if you look at the National Center for Health Statistics data, in 1976, almost 70 percent of the poor people in this country were eligible for Medicaid; now, it is less than 40 percent, ah MILLER REPORTING CO , INC. 507 C Street, N E. Washington, DC 20002 (202) 346-6666 52 significantly less. So there is no question about the direction we are moving. Now, whose fault it is is a different issue. I think we have a basic need for health care reform, and it is probably going to be a public/private combination, but we need to get moving with it because it is critical. If we don't deal with this issue of access to care, more and more people are being shut out of the system--many of them working, by the way. We ought to make that point. Almost 70 percent of these people who are uninsured are employed, but they are employed in situations where they are not getting health insurance with their jobs. So I just think that the critical need to deal with that problem is so paramount in all of our discussion, until jiwe can't wait any longer. But you can’t point fingers because we have to make some tough decisions. And I don’t think politics is a dirty word. I think sometimes we allow it to overly influence decisions in public health, and that is the point I am making, that we cannot allow it to overly influence critical decisions about how we respond to scientific data in terms of what works and what does not work in public health. ah MILLER REPORTING CO., INC. 507 C Sueet, N.E, Washington, DC 20002 (202) 546-6666 53 CHAIRMAN OSBORN: Charlie had a point of clarifica- tion. COMMISSIONER KONIGSBERG: Yes. I would like to clarify and have Dr. Remington perhaps help me just very quickly. I know time is short. On the intent behind the word "assurance"-~-I’d like to dispel the notion that "as- surance" is putting it on somebody else, or a copout. Asa matter of fact, in my job, I find assurance fare more difficult because of some of the things that Dr. Roper talked about, the negotiation, than just saying, well, give me the money and I’1l do the work. Just very quickly, if you could please give that essence because I don’t want this Commission to be left with the impression that assurance is a bit of a copout, which is what I thought I was hearing. DR. REMINGTON: No; if that is right, again, it is because I misspoke on it. We are talking about the future. We are talking about a dream for a future, an ideal kind of a structure. How far are we from that future? We hope it is not going to be very far, but in fact in reality, probably ten years from now, we are still going to be trying to achieve that particular kind of goal for public health. ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC 20002 (202) 546-6666 54 But what you find now, if you go to public health departments, is that simply because of the access problem that Dr. Satcher has dealt with so eloquently, public health departments are spending--a number of them in this country-- most of their time and most of their budgets delivering personal health services that ought to be attended to in an orderly way by the private sector or by some other kinds of lentities in our societies, whether those are neighborhood lhealth centers or whatever they are. And that is the problem, and that makes it impossible for them since they are just another service provider in that instance, to exercise these sorts of monitoring functions. Now, is it better to let those people do without services than to convert the agency? Well, you give an agency a terrible choice when you provide that kind of a choice; it is a nonstarter, a Hobson’s choice. And we are simply going to have to restructure ourselves to get public health to where it needs to be. But the first thing that has to be done is we have got to solve that access problem in ithis country, I think, or one of the first things. CHAIRMAN OSBORN: Harlon and Larry, I’m going to beg you to be brief. ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, D.C 20002 (202) 546-6666 55 COMMISSIONER DALTON: I have two brief questions, one for Dr. Roper, the other for Dr. Satcher. Dr. Roper, you said you did not want to duck Don Goldman's last question, so I thought I would ask it again in abbreviated form. When State or local health officers are unwilling, or more likely unable, to perform their function as you define it, should the Federal Government step in? DR. ROPER: Sure--but the ultimate end to waht you say is if local or State officials choose not to-- COMMISSIONER DALTON: Or are unable. DR. ROPER: --or are unable to--then everything then ultimately becomes a Washington responsibility, and we just can’t do that. We don’t have the ability in our governmental process to make every decision in Washington, and we surely don’t have all the money in Washington. So it is not a copout or a shoving of responsibility on somebody else’s shoulders when I say this is something we’ve got to do in partnership with State and local officials. But yes, if they don’t act, as soon-to-be Mr. Justice Souter said last week, the Federal Government has a responsibility. COMMISSIONER DALTON: I was also pleased to hear ah MILLER REPORTING CO., INC. $07 C Srreet, NE Washington, DC 20002 (202) 546-6666 56 him say that, I might add. Dr. Satcher, I was quite moved by your response to my fellow Commissioner Diane Ahrens’ question. I was moved by your discussion of the need for rather major reform of our health care system to assure access to all without regard for ability to pay. My question is whether you shared those views jzecently with any former heads of traditionally black colleges who now sit in high places. DR. SATCHER: The answer is yes. Let me, without publicizing it, the first issue of the Journal on Health Care for the Poor and Underserved from the Institute on Health Care for the Poor and Underserved at Meharry came out a month ago, and one of the very important articles in that first issue is the study from the National Center for Health Statistics, and it is the first time it has been published, showing what is happening in terms of the poor. But the answer is yes. Now let me get back to something that Bill said about the State and local officials--I was going to say if they were here today, but many of them are here today-~and what you really see happening in many cases is that they feel ah MILLER REPORTING CO., INC. 507 C Street, N.E Washington, DC. 20002 (202) 546-6666 57 that an increased burden is being put on them by the Federal Government, that we are doing a lot of shifting of respon- sibility right now because of this access problem. So we are shifting a lot of the problems to the State and local governments without shifting the money. So I just want to make sure that we understand that. It is not whether the Federal Government will step in when they get into trouble; it is also that many times their problems are caused by the shifting of the responsibility without shifting the funds. But to answer your question, every opportunity we get, we make the point about access to care. That is, as I said, one of the major missions of the Association of Minority Health Professional Schools, and that has always been a major mission of Meharry Medical College, and certainly David Rogers, as President of the Robert Wood Johnson Foundation, I think showed us in this country the importance of access but also that is was feasible and what impact it could have if done appropriately. CHAIRMAN OSBORN: Just before I give Larry the last guestion, I am told that if everybody speaking into a microphone maintains a four- to six-inch distance from it, ah MILLER REPORTING CO., INC 507 C Street, NE Washington, DC 20002 (202) 546-6666 58 the sound technician will have an easier time standardizing the level. COMMISSIONER KESSLER: Dr. Remington, you in part I think answered my question, so I’m going to make a statement and maybe you can comment on it. It seems to me that at times we are in a remake of the movie "Jaws"; that what we have here is a police chief dealing with the chamber of commerce and the tourist bureau, not wanting to scare away the tourists so we don’t tell people about the sharks in the water. There are some liconcrete examples of that~-and you alluded to the issue of the pollsters who are in many cases running, or at least influencing, public health at times because the candidates or the people who have been elected fail to lead. We are currently in a nationwide campaign for Congress, and there are many governors’ seats open, and so on, and I would be willing to bet if we did a study, you would find that most of the candidates haven't even uttered the word "AIDS" in their campaigns, or if they did, they put it in a litany, saying, "This is a problem," but not offered any solutions or any suggestions about what they would do if they get elected in terms of the public health response. MILLEA REPORTING CO,, INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 59 How do we get over this hump? How do we get out of this sort of "Jaws" scenario where public health has been assumed under the guise of a public relations problem, where public health officers and those appointed our hired to do the job of protecting the public health have to answer in so many cases to the governor, to the President, to a mayor, and So on? It seems to me that you have looked at this issue in your report, but I wonder if you have any additional thoughts there in terms of this leadership issue.. DR. REMINGTON: Well, not a great deal. And some of the folks who are going to talk to you later today and tomorrow are going to be talking about this at great length. I think your formulation of the problem is right on target. But I want to say--because I have been the gloomy one here today a great deal--that I really find this a hopeful time. I can’t recall a period during my years in public health at which there has been a confluence of so many events--reports; the Health People Conference two weeks ago and the document that is going to follow that; and the testimony that you are taking here as a very important and highly observed, watched national commission. A lot of ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 60 things are coming into focus on this. I never would have believed, for example, that that little "Future of Public Health" report could possibly have become a best seller-- pen. it is in its fifth printing at the National Academy’s press right now. That is almost unprecedented. You have a hard time getting hold of a copy. I think that is good news. Some people in this country, many people, many policymakers, are really interested in public health, and I think interested in it for the right kinds of reasons; interested in helping it develop; interested in getting this country out of the bind it is in on questions of access and the deteriorating environment and adverse effects on health, and above all, AIDS--and malaria standing in the wings to come back in a difficult and tough-to-deal- with form; and measles. You know, you could take the list as you want to pave it, but I think we’ve got an opportunity now and a confluence of opinion that I find very encouraging, and if we in public health and as public health professionals and you. folks can keep the pressure on and keep pushing, I think we are going to make some progress here. COMMISSIONER KESSLER: Thank you. ah MILLER REPORTING CO, INC, 507 C Street, NE Washington, D.C 20002 (202) 546-6666 61 CHAIRMAN OSBORN: Well, let me thank you. I think that is an excellent place at which to end this set of broader discussions and turn to the public health response. So thanks to all three of you for wonderful testimony. COMMISSIONER ROGERS: I would just reassure Dr. Remington that we all have copies of that highly-scarce report. CHAIRMAN OSBORN: Our next panel will be addressing the public health response. It includes Dr. Suzanne Dandoy from Utah; Dr. Mark Magenheim from Sarasota, and Mr. William Myers from Columbus, representing several aspects of the public health response. I wasn’t very clear before about our little, low- tech system up here. We have a kitchen timer to try and help us keep track of things so that we have opportunity to interact with you. So if you hear this thing "ding" it means there is about another minute, and then we would enjoy moving on so that we can have discussion. As you have already observed, the Commissioners are very lively about discussion. Welcome, Suzanne. Please go ahead. DR. DANDOY: Thank you, Dr. Osborn, Commission ah MILLER REPORTING CO., INC. 507 C Street, N E. Washington, DC 20002 (202) 546-6666 62 members and colleagues. I appreciate the opportunity to testify before the Commission today on behalf of the Association of State and Territorial Health Officials and the American College of Preventive Medicine. The College is the medical specialty society for physicians practicing in the fields of preventive medicine and public health, and the Association represents the chief health officers in all the States and U.S. Territories. You have one current and one former member of that Association sitting with you, Dr. Mason having been a State health officers, and you will hear from three present or former State health officers tomorrow. I will address the public health role of States in responding to the challenges presented by the AIDS crisis and will go briefly through the comments that have been prepared for you; a longer version is written, and you can read it as your leisure. . Much has changed about the role of the States since the previous Commission’s 1988 report. The response of public health has broadened to accommodate the changing face of the epidemic. No longer is the role solely one of ah MILLER REPORTING CO., INC. 507 C Street, N.E Washington, DC 20002 (202) 346-6666 63 prevention. While surveillance systems, counseling, testing and partner notification remain the foundation of the public health effort, primary care and treatment are emerging as critical components of the public health response to the epidemic. Health department programs vary from State to State, depending upon population density, infection rates, resources and existing laws. Regardless of this variability, the primary goals of any State health agency response to HIV remain the same: 1) defining the size and nature of the problem; 2) reducing HIV transmission; 3) educating high-risk groups and the general public, and 4) providing care for persons with HIV and AIDS. A successful response to the epidemic requires leadership from each State health agency. First, surveillance systems, which define the incidence and prevalence rates of HIV, are critical to the control and prevention of the disease. In addition to recording reported cases of AIDS and results of HIV testing, many States have participated in seroprevalence studies of newborns, prisoners, the homeless and patients in various clinics. These studies contribute significantly to our ah MILLER REPORTING CO., INC. 507 C Street, N.E Washington, DC 20002 (202) 546-6666 64 knowledge of the extent and trends of HIV infection throughout the country. The information obtained through surveillance is used to assess the impact the disease is having on the country, plot future preventive efforts and assess the effectiveness of current efforts. Surveillance data are the evidence for the public health assertions that AIDS is increasingly become a noncoastal, rural epidemic. It is precisely this type of knowledge that is vital to development of overall prevention strategies. States are the keepers of the tools that will be used to chart our progress in reaching the recently issued national health objectives for the year 2000 as they relate to AIDS and HIV. Second, reducing transmission. A fundamental mechanism for reducing transmission of HIV infection and jminimizing morbidity and mortality is the public health system of counseling, testing and partner notification. Any concerned individual should have access to testing through State and local health agencies, hospital outpatient facili- ties and other HIV testing sites. Testing should be volun- tary, nondiscriminatory and accompanied by informed consent ah MILLER REPORTING CO, INC. 507 C Street, NE Washington, D.C. 20002 (202) 546-6666 65 and pre- and post-test counseling. Confidentiality safeguards must be in place. While 2 million people have volunteered to be tested in the country, there are uncounted high-risk persons who remain untested due to fear over whether test results will be kept confidential. Pre- and post-test counseling must accompany all testing to ensure that individuals are informed of the procedure, the implications of both positive and negative results to themselves as well as their sexual partners, available intervention such as AZT, opportunities to par- ticipate in clinical trials and risk reduction techniques. Counseling must include all these factors and therefore takes a considerable amount of time. Post-test counseling may include referrals for CD4 testing and treatment. We have used the term "partner notification” for the identification of exposed contacts. This process of partner notification is not new. Health departments have been relying on this method of disease control for decades and have employed it with great success in combatting many sexually transmitted diseases. Either the infected person or the health department will notify persons ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, D.C 20002 (202) 546-6666 66 who have been exposed to HIV. The primary purpose of partner notification is to stop the spread of infection by providing individual risk \reduction education to those who are positive or those who are at risk of becoming infected. Divulging the name of partners, either sex partners or I.V. needle-sharing partners, is always voluntary. This process enables those partners to obtain counseling about safe behaviors and to obtain access to testing and available intervention. With the advent of early intervention such as A2T, the significance and cost-effectiveness of early partner notification are even more obvious. Guaranteed confiden- itiality of all testing results, interview data and partner notification information is of paramount importance. It is the role of the State health agency to ensure that statutory and procedural safeguards are in place to preclude the inappropriate release of information, particularly that with any personal identifiers. Educational initiatives are designed for the general public or specifically targeted to distinct popula- tions such as high-risk groups or schoolchildren. The fact that we can slow the progress of this disease with the use of ah MILLER REPORTING CO., INC. $07 C Sereet, NE Washington, DC 20002 (202) 546-6666 67 the available interventions increases the importance of HIV education and prevention efforts. Educational programs range from training peer educators to provide outreach to dis- enfranchised youth in the Chicago area; to Connecticut’s ARROWS program, a joint program between the health department and the Drug Abuse Commission which provides for outreach workers to enter shooting galleries and other informal gathering spots of I.V. drug users to distribute bottles of bleach and free condoms. Several States have even begun placement of PSAs in movie theaters throughout their States. The fourth goal, providing care for HIV-infected individuals, is becoming a major public health initiative in many States. This new focus in public health also reflects the continuing reluctance of some private health care providers to treat AIDS patients either because of inadequate expertise or fear. The result is that public health is acquiring a new role, one of being the provider of last resort for HIV-infected individuals. This is particularly true in middle America, that part of the United States not on either coast, where only the big cities have providers willing to care for persons who are HIV-positive. Missouri became the first State in the Nation to ah MILLER REPOATING Co., INC. $07 € Sueet, N.E Washington, DC 20002 (202) 546-6666 68 idevelop and implement a statewide system of case management for persons with HIV infection. This HIV care coordination program provides assistance in locating and coordinating medical and social service for each HIV care. Care coordina- tion is provided by regional interdisciplinary teams of community health nurses and clinical social workers. Because Of this joint initiative, private-duty nursing, attendant care, transportation and supplies are now available to Medicaid recipients with AIDS in home settings where possible. In Alabama, the Department of Public Health has contracted with community-based organizations to provide ongoing psychological and social support to HIV-infected individuals. In many other health departments, there are outpatient clinics that have been established to provide routine CD4 positive cell counts, diagnostic testing, primary care services, and AZT in addition to the traditional counseling and testing services. A significant portion of the care and treatment efforts supported by the health departments actually occur through community-based organizations or local health ah MILLER REPORTING CO., INC. $07 C Sureet, NE Washington, DC 20002 (202) 546-6666 69 departments. Finally, I need to tell you what this HIV impact has had on public health. Public health plays a critical leadership role. The new Federal legislation, the Ryan White, or CARE Act, magnifies the important of the public health role in organizing networks of individuals and institutions to address HIV at the State level. This impact has broadened the role of public health systems and is of profound impact. Syphilis rates are increasing dramatically due in large part to the diversion of STD field staff away from traditional partner notification activities for syphilis into testing, counseling and partner notification for HIV. Fewer patients can be seen in maternity and family planning clinics because staff time is spent with antibody testing and pre- and post-testing counseling to the patients. Public health agencies have insufficient funding and staff to meet these additional demands. It is critical we assure that people have access to these intervention services, but other public health problems cannot be ignored. Education must continue. Syphilis transmission cannot be ignored. Increase in tuberculosis amongst HIV patients must be addressed. All require efforts from public health ah T2S1 MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC 20002 (202) $46-6666 70 agencies. And yet with all of this, we find that recent legislation, the HOPE legislation, the Health Omnibus Program Extension Act, enacts a formula that takes funds from the lower-incidence states in order to benefit the high-incidence areas. This transfer of funds could further cripple efforts in three-fourths of the States to prevent and treat AIDS. Unless there is some change in this, or some hold- harmless provision, we will see a drastic reduction in educational efforts in 38 States. In summary, while the role of public health in addressing the HIV epidemic has been largely one of preventing and controlling the further spread of infection, it is increasingly also one of coordinating and integrating systems of care and treatment, and one of being the health provider of last resort. As the epidemic progresses, public health will increasingly be relied upon to administer a continuum of care. I hope I have conveyed to you a strong message of the comprehensive response to HIV emerging in today’s state health departments as well as the urgent needs for additional resources in order for public health to continue to serve as ah MILLER REPORTING CO, INC, $07 C Sureet, N.E Washington, D.C. 20002 (202) 546-6666 71 a key leader in this epidemic. Thank you. CHAIRMAN OSBORN: Thanks very much, Dr. Dandoy. Dr. Magenheim. DR. MAGENHEIM: Thank you. On behalf of the National Association of County Health Officials, I wish to express our appreciation for this opportunity to talk with you, and particularly to express our concerns about the impact of the AIDS epidemic on public health at the local level. The National Association of County Health Officials, NACHO, consists of physician and non-physician administrators who direct over 3,200 county health departments all across this country. We also are very much involved in this epidemic, and I am here to represent the thousands of health department, literally, who do HIV counseling and testing and the thousands who provide direct patient care to people with HIV disease and AIDS. We also, of course-- COMMISSIONER ROGERS: Excuse me, Dr. Magenheim. A suggestion, if you can do it. We are faithful readers: we have your printed testimony. The more you can speak from the MILLER REPORTING CO., INC. 507 C Street, NE. Washington, DC. 20002 (202) 546-6666 72 heart, and give us time to shoot questions at you, I think the more powerful the impact. DR. MAGENHEIM: Certainly. Our main concern has to do with the fact that we are very well-versed about this epidemic, and we literally are dealing with problems of AIDS and access to care on a daily basis. We wish to emphasize what you have heard from Dr. [Remington this morning about the critical functions--and I have my copy, and I will not sell it--the future of public health on the three critical areas. We are dealing with assessments, we are dealing with policy development, and we are certainly confronting the challenges of assurance ina way that is unprecedented before. Let me just highlight, then, some of the concerns from the public health local perspective about these three areas. We, as you have heard, have done millions of antibody tests literally in this country since 1985. In Florida, we started 8,000 tests the first year, 130,000 last year; we have now done almost half a million antibody tests. In Florida it is required to include pre-test counseling and post-test counseling. This is very labor-intensive, but we feel it is really the only way to do it, and of course, it is ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 73 very costly to do it right. We are also involved in many other activities in terms of policy development and surveillance and case finding and partner notification. The surveillance part of the assessment function is another one that we feel needs to be expanded at the local level. As you see in the testimony, we have reported recently for the second year the results of anonymous heel-stick testing of all newborns in the State of Florida. We have seen now for the second year a steady rate of infection of not quite one-half of one percent, but we are beginning to get the details of the picture that is now emerging. It is ten times higher among black newborns than among whites, and it is three times higher among those living in Dade, Palm Beach and Broward counties. Without surveil- lance, we don’t get the details we need to marshal the resources to effectively know what is happening and to be able to respond and plan the resources accordingly. Let me suffice at this point to say that local health departments are fully committed to an expanded surveillance role and to assess what is going on, but we need the resources, and we need the motivation and the commitment of local governments and State governments and the financial ah MILLER REPORTING CO., INC. 507 C Sereec, NE Washington. D.C. 20002 (202) 546-6666 74 resources to support that effort. For policy development, health departments have been very much involved at the local level, and we have provided a manila envelope for you, a packet, showing what has been done in one county in Sarasota, Florida, where we have a model HIV school policy that has been endorsed by the State of Florida and nationally. We have also developed policies for the work site for employers in the public and private sector, for hospitals, for infection control of staff, which we are now very much concerned about, as well as for patients, and for police departments and public, fire, land safety. Over 2,000 county health departments are involved in these activities, and we are also involved in policies for education to reduce the fear, dispel myths, and help people know so they can make choices to avoid infection. Unfortunately, it is the area of assurance where we are facing major challenges, and for us present real and special problems. We are now dealing with unprecedented pressures at the local level not just to respond to this crisis, but really to deal with the burgeoning perception that the local ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 75 health department and our perception is somewhat different than you have heard at the State level. We do not see ourselves and do not experience ourselves as the provider of last resort anymore. We are now the provider of first choice. We are the ones that everyone looks to to take care of everybody’s problem, that no one else wishes to deal with. And certainly, HIV has compounded this situation. I would refer you this week to the Journal of the American Medical Association, the article about "The Medicaid- ization of AIDS"; this says it in spades for what we are experiencing in the State of Florida. Literally, the local public health agency is having to deal with not just this problem, but also the problems of lack of prenatal care for poor women and uninsured women who are working; the lack of trauma care; the lack of home health services; the early discharge of patients who are too sick to really go home, but have to go home, and all of those other problems such as the sexually-transmitted disease rate, teenage pregnancy, drug abuse, violence, increasing rates of tuberculosis. We are literally expected to respond to all of those problems while we also provide care to patients with ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC. 20002 (202) 546-6666 76 AIDS. We think this is unfair and immoral to ask local health departments to deny medical care to one person with AIDS so that we can give 50 immunizations. It is also unfair, we think, vice versa, to ask us to try to find community education dollars, which means denying care to that person who has nowhere else in the community to be served. We simply cannot do this job without the resources, and the resources are not there. There are many problems that we may be able to get into in the discussion section if you would like, but we are primarily concerned that the assurance role has been abdicated by the community as a whole and is expecting the local public health agency to do it alone. And we are tired of the assurance being, "Keep on keeping on." The "Just say no" message doesn’t work for drugs, and telling us just to "Carry on; you are doing a good job" is not going to cut it for this epidemic, either. We are simply too overworked and understaffed and underequipped to respond to this epidemic in the face of all the other ones that we are trying to do. We do feel that there is a need for more dollars for the assessment role. We think that reporting is important ah MILLER REPORTING CO., INC, $07 C Street, N.E. Washington, DC 20002 (202) 346-6666 77 of those who are infected with the HIV virus, and we recommend reporting by name to the local public health department only. We can comment further on why we think that would work; we know that it does. We have a track record that has proven that it does with syphilis and gonorrhea and other sexually- transmitted diseases. We need to know names so we can contact that infected person because their own physician will mot; the hospital, the lab will not. But we need to be able to ask them to give us names of other partners that we can motify to offer them counseling and testing without, of course, identifying the indexed patient. I would like to just close by summarizing that we are beginning to feel beleaguered in our response, and we are at the breaking point. Sarasota County has a population of one-quarter million. You will see the statistics. We are jserving almost 800 patients with HIV. We are delivering one- third of all the babies in the county. We have 1,000 women in our prenatal clinic at the present time. And we are unfortunately not funded adequately to do this job. Our $10 million now includes $7 million for direct patient care. That means the other traditional parts of the public health picture are being taken away from in order to provide the ah MILLER REPORTING CO., INC. 507 C Sueet, N.E Washington, DC. 20002 (202) 546-6666 78 expensive medications and $194 for CD4 tests and all the rest. I’d like to close by referring to Camus in The Plague, because that is really what it is all about. "In this respect our townsfolk were like everybody else--wrapped up in themselves. In other words, they were humanists. The disbelieved in pestilences. A pestilence isn’t the thing made to man’s measure. Therefore we tell ourselves that pestilence is a mere bogey of the mind, a bad dream that will pass away. But it does not always pass away, and from one bad dream to another, it is men who pass away." We are now facing bad dreams, and we appreciate and welcome your support so that we can reduce the number of men and women and children who will pass away. Thank you. CHAIRMAN OSBORN: Thank you very much. That is a hard act to follow, Mr. Myers, but please do. MR. MYERS: Good morning, Dr. Osborn and distin- guished members of the Commission. My name is Bill Myers, Health Commissioner for the City of Columbus, today also representing the United States Conference of Local Health Officers. ah MILLER REPORTING CO , INC. 507 C Suweer, NE Washington, DC 20002 (202) 546-6666 79 Hearing Dr. Rogers’ admonition just a moment ago, I'll try to summarize my comments to you because I know you have read the more lengthy written report that we submitted. What I'd like to do is try to bring to you the perspective of the local health officer and the local health department as we have responded to the HIV epidemic. It is not an easy task because the response has been very diverse locally. It has been diverse due to different resources, due to different attitudes in the communities, and certainly due to different traditions in the communities and different Support among the political leadership of the local com- munities. I would like to use Columbus in a moment as an example, and I would suggest perhaps more the norm in the country as opposed to some of the very large metropolitan areas that have been inundated by this epidemic. I'd like to suggest a few challenges that remain for the local public health system to date and certainly, conclude with some of the recommendations. I think even though our response has been diverse, it is founded in two prime contexts. First, the legal context. That places the legal mandate, which places the ah MILLER REPORTING CO., INC. $07 C Sweet, NE Washington, DC. 20002 (202) 346-6666 80 authority for disease control, particularly with communicable diseases, squarely on the shoulders of the local public health system. Secondly, I would suggest there is an emerging ethical and professional mandate for the local public health system and particularly its leadership to provide leadership at the community level. I think all across the country we try to incorporate the ideas of the ILM report of assessment policy, development and assurance into action in our com- munities, and I will describe those in a moment. As you know, many States, like Ohio, are now requiring the reporting of positive HIV results to the local health departments to complement the AIDS case reporting systems and data from anonymous counseling and testing sites that have been used universally since the early days of this epidemic. If we look at the local health officers’ role, I think you can see it in terms of several aspects--first of all, informing elected and other community leaders about the status of HIV in their community and the need for programs. I think you can see examples of where they have used the authority of their office to convene diverse community ah MILLER REPORTING CO., INC. 507 C Sueet, N.E. Washington, DC 20002 (202) 546-6666 resources, to develop local policy, and to collaborate with other health and human services programs in the community to fight back. We have attempted to fulfill our assurance role by mot only providing direct HIV-related services but really, as was mentioned before, by coercing, pleading, arguing and fostering the type of response at the local community that is absolutely necessary if we are going to resolve this issue. I would like to take just a few minutes to highlight some of the experiences in Columbus as one example only of local public health’s response. Columbus is the 19th-largest city in the country. We are the largest city in our county, and we are one of five health departments in the county, but we are the only health department that actually has an AIDS program. The county population is about 950,000. We are defined by the Federal Government as a second tier city. We have had 417 cases of AIDS reported as of September 2nd; half of these individuals have died. Our incidence rate of 11.9 cases per 100,000 population is the highest of any metropolitan county in Ohio. In Franklin County, 84 percent of our cases have ah MILLER REPORTING CO., INC, $07 C Street. NE Washington, D.C 20002 (202) 546-6666 82 been diagnosed in gay and bisexual men; only 4 percent have been attributed to I.V. drug use. The ratio of distribution of our AIDS cases proportionately reflects the racial distribution of the population in our county. We estimate we have an additional 3,000 persons in our county who are infected with HIV. Like many local health departments, we have offered anonymous counseling and testing. We have augmented this recently by adding confidential testing and a greater emphasis on partner notification, a process we began about two and one-half years ago in Columbus. We have tested over 25,000 individuals; about 4 percent of those individuals have been positive. Since we have integrated more emphasis on HIV counseling and testing into our regular STD clinic operation, we have found that over 60 percent of the patients who come in for another STD have consented to be tested for HIV. We operate a successful teen counseling program, funded by our local children’s services agencies, and we also operate an evening counseling and testing site, with our staff and volunteers from Columbus AIDS Task Force to augment that effort. ah MILLER REPORTING CO., INC, $07 C Sueet. NE Washington, DC 20002 (202) 546-6666 83 As early intervention strategies--and I think that is one of the things we need to really hone in on today--we have initiated several outreach activities into our neighbor- hoods where people at increased risk for HIV live and congregate. We have a good working relationship with our county jail, the gay bars in our community, the one gay bathhouse, homeless shelters, the metropolitan housing authority, and our local methadone clinic. Our outreach workers have been selected because of their past experiences and are well-known on the street. That I think is a reason for the success of some of our putreach programs. Just in the last six months we have distributed over 60,000 condoms in our community. Through these various outreach efforts, we have provided over 220 HIV tests to these high-risk individuals as a result of our street putreach program. We are also involved with NIDA and Wright State University and Dayton/Montgomery County in Ohio to follow over 680 I.V. drug users in our community, and one of the things we have been very pleased about is that over two years of enrolling this number, we have been able to follow 75 ah MILLER REPORTING CO, INC. 507 C Sueec, N.E. Washington, D.C 20002 (202) 346-6666 84 percent of them. I think that is going to give us and hopefully the country some data that we can rely on in the future. The other thing I’d like to mention locally is that policy and planning guidance for us has been provided through what we call the AIDS Community Advisory Coalition. This is a multidisciplinary/multicultural leadership body coordinated- -I think that is important--coordinated by the health department. Under the auspices of the coalition, a comprehen- sive three-year plan with countywide goals was developed. Obviously, our ultimate goal is prevention. That is what we should be all about at the local level. We have targeted in our plan general communitywide education, but we have also targeted youth, gay and bisexual men, i.v. drug users, African Americans, women at risk and their children; we have targeted workplace education, which we have begun in our community; we have targeted prostitutes and correction facilities. In addressing youth education, we have made use of traditional and nontraditional methods. For example, in 1988, our department convened a committee of educators from 17 school districts in our county to develop a comprehensive K- ah MILLER REPORTING CO , INC. $07 C Street, NE Washington, DC = 20002 (202) 546-6666 85 12 AIDS curriculum. The curriculum has received national recognition, and it has been implemented in 13 of those 17 school districts in our county. We also did a special community outreach project last summer, where we reached over 3,000 young people in recreation centers, playgrounds, camps and institutions. This year, a city-funded television, radio, newspaper and billboard media campaign was developed and launched specifically for our community. We were targeting youth aged 13-18, focused on peer pressure. And what we ‘found out is that youth know a lot about AIDS and how HIV is transmitted. What we also found out is that they don’t think it affects them. They feel totally above vulnerability to this infection. And therefore out prevention campaign, education campaign, was focused on trying to break down that feeling of invincibility among our young people. We have also focused, interestingly enough, on adult bookstores. We have surveyed them, and at least to date, until the county sheriff started raiding them, we were in all the adult bookstores, providing education to not only the staff of the adult bookstores, but also to clients. We have had direct home care and hospice programs. ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC 20002 (202) 546-6666 86 We have seen 51 persons with AIDS in our home care program, and we have enrolled another 34 persons with AIDS in our hospice program. Certainly, we also have PWAs throughout our other clinic programs and neighborhood health centers, our Inaternal and child health clinics, our WIC program, for example. Let me just spend a couple moments on challenges. The need for early intervention services and adequate financing is critical today. We know now, since early use of AZT and other drugs have proven their effectiveness in delaying the onset of AIDS, early intervention through Ipartner notification, increased outreach and testing takes on new meaning for us as very effective tools at the local level to combat this epidemic. There are other challenges, though. We know there are continuing gaps in leadership. Local officials have been left at times responding to a national problem without consistent and strong Federal leadership. We know there is an unwillingness at the community, State and national level to deal in a straightforward manner with issues of sexuality. We also need to improve linkages with community- ah MILLER REPORTING CO., INC. 507 C Sereet, NE Washington, DC 20002 (202) 546-6666 87 based organizations. And there are some other challenges which time will not permit me to go into today. What can we do, then? With 143,000 cases nationally, it clearly remains a public health issue, a priority, and certainly we would recommend to this commission that you take a very strong position on the implementation of the Ryan White CARE Act. It is not enough that it has been passed; we need it to be funded at this point in time. We need to step up our prevention efforts. We need to focus on racial and ethnic minorities. We need to continue to focus on gay and bisexual men. It was alluded to earlier this morning the recent indication from some studies would suggest that gay and bisexual men are again reverting to risky behavior, and I think we need to continue to address that. The epidemic is certainly not over by any stretch of the imagination. We need to focus on drug users, and we need to focus on youth. Let me just comment on the youth for a moment. We have had a longstanding problem in this country providing frank and straightforward information to our children about human sexuality and the consequences of sexual ah MILLER REPORTING CO., INC. $07 C Screet, NE Washington, DC 20002 (202) 346-6666 88 es activity. We see increasing rates of syphilis and gonorrhea- -in our community, syphilis has gone up by 400 percent in the last year. These rates provide ample evidence of the failure to educate young people about sex, about other STDs and clearly about HIV infection. Only 10 percent of our Nation’s schools undertake comprehensive sex education. And with the continued slowness of the public schools in incorporating HIV education into existing inadequate sex and health education curricula, young people will continue to be at risk. Next, I think we must recognize that local govern- ments, particularly local health departments, are critical factors in the development of coordinated education and care systems for HIV. The recently enacted Ryan White CARE Act recognizes this role under Title I, which authorizes funds directly to the 16 cities with the highest number of AIDS cases. It is important for other sections of the act, such as Titles II and III, to be implemented with local coordina- tion of resources in the development of community education and care systems. It is important that we not only give support to the large cities, but that we also give support to the medium cities like Columbus, through States, so that we ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 346-6666 89 bh can deal with this problem locally. Let me conclude by saying I think there are a couple of other things we need. Certainly we need good evaluation models of service programming and education programming. It doesn’t make a whole lot of sense to me to continue to see money coming down for demonstration and for model projects. We need to find what works, and we need then to fund those activities in communities. Lastly, let me say this on behalf of the local health departments and local governments. As the Federal Government and State Governments increase their role in the control of HIV infection, there seems to be a lack of respect by Federal and State officials for the authority, expertise and knowledge that has been placed in many local health departments throughout this country. Many metropolitan departments have extensive and well-researched community plans, with established priorities which, at least in many cases, have not been considered during the resource allocation process. Collaboration and cooperation between governmental entities at all levels must be strengthened. I want to thank the Commission for the opportunity ah MILLER REPORTING CO., INC $07 C Sueet, NE Washington, D.C. 20002 (202) $46-6666 90 ~ to present testimony today, and I would be happy to answer any questions. CHAIRMAN OSBORN: Thank you very much. Larry, then Don. COMMISSIONER KESSLER: I have two questions. First, Dr. Myers, I am thrilled to hear your vision, and it sounds pretty comprehensive, in terms of what you are doing in Columbus. What I am wondering about is what kind of resistance or support have you received from a) the public, b) the mayor, c) the county commissioners and d) the governor, in terms of this comprehensive approach that you seem to have and are proud of? DR. MYERS: I appreciate the comment on the comprehensive approach, and I would say yes, we have done a lot, but we clearly have not done enough yet in our community. I think one thing that has been successful with us is that we did not use the AIDS epidemic as our first entrance into the political process in our community. I think that is probably critical. We have a history in our community of coalition-building around a variety of other issues, and we have used the AIDS epidemic to take that even further in our community. ah MILLER REPORTING CO., INC $07 C Street. NE Washington, DC 20002 (202) 346-6666 91 We work very hard. I think we cannot underestimate individuals in communities--and not just myself, but members of my staff, who pounded on doors, who went out and sat down with our mayor--for hours--and not only informed the mayor but the cabinet, informed the leadership of our Columbus city council and particularly the health committee leadership of our Columbus city council about what this epidemic was doing in Columbus, Ohio. I think the other thing that communities need to really coalesce around is this issue. What we could not do as governmental leaders, we turned over to our coalition and said "Go get them." And they did--they were very vocal in terms of looking for resources. Four years ago, we actually had more local dollars, Columbus City dollars, in our local AIDS program than the State of Ohio had appropriated from State dollars for the statewide AIDS program. Now, we're not proud of that. I think that is an indictment as well on State dollars in this Situation. But I think persistence is the key, and I think the coalition-building that needs to occur yet between local communities is the key. COMMISSIONER KESSLER: Thank you. ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 92 My second question is for Dr. Magenheim. I appreciated your impassioned plea for more. What I found jabsent--and I’m not sure if this was intentional or an oversight--what is the relationship of our county health department with the Sarasota AIDS Project? My understanding is that they are not funded by the county, and that may be a misconception on my part--and if not, why not? DR. MAGENHEIM: The initiative for what you are referring to--and you have examples in the packet of the Sarasota AIDS support organization--was a 501(c)(3) grant put together by the health department to fund and get the tax- exempt status. We support that organization in terms of monthly newsletter, annual fundraisers, monthly education programs, and it is funded entirely by funds channelled or directed, granted, by the Sarasota County Health Department. That is unusual in Florida. Most local community- based organizations do not have that kind of relationship with their local government entities. We in Florida are somewhat fortunate in that the State now provides direct funding to the county health departments, which are the local branches of the State Department of Health and Rehab Services. ah MILLER REPORTING CO., INC. 507 C Street, N E Washington, DC 20002 (202) 546-6666 93 We are all State employees acting at the local level. We now have dollars available in Sarasota County-- for example, this year we have $20,000 available--to allocate to community-based organizations. And that is true for many counties around Florida, but that has only happened in the last year, but we have been doing it since 1985 in our local community. That has allowed us to really expand the services beyond the resources of the health department. We now have 150 volunteers working with the local support organization; we provide staff, they provide many of the one-on-one services to take people to their medical appointments, to the food bank which we now have in place, legal aid, referrals for housing discrimination problems. We have contacts to help deal with those. Unfortunately, they continue to occur. But it is by no means commonplace--and in my testimony, as you see, 1,600 health departments around the country have not even been able to begin to address the HIV epidemic. Although 1,600 of them are, that is only half of the county health departments. The other half don’t have resources to deal with AIDS. We are a little bit fortunate in the way we have ah MILLER REPORTING CO , INC. 50° C Streer, NE Washington D.C 20002 (202) 546-6666 94 developed relationships in the community to do some things that are not possible in any other places yet. COMMISSIONER ROGERS: Thank you. CHAIRMAN OSBORN: To give everyone a proper sense of timing, Don Goldman, Diane Ahrens, Harlon Dalton, Eunice Diaz, Jim Allen and Jim Mason would like to have a chance to react. Don Goldman. COMMISSIONER GOLDMAN: Thank you. I’d like to share with Larry the vision that Mr. Myers has proposed-- , COMMISSIONER JIM ALLEN: Don, could you share it al little louder, please? COMMISSIONER GOLDMAN: Sure. I want to share with Larry the pleasure with which I hear what is at least hoped for in Columbus and the kind of vision that it represents. I have a question, however, for Dr. Magenheim. You talked about the importance of the role--and I guess this is for Mr. Myers, also--in looking at the recent study that the National Association of County Health Officials put together on the national profile of local health departments, I note that two-thirds of local health departments cover populations ah MILLER REPORTING CO , INC. 507 C Street, NE Washington, DC. 20002 (202) 546-6666 95 under 50,000. Of those, less than 25 percent even have a part-time social worker; less than one-third even have a part-time health educator. When we have gone around to rural areas involving small health departments, we have been told that the local health department officials have often recommended that HIV testing be done in adjacent communities or adjacent counties because, given the small nature of small town local health departments, they can’t even assure confidentiality in that kind of setting. Yet on the other hand you recommend aggressive action on the part of local health departments and even reporting of HIV status to local health departments when clearly at least two-thirds of the health departments, it seems to me, don’t have the staffing or programs to deal with the information if less than one-quarter have a social worker even on a part-time basis and less than one-third have a health educator. I was wondering if either of you would like to comment on that. DR. MAGENHEIM: 1/11 try to take a stab at it. I think the fact that one-quarter of them do is more encouraging MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 (202) 346-6666 than I would have guessed, frankly. COMMISSIONER GOLDMAN: That only covers those 25- 49. It doesn’t even cover the majority of them-- DR. MAGENHEIM: But you are quite right, that still is two-thirds of the health departments in this country. To have health educators is one that is being eroded these days. The first thing that goes are those support services, the social workers and the health educators, to try to keep a shop nurse in the room in the basement of the courthouse, because that is what public health expects. But unfortunate- ly, to deal with these kinds of very complex issues, we need those other staff positions. But those are not the ones to get funded until the very end, and of course, they are the ones that go first. So I share your concern. I do feel comfortable, however, about the fact that we can maintain confidentiality for STD reporting, and in this case now, HIV reporting. In Florida, for example, we do not report the names of newborns unless there are at least four of them in a local jurisdiction because it is too easy to figure out who it is until you get to at least that number. I think we need to look at models and be responsive to local constraints so that ah MILLER REPORTING CO., INC 507 C Sueet, N.E Washington, DC 20002 (202) 346-6666 97 if there were one local health department with only 25,000 population, that perhaps instead of reporting at that county level, there would be a regional or a district level that would collate the statistics and have the responsibility, so that someone in an adjacent county might be the staffperson who would follow up to do the personal interview, to try to protect that anonymity, particularly in those very small, isolated communities. I think that is an important issue, and I am glad you brought it to our attention. MR. MYERS: If I may respond as well, since Ohio is a home rule State. I think your question, Mr. Goldman, brings out an issue of public health today, and that is one of basic organization of public health throughout the country. In Ohio, we have 331 public health districts throughout the State. Thank goodness we don’t have 331 health departments servicing those districts, but we do have 156, I believe, at last county. Those are too many. And I think if we are going to organize a public health system in this country, not only for the response to AIDS but to the response of all public health issues, we have to get larger entities involved in the public health business. ah MILLER REPORTING CO., INC. $07 C Street, NE. Washington, D.C 20002 (202) 546-6666 98 I think when you have departments representing communities, like we have in our State 8,000 people, that local department does not have the resources to respond to any public heaith issue, let alone AIDS. And I think we need to look at consolidation of districts in Ohio--and I suspect this is an issue across the country--and clearly, when we consolidate, we then need to look at a resource base from the State and the local level in order to fund those programs. DR. DANDOY: Dr. Osborn, could I respond to this-- CHAIRMAN OSBORN: Sure. DR. DANDOY: --because I think the flip side of it is exactly what has been indicated. For those areas where there are those dozens and dozens of very small local health departments, it is probably inappropriate to expect them to have social worker, health educator, et cetera. In contrast to his 300 health districts in the State of Utah, we have 12, and so we have regionalized, and yet we still find there is as role for the State health department to provide those services by staff that go out to those areas because the local health departments can’t be expected to provide that. So”it is a cooperative arrangement. CHAIRMAN OSBORN: Thank you. ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 99 Diane? COMMISSIONER AHRENS: I have two questions, one to Dr. Dandoy and one to Dr. Magenheim. In following up on this issue of reporting, one of the jobs this Commission really has is to look at the development of HIV in the Nineties. To Dr. Dandoy, when we look at mandatory reporting--and I am talking about reporting by name--are there places in this country, States that have such a policy, and if so, what is the actual experience in those States in terms of whether or not the issue of people coming in for testing has been diminished because of those policies, and what does the future hold? Let’s look at 1998. Will this issue be the same kind of issue in 1998 as it is today? DR. DANDOY: I think you have a mix of programs throughout the different States. It varies from place to place. All States, of course, have reporting of the cases by name. When it comes to reporting HIV testing, most of them have that as well. One of the reasons is that CDC now requires for us to have money, the Federal money that comes from CDC, we must have a partner notification program; in order to notify ah MILLER REPORTING CO., INC. 507 C Suect, NE Washington, DC 20002 (202) 546-6666 partners, you pretty much have to have some kind of way to contact the positive people and know them by name. What some States have done, Utah being one of those, however, is we have developed a mandatory reporting program by State law, but we have one anonymous testing site in the State, one clinic where people who do not wish to give their name may come to be tested. They are counseled, they are asked to give the names of their partners, and interest- ingly enough, many of them will give names for partners, both sex and i.v. drug partners, even though they will not give their own name. So we find that we can do partner notifica- tion from the testing in that site. So this is the pattern. I think eventually, we will move toward all-name reporting and testing. We opted to keep an anonymous site because we felt there were still many people in our area who would not come in for testing because of concerns of confidentiality if they had to give their names. I think you are going to see more and more of the name reporting, though, in the 1990s. COMMISSIONER AHRENS: Thank you. I have a question of Dr. Magenheim as well. ah MILLER REPORTING CO , INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 101 CHAIRMAN OSBORN: Okay. I am going to need to ask everybody to be very brief, though, because we are way over schedule now, and we still have a lot of other people. COMMISSIONER AHRENS: Mark, you have some interest- ing experience about data on partner notification, both in the State of Florida and in Sarasota County, and I think it might be useful if you shared that data with the Commission. DR. MAGENHEIM: Yes, just briefly. Florida has 24 anonymous test sites and 135 confidential test sites, and of course, as you heard, they all require counseling before any blood is drawn, and it is all done by number, and the person has to come back two weeks later and show their number in oxder to be told the results. What we have found is that since partner notifica- tion began about two and a half years ago, we have not only maintained the number of people coming into the anonymous sites, but increased the number coming into confidential sites. Just like Dr. Dandoy mentioned, folks do come forward. They are I think trusting in Florida of the public health department’s maintaining confidentiality and know that it is important--I think we are appealing to their own sense ah MILLER REPORTING CO , INC $07 C Street, N.E Washington, DC 20002 (202) 546-6666 102 that their partners need to know, but the individual does not want to tell. With partner notification, we have now found, for example, in Sarasota County, we have notified over 1,000 partners and 35 percent of them are positive, and they would have had no way of knowing if we weren’t able to get to them and invite them in for counseling themselves. And in Florida it ranges from 8 percent to 45 percent in all those sites. So we find it is very important; it is helping us get to people who need to know their own risks. CHAIRMAN OSBORN: Harlon? COMMISSIONER DALTON: Yes. Dr. Dandoy, wearing your ASTHO hat, what is ASTHO’s current position on mandatory name reporting for people who are HIV-positive? And then the second question is given the experience in Utah with the anonymous testing site, that in fact people are willing to give names of their partners, why then do you imagine that you are going to move in the direction of all-name reporting rather than more anonymous sites? DR. DANDOY: ASTHO has not considered this issue in the last two years, and the position has been before to encourage the States to have name reporting. However, I will tell you that that has been an issue that has brought great ah MILLER REPORTING CO., INC. $07 C Sereer, NE Washington, DC 20002 (202) 546-6666 103 disagreement among the States. We have States where we feel very strongly that every case must be reported by name of HIV-positivity and we have other States who have fought against that and do not believe that that is the way to go. So again, as I said before, the 50 States vary from place-to-place. So we have encouraged States to develop a policy with reporting, but of course, we have no ability to mandate that or anything. The question was what did I see happening. I think that there is going to be more and more push by policymaking groups, i.e., Congress and State legislatures, to force the name reporting--that is why I said that--not by the public health community~-but I see this trend. Many people feel that that is an important way to go in order to require that there be thorough investigation of partner notification. So I think by legislative bodies, it is going to go in that direction. CHAIRMAN OSBORN: Eunice Diaz. COMMISSIONER DIAZ: I1'’11 make it real brief. One comment to Dr. Myers. I really appreciated you highlighting the importance of the coalition building, even prior to our getting a lot of those mechanisms functioning before AIDS, ah MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 {202} 546-6666 104 and I think this is really important. Unfortunately what we find in many parts of the country is populations that are benefitting or served by public health structures are disenfranchised; those who many times cannot really advocate or speak on their own behalf without a lot of work on the part of health professionals, community organizers, the social workers and health educators, who unfortunately we are mot having a lot of ability to retain in the system because of funding and all that. But I really would like to talk to you further. You could be helpful to this Commission in pointing out the way that other communities can organize, like Columbus, to get that kind of constituency behind public health efforts and service efforts at the local level. I do have one very small question for Dr. Magenheim, and it is almost a follow-up of Larry Kessler’s comment. Have you found any unrest in the membership of organizations you represent here as far as the Federal funding directly to community-based agencies for HIV efforts, now in some way eroding some of the possible control or organization, or at least handle the local and State public health organizations and agencies could have. I think that is really important because we get two different versions of this as we go around ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 105 the country, and I am wondering from the membership you represent, what is the feeling? MR. MAGENHEIM: Well, there is an interesting parallel. We visited this issue several years ago, looking at funding to local health departments to provide medical care versus funding from the Federal Government to the community-based health care centers. And there was a contention that we were fighting over small dollars to serve ithe same population. And I think we have resolved that by realizing we are scrambling for crumbs to deal with problems of patients that nobody else really wants to deal with; that we need to enlarge the pie'rather than to scrape over how big our slice is versus someone else’s. I think that unrest is slowing going away as people mature in their thinking that we have to form these coalitions and work together--not that community-based organizations should not get funded; they need to, they need more funding-- but of course, taking it away from the local health department creates a problem when we are expected to respond to many other problems that community-based organizations for AIDS do not have an expectation to respond to. COMMISSIONER DIAZ: But do they need to be funded ah MILLER REPGRTING CO , INC. $07 C Street, NE Washington, DC 20002 (202) 346-6666 106 directly is my question. DR. MAGENHEIM: I personally have no problem, and I don’t think most of our members do, although there may be some folks who have a concern. Direct funding is fine as long as there is an intent that there needs to be local coalition-building with those dollars and outreach and the same kinds of commitments and responsibilities that are the strings attached to the dollars that come to local government. COMMISSIONER DIAZ: Thank you. DR. MYERS: Dr. Osborn, may I briefly respond to the at as well from our association’s perspective? I would agree with Mark; I don’t believe our association members have a problem with direct funding. I think what we do have a problem with, though, is lack of notification of those dollars coming into local communities. That has happened consistently not only from the Federal Government, but unfortunately at times from State governments. And I think if we are to rely on the public health system to provide the leadership, the coalescing and the collaboration that we have been talking about, we at least have to know about what moneys are coming into our communities and the purpose for those money. ah MILLER REPORTING CO, INC. $07 C Street, NE. Washington, DC. 20002 (202) 546-6666 107 I would suggest to the Federal Government that there be a requirement of all directly-funded community-based lorganizations that they show evidence in their application and in their evaluation that there has been communication from the local health agency. DR. MAGENHEIM: The communication is the key. If I can just refer you to one example in your packet, Florida has a lottery reputation, and we are using that as a way for Icommunity education with teens. These are scratch-off cards. He funneled this money to a local community-based organization because we work closely with them. They did not get direct funding; we thought it was important; we gave the money to them. But they will also notify us when they can do something that we cannot do. If that is in place in a community, it works fine; if not, there can be that kind of unrest. CHAIRMAN OSBORN: Jim Allen very quickly, and then Dr. Mason. COMMISSIONER JAMES ALLEN: In part, my question has already been answered by your last comment, Dr. Myers, so let me just throw this out as a general question. What specific recommendations would any of you have to the Commission or to the Public Health Service in terms of programs or ways of ah MILLER REPORTING CO , INC $07 C Sereet, NE Washington, DC 20002 (202) 546-6666 108 doing things that would increase the collaboration between State and local health officials--recognizing that there is a wide diversity of ways of doing things in the States and areas around the country? DR. DANDOY: If I may comment--and it relates to the last question from Ms. Diaz--many of the State health departments do object to community-based organizations being funded directly by the Federal Government, going all the way down to that level, and we have tried hard to work with the Federal Government to indicate that we believe those funds should flow through the States so that they can be coordinated with all the rest of the providers and so that they can be part of a system that has some plans. That would be one recommendation. We don’t have any problem with services being provided by both local health departments and community-based organizations, but it definitely needs to be part of the total picture. DR. MYERS: I think there are probably two levels of collaboration that need to be increased. One--and this is happening; I’m not saying it is not happening, but I think if we can extend it--there is ongoing communication between CDC, ah MILLER REPORTING CO., INC. 507 C Street, NE. Washington, D.C 20002 (202) 546-6666 109 and ASTHO and Conference of Local Health Officers and NACO. I think that is good, and I just think we have to increase lithat level of communication more, in terms of policy for the country. I also think there probably needs to be a second policy tier set up, perhaps, and that is among those cities that have been impacted the most by this epidemic, and perhaps those conditions and problems in those cities are unique enough that there needs to be an ongoing communication mechanism between those cities and I would say representatives of all of those cities and the Federal Government directly. So from my perspective, I think there are two levels of collaboration that need to occur. COMMISSIONER JAMES ALLEN: Let me just respond back also. Again, I think that collaboration and communication back and forth is going to be extremely important because one of the reasons that Congress has pushed the Public Health Service to move into direct funding of community-based organizations is because of reports that filter back about moneys that have gone to the State level or the local level and never been expended, and that is an issue that obviously needs to be addressed also,:in terms of perhaps the resources ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, D.C 20002 (202) 546-6666 110 and personnel at those levels so that the moneys can be gotten out expeditiously. CHAIRMAN OSBORN: Let me give Dr. Mason the last go. COMMISSIONER MASON: All three speakers addressed the problem of resources, and it was clear at both the State and from NACHO that you have set aside other responsibilities so that you could pick up and attend to the HIV outbreak. Bill, I know the excellent job you have been doing in Columbus, and I appreciated visiting there. You sound like, at least in your specific health department, it sounded like maybe you have been able to keep up. That may or may not be true, and I'd like you to comment on that. And then let me ask you if the number of cases in your area of respon- sibility were double or triple what it is now, what would happen to other services that you are providing. DR. MYERS: We have been barely able to keep up, and right now the budget in our department is about $23.5 million a year. We do not fund a public hospital in Columbus or any other large, at least, direct care system. And out of that budget, we are now appropriated--well, our AIDS budget is about $1.8 million, so it is a significant percentage of the total budget. ah MILLER REPORTING CO., INC. $07 C Street, N.E. Washington, DC 20002 (202) 546-6666 111 Jim, what we have not been able to do is we have not been able to fund our perinatal clinics to the extent that we would like to do in Columbus. We have done a good job of maintaining our immunization levels, but we have not been able to fund our primary care system. We have six ambulatory care centers in Columbus--and by the way, they receive all local dollars; we do not have any Federal dollars coming into that system--but that system is now struggling, and particularly with the cost of pharmaceuticals that we provide to that system, all on a sliding fee, to those who cannot afford to pay or only pay a percentage of their care. I could go on with other examples, but I won’t take your time. So we are barely keeping pace. And as we look at our next two years, our 1991 and 1992 budget, at long last, a slowdown is coming to Columbus. We have had a very healthy economy. But over the next two years, my department has the risk now of losing between $1-$1.5 million of local dollars, and that is even going to put the squeeze on more. If we had three times the cases today that we have, we would clearly not be able to keep up. DR. MAGENHEIM: If I may just comment briefly, in Florida we are now looking at:a task force to make these ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 346-6666 112 tough decisions at the State level. For example, we are now calling it the "Titanic model". We are a sinking ship, and our priorities have been for women and children. What that means is we are looking at a 5.5 percent budget reduction starting October 1, and that means no chronic disease services. We will be discontinuing services for diabetes, for hypertension, for cancer screening, and we are focusing on trying to preserve prenatal care, to get 40 percent of women into care in their first trimester. We are looking at 90 percent by the year 2000 in our "Healthy People 2000" agenda. But we are not going to be able to do it, even to get 40 percent. We now have nine- and ten-week waits for first prenatal visits because we are robbing Peter to pay Paul. CHAIRMAN OSBORN: Is it okay if I steal the phrase the "Titanic model" for future speeches? DR. MAGENHEIM: Yes, you may--if you give due credit to Florida, please--or maybe we don’t want the credit. {Laughter. ] CHAIRMAN OSBORN: I think that this point we'd better take a break, for all sorts of reasons. Whereas I am rather gentle with the gavel about this important interchange, ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 113 I will be tough with it for a 15-minute break, and then let's come back right away. {Break. ] CHAIRMAN OSBORN: I think I am going to proceed even though a couple of the Commissioners still are on their way in, because we are running quite late now. I appreciate the patience of the next panel, and again we are blessed to have some very distinguished presentations by Dr. Jim Curran, Dr. Laurence Foster, and Dr. Joseph. And I am going to take the privilege of the chair to say that when we get around to honoring giants in this epidemic, there will be a lot to honor, but none greater than Jim Curran. Welcome, Jim. DR. CURRAN: Thanks, June. I think my going first is one of the reasons some of the Commissioners are probably late; they have heard me talk 156 times before. They know what I am going to say, and can say it better and more efficiently. I‘d like to thank the Commission particularly for your zeal and tireless efforts and for your ability of trying to stop the rest of us from becoming complacent as the ah MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 114 HIV epidemic matures. Ironically, we have had a 23 percent increase in cases this year, up to over 41,000, which is the first time there has been a percent increase in reporting over the previous year’s percent. Usually the percent keeps going down each year. I think that has been taken by the American public as we understand now that AIDS is a major problem, and we accept it, essentially. So thank you for not letting us do that. I'd like to speak about risk assessment in the ten minutes allotted to me by saying first of all that I think the risk assessment part of the public health effort was the earliest and most successful part, and the part about which many of us were most proud, at least early in the epidemic, and in a sense in some ways it is the easiest part. Uncover- ing the problem and showing what the problem is is, of course, sometimes easier than solving the problem. I would like to also thank Dr. Rogers for pointing out the importance of surveillance systems and take some credit on behalf of State and local health departments for the AIDS surveillance system, which is the most rapid and complete surveillance system of any public health surveillance ah MILLER REPORTING CO, INC. 507 C Sueet, NE Washington, DC. 20002 (202) 346-6666 115 system in this century-- COMMISSIONER ROGERS: I knew you'd turn that around and boomerang me with it, Jim. DR. CURRAN: Do I get an extra ten seconds? I‘d like to say also that AIDS surveillance is the example which provides the rule, if you will. I think that national AIDS surveillance and the timelineness of it has been the thing that has driven the public concern and public response to the AIDS epidemic. I take personally any attacks on AIDS surveillance, and I will defend them to the hilt, because I think that it has been in many ways the most important of our epidemiologic tools from the discovery of the first five cases in 1981, with all of the nonidentified risk follow-up that occurs from groups that have not been found to be other risk factors. Prior to 1983, early cases were discovered in transfusion recipients, persons with hemophilia, infants born to intravenous drug-using mothers, and sex partners of intravenous drug=-using mothers, and heterosexual contacts, so that prevention recommendations could be made by the public health service, the AMA and many other group well before the virus was discovered. ah MILLER REPORTING CO, INC $07 C Street, N.E. Washington. DC. 20002 (202) 546-6666 116 After 1,500 cases of AIDS, that which is reported now in about 10 days to the CDC, occurred in the first two years, there were widespread prevention recommendations which looked very much like the ones we have today. AIDS surveillance and follow-up, then, remains very important both from the point of view of understanding trends in serious morbidity and mortality, as well as follow-up of nonidentified risk patients. The one most recently reported, of course, is the transmission from the dentist to the patient, which began with the report to a State health department of a patient with no identified risk. We don’t always like what we find, but we find the truth often through AIDS surveillance. AIDS surveillance also leads to accurate mathemati-— cal modeling using natural history of the disease, and has led to all of the projections and the estimates of the number of infected people and the fact that the area under the curve that is included in the handouts that the Commissioners received is still much larger in the next three years than it has been in the previous nine years. I must say that the other aspects of AIDS surveil- ah MILLER REPORTING CO , INC, 507 C Street, NE. Washington, DC 20002 (202) 546-6666 117 jlance have pointed out that small cities and rural areas are now catching up in terms of rates to those large cities where AIDS was first reported, and that the trends are showing that AIDS cases are increasing fastest in the Southeast, smaller cities, rural areas, women, minorities and through heterosex- ual contacts; and gratefully, decreasing or leveling off in persons who acquire the virus through blood transfusions or clotting factors. Combining vital statistics data which, as you point out, is a couple years behind, with AIDS surveillance, we have been able to show that HIV and AIDS-related conditions are about 85 percent reported to the national surveillance system, but that HIV infection has reversed the downward trends of mortality in men from 25-44 that had been occurring in the United States for much of the past several decades. HIV and AIDS in 1988 accounted for about 13 percent of deaths and became in 1987 the leading cause of death in women between the ages of 15 and 44. It is important to recognize that AIDS cases are reported some 3-4 years beyond the prevalent HIV infections and occur probably 7-10 years after initiation of HIV infection, so that HIV sero surveys, which are represented in ah MILLER AEPORTING CO., INC. 507 C Street, N E. Washington, DC. 20002 (202) 546-6666 118 the packet called "HIV Surveillance" that you received, and other aspects of HIV surveillance, including HIV reporting, put together the entire puzzle of what is known about the linfected population in the United States. You will be receiving within minutes after the Assistant Secretary for Health receives his copy the National HIV Seroprevalence Survey Report which is currently in press. The Commission will get copies of that--it is part of Dr. Mason’s distribution plan. I might mention that HIV surveillance represents standardized evaluation of trends meant to assist State and local health department in assessing problems and targeting their response and evaluating their efforts. Logically, what we want to know the most is how many people are becoming infected with HIV and how could we have prevented that; have we done everything we can. I will mention only a couple of the HIV sero Surveys--that in childbearing women, those in sentinel hospitals and those done by the Department of Labor and the Job Corps. The survey in childbearing women measures HIV seroprevalence in women who are delivering infants in the ah MILLER REPORTING CO., INC. 507 C Sureet, NE Washingten, DC. 20002 (202) 546-6666 119 United States by testing the newborn filter paper specimens for maternal antibody to HIV. In this, more than 1.2 million specimens have been tested in 44 health departments through- out the country, and we estimate that 1.5 per 1,000 live births come from an infected women who is delivering a baby. That is one per 650 or so. That is, nearly 6,000 pregnant women in the United States are infected with the AIDS virus and delivering liveborn infants. It can be further estimated that about 1,500-2,000 of those infants will themselves become infected with HIV, and under current circumstances, eventually develop AIDS; and that this number is about three times the total of the number of perinatal AIDS cases reported in the past years. So if you will, we are about three times worse off than the number of reported pediatric AIDS cases would tell as . Another way to look at this is that about 6 or 7 percent of reproductive-age women in the United States deliver a child each year. It is a crude approximation to say that those women who are HIV-positive are representative of that 6 percent, but I’11l do it anyway, and point out that there are about then 100,000 infected reproductive-age women. ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 120 This is reassuring for the estimate of one million infected persons, women being about 10 percent of the infected persons in the United States, plus or minus. That is, there are about 100,000 infected women in the United States, and this group represents the most difficult to serve and perhaps in some ways the most under- served of all HIV-infected populations. The survey in sentinel hospitals involves 40 hospitals in 30 metropolitan standard areas. And you received a reprint from the recent New England Journal article that pointed out that 1.3 percent of persons attending these hospitals who were attending for reasons unrelated to linfected disease, cancer, or unrelated to risk factors for AIDS, were themselves positive for HIV. There was a 70-fold variation from the hospitals — with the highest prevalence rate to those with the lowest prevalence rate, once again pointing out that the problem that we want to say is America’s problem is in fact part of America’s problem 70-fold times more than it is other parts lof America’s problem. This points out that we have people coming in contact with the most sophisticated part of our health care aft ah MILLER REPORTING CO., INC. $07 C Sereet, NE Washington, DC 20002 (202) 546-6666 121 system and wandering through it with broken legs and other things, into and out of our hospitals, without necessarily getting any counseling, testing or further follow-up and medical care. This will result in I think being more expansive in allowing recommendations for counseling and testing within hospitals, but we are not necessarily sanguine about the ability of those hospitals to do this in the best way, as some have pointed out. The Department of Labor tests 60,000 entrants to the Job Corps each year, ages 16-22. The average age is slightly less than 18 years of age, and they do HIV testing and counseling in all entrants. They do not refuse admission to the Job Corps as a result of HIV testing and counseling, but .4 percent, or one out of 250 of these disadvantaged youth, are infected with HIV on the way into the Job Corps. One out of 250, average age less than 18 years. And now they have tested with some stability in these numbers nearly 180,000 disadvantaged youth. Since I have taken all my time, the other parts of risk assessment include behavioral risk factors, surveillance and follow-up to deai with what we know are problems of behavior before HIV. Surveys in high schools show that 60 ah MILLER REPOATING CO, INC. $07 C Sureet, N E. Washington, DC 20002 (202) 546-6666 122 percent of high school students in ninth grade report having had sexual intercourse, and I think 20 percent have had more than four partners. We have problems that are waiting to happen as related to HIV and AIDS. I find it unusual when people talk about sexual behavior to say, well, we are in a low-prevalence state, and we don’t have to worry that 60 percent of our people in high schools are having sexual intercourse. Is there no such thing as unwanted pregnancy or syphilis or gonorrhea or other things to worry about? HIV reporting and follow-up has been alluded to by many of the previous speakers and has been shown to be a useful surveillance tool in a:handful of States. Thirty- three States require HIV reporting, but only 22 require reporting with names, and only a handful of those actually do it with any kind of follow-up. So HIV reporting as it exists in the United States is a very infrequently used prevention tool and extremely underfunded at the State and local levels, in part as a reflection of State and local priorities. I think that often the problem is that there is a legislator who is at odds with the State and local health departments, who passes HIV ah MILLER REPORTING CO., INC. 907 C Sueee, NE Washington, DC 20002 (202) 546-6666 123 reporting laws without the health department being onboard. Where HIV reporting and follow-up has worked the best--States like Minnesota, for example--is where there has been active follow-up with name reporting and active iden- tification of the service needs of the people and finding out whether those service needs are indeed met. So you have a more comprehensive system of HIV reporting which, in the case of Minnesota, and in a few other health departments, has resulted in valuable information and valuable services. I will not say anything about epidemiologic studies except to end by saying that we have an additional crisis in the area of health care workers and their patients. We have to take as a major priority, although not a major risk group, tthe concerns of health care and laboratory workers in dealing with HIV infection and dealing with their risk. The recent case of the possible transmission from the dentist to the patient serves to focus that crisis and focus even further the division between the health care system and the patients whose needs it is serving. Thank you. CHAIRMAN OSBORN: Thanks very much, Jim. Dr. Foster? ah MILLER REPORTING CO,, INC. 507 C Streer, NE Washington, DC. 20002 (202) 546-6666 124 DR. FOSTER: I am Dr. Laurence Foster, State epidemiologist for Oregon, and representing the Council of State and Territorial Epidemiologists. I am very appreciative of your interest in the issues that we in the public health system face. At some risk of losing the connections between my thoughts, but for the sake of allowing time for discussion, I am really going to just hit the highlights of my presentation. Please do read my already brief testimony at your convenience. The central aspect of epidemiology is the systematic collection and analysis of data about health events and factors associated with those events. Jim has already talked about surveillance. I would just like to re-emphasize that the real purpose of surveillance is to help us focus preven- tion activities and to help us know where we are heading in terms of health care service needs. Another primary example of this systematic data collection and analysis is that of formal epidemiologic studies, by which I mean studies where we compare groups of people and try to draw inferences about their characteristics and what it means for disease causation or for evaluation of program. ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 I would say here only that study design and conduct is a very complex matter and has to be carried out compulsive- | ly and objectively. Turning to describing what State epidemiologists do away from this abstract concept of what epidemiology is, prior to June of 1981, the typical State epidemiologist had a variety of responsibilities. Essentially all of us were responsible for controlling the traditional communicable diseases such as hepatitis and food-borne illness, but many of us also had responsibilities for administering control programs such as immunizations, tuberculosis and sexually- transmitted diseases. Since 1981, when AIDS was first recognized, the activities that State epidemiologists were carrying out to fulfill these responsibilities have continued unabated, but we have also picked up responsibilities for HIV and AIDS epidemiology. I would like to give some specific examples of the things that State epidemiologists are doing. First, of course, as Jim has already described, we in partnership with local epidemiologists are doing the legwork of AIDS surveil- lance and also HIV surveillance and the seroprevalence ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, D.C 20002 (202) 546-6666 126 studies. Once the infectious etiology of AIDS was understood, State epidemiologists also played a central role in providing information about how transmission could be prevented to the public. But in addition to that role of information about |prevention, epidemiologists used their information and communication efforts to help stop both public and legislative momentum toward inappropriate responses to the HIV epidemic, such as isolating AIDS cases, prohibiting gay men from working as food handlers, and excluding HIV-infected children from schools. State epidemiologists have made major contributions to the implementation of universal precautions in the health care setting. They have contributed to the administration of overall HIV prevention programs, including the counseling and testing programs and the education efforts. But the thing I want to emphasize among our activities is that of formal epidemiologic studies that we have conducted to answer critical questions of policy- setting, program evaluation and direction. There are too many, Of course, to mention in this brief testimony but I want to give a few examples from my own State. ah MILLER REPORTING CO., INC 507 C Sueet, N.E. Washington, DC 20002 (202) 546-6666 127 First, we demonstrated for policymakers and skeptical health care professionals through formal comparison of confidential testing and anonymous testing that early on in the testing scenario and in the State of Oregon that the anonymous method was more effective in bringing in the higher-risk gay men or services in this area. We have also demonstrated that traditional counsel- ing and testing is not sufficiently effective by itself toward achieving sexual and needle-sharing behaviors among many high-risk individuals. We have evaluated the effectiveness of intensive public health nurse follow-up of intravenous drug users for the purpose of helping them change sexual behaviors and needle-sharing practices. And we have demonstrated that traditional partner notification for predominantly I.V. drug-using syphilis cases reaches only a small proportion of their sexual and needle- sharing partners, suggesting that the same may be true for HIV-infected intravenous drug abusers. I would add here that Colorado is just now complet- ing a very extensive evaluation of its partner notification program over a variety of risk groups, and we are eagerly ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 128 awaiting their results. In any case, we have faced many critical issues over the nine years of the recognized AIDS outbreak, but there are few from the point of view of the epidemiologist that I would like to bring your attention to especially. First, there must be a dramatic increase in administrative and fiscal commitment to the evaluation of prevention programs such as partner notification, counseling and testing and the variety of risk behavior change efforts underway. We must do this to make sure that we are achieving the greatest possible benefit for the dollar spent. Second, there must be a continued commitment to active AIDS case and HIV infection surveillance as well as selected HIV seroprevalence studies. Combined information from these activities is critical to program planning for both health care and prevention services. Drug abuse must be addresed as a public health problem by public health agencies because it underlies the future direction of the HIV epidemic as well as a myriad of other public health problems. By this, I mean that drug abuse must be studied from an epidemiologic point of view, and then the results of such study must be used to direct ah MILLER REPORTING CO., INC. 307 C Street, NE Washington, DC 20002 (202) 546-6666 129 prevention programs. There must be an increased commitment to epidemio- logic study of special issues to serve as the foundation for further policy development. Official public agencies at all levels of government must play a central role in our evolving response to the HIV epidemic. This central role is based upon their established systems for surveillance and epidemiologic study to serve as the basis for policy and program development, but it is also based upon other systems unique to public health agencies-- systems for planning in cooperation with community members for the whole community, systems for coordinating services with private health care sector and community-based organiza- tions to assure that some classes of potential clients do not go unserved, and systems for assuring maximum confidentiality. Finally, Federal funding should not be provided in a manner that pits prevention against treatment in a battle for resources at the State and local level. We must of course provide medical care for those who are infected, but to do so at the expense of prevention efforts will only lead to a relentless worsening of our situation. Providing Federal prevention and treatment dollars MILLER REPORTING CO., INC. $07 C Street, NE. Washington, DC 20002 (202) 546-6666 130 to the State in the same grant increases the risk that this will occur. Thank you for your attention to these concerns. CHAIRMAN OSBORN: Thank you very much, Dr. Foster. Dr. Joseph? DR. JOSEPH: Madam Chairman, members of the commission, I appreciate the opportunity to appear here today to represent the Association of State and Territorial Public Health Laboratory Directors and to present the role that of public health laboratories in the HIV/AIDS epidemic and also to point out some of the issues which now confront us and pertain to support of this service. From the beginning of the epidemic public health laboratories have been involved with providing the HIV testing to support counseling and testing sites where the high-risk individuals could receive testing, done anonymously, | in some cases confidentially, and counseled about their HIV infection and their high-risk behavior. Public health laboratories now participate extensively in the seroprevalence studies, particularly as part of the family surveys CDC is conducting, and these provide the selected public health clinics. It is certainly ah MILLER REPORTING CO., INC, 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 131 extremely valuable as we see in our individual States for the health officials to track this epidemic and monitor trends of seroprevalence over time. It is an extremely valuable service that the public health laboratories need to provide as part of this infrastructure in dealing with the epidemic. Public health laboratories have also been called on to provide services beyond what we receive assistance in Federal funds, to assist physicians in diagnosing HIV infection, in diagnosing AIDS, AIDS-related infections such as tuberculosis, which has increased, parasitic diseases, increasing viral diseases, and also fungal infections. So it has created lot of demand for public health services beyond the actual AIDS infection itself. In 1986 the Association began a consensus conference process to begin standardizing methods for HIV testing. It was very obvious at the time that we needed to begin some kind of standardization process, and particularly in the interpretation of the laboratory results. There were various methods being used for interpretation. A consensus conference on human retrovirus testing is now held annually by our Association, and those consensus conferences are used to standardize not only methodology but ah MILLER REPORTING CO., INC. 507 C Street, NE. Washington, D.C. 20002 (202) 346-6666 132 interpretation, but also to deal with the issues of HIV-II in addition to HIV-I as well as HTLV-I and II, and providing some standardization. The criteria for interpretation, as I mentioned, has been an important issue. We have reached consensus on the interpretation recommended finally by the Cpc in the morbidity/mortality weekly report, as interpretive guidelines for the Western blot. The significance of this is that it has increased the number of true positive, or the greatest number of true positives are obtained through this interpretation with the fewest number of equivocal results. This is very important because equivocal results continue on and on and create great anxiety for the individuals. So I think that part of the Association’s activities has been extremely important. 7 The role of public health laboratories in this epidemic continues to expand. We have had to deal with issues of quality assurance of HIV-related testing in public and private sectors. We have had to deal with issues to assure accuracy in testing in both the public and private sectors for HIV infection and management of cases. Develop- ment and validation of laboratory methods is an ongoing process for us because of the changes that are occurring in ah MILLER REPORTING CO., INC. $07 C Street, NE. Washington, DC 20002 {202) 546-6666 133 the testing; regulatory standards in some States relating to HIV testing and the quality of that testing; also, just mentioned, the consensus standard process for HIV testing, but more recently dealing with the issue of clarity and accuracy in reporting of those results--even though they are done reliably, getting the result out to the end user in a way that they do not create confusion or misinterpretation. Traditionally, the public health laboratories have also served as reference labs to assist in the diagnosis for infectious communicable diseases. That role has not changed and has been very important in diagnosing HIV infection. Private laboratories regularly call on the State public health labs to deal with the problem cases of HIV. Laboratory training’ also is a traditional role of public health laboratories, intended to improve the quality of laboratory services, and it is especially so for HIV testing. In 1988, a national laboratory training network was established by a joint effort between our Association and the CDC Public Health Practice Program Office to bring regional training courses to all health laboratories across the United States. Training courses in HIV testing were given priority ah MILLER REPORTING CO., INC. $07 C Sweet, NE Washington, DC 20002 (202) 546-6666 134 because it is well-recognized that appropriately trained personnel are crucial to the quality of lab services. Performance evaluation is an essential component for assessing the reliability of the testing for HIV, and through efforts of our Association, the CDC has established a National Model Performance Evaluation Program. There are nearly 1,400 laboratories in the United States participating in that performance evaluation, including the State and local public health laboratories. They are voluntarily enrolled in this program, and it provides them with an opportunity to evaluate the performance that is going on in their individual laboratories. The information that is being obtained from this Model Performance Evaluation Program will in time help to enhance the reliability and the quality of HIV testing. Another significant role of the public health laboratory as I mentioned is regulation of the quality of laboratory services. We feel that public health laboratories do have a responsibility to oversee the quality of these services provided to the public within their jurisdictions and to take whatever measures are necessary to upgrade and ensure that quality. ah MILLER REPORTING CO., INC. $07 C Sueet, NE. Washington, DC 20002 (202) 546-6666 135 HIV testing continues to undergo rapid change due ito introduction of new technologies, modification of the existing tests and the application of these tests to the changing needs of the HIV/AIDS epidemic. These dynamic forces necessitate an ongoing and comprehensive standardization in the monitoring of test performance in the way they are applied in public health. Public health laboratories, through our Association, have assumed an important responsibility. Recent recommendations for the management and treatment of asymptomatic HIV-infected persons have caused State and local public health laboratories to re-evaluate their traditional diagnostic and supportive roles. The purpose of these recommendations is early intervention to prevent transmission of HIV and to delay disease prevention. The new guidelines call for regular monitoring of the HIV-infected asymptomatic individual by laboratory methodologies that are not typical of the public health laboratory. Public health laboratorians are also concerned about the development of drug resistance that may occur in individuals being treated and the need to do drug suscep- tibility testing in these instances. ah MILLER REPORTING CO., INC. 507 C Sureet, NE Washington, DC. 20002 (202) 546-6666 136 The public health laboratory is now confronted with issues such as investing more than $250,000 in instrumentation to provide monitoring and measurement of the immune status; also in establishing laboratories that can be used for culturing of the virus in individuals who are being treated and to determine drug resistance, and in this regard providing safe and appropriate laboratory facilities to protect laboratory workers who have to culture the virus. These new responsibilities mean that we have to acquire additional staff with specialized training. And finally, with some new sophisticated tech- nologies, such as the polymerase chain reaction used to identify virus that may be present in a very small quantity in individuals, particularly for the diagnosis of HIV infection in infants born to infected mothers--that is a major step, and if the public health laboratories are going to assume that responsibility, they must have the necessary facilities. All this brings us to the need for adequate resources, and that is always where we end up--by having the adequate resources at State and local levels to support the public health laboratories. Strategies for funding the ah MILLER REPORTING CO., INC. 307 C Sueer, N.E Washington, D.C 20002 (202) 546-6666 expanding role of health department laboratories in the early intervention and treatment are urgently needed. These issues among others have generated concern among directors of State public health laboratories, and a panel of experts convened in December of 1989 to address the issues. The report of the panel on "The Public Health Laboratory Role in Early Intervention and Treatment of HIV Inactions" was adopted by our Association and by the Associa- tion of State and Territorial Health Officials in July of this year. It was noted that while the content and direction of the report may represent a departure for current public health laboratory practices in some jurisdictions, it does represent the first opportunity that our Association has had to call attention to the primary role in the HIV/AIDS epidemic. I’m not sure whether the panel has received a copy of the report, but I do have copies to make available to you. Thank you. CHAIRMAN OSBORN: Thanks very much, Dr. Joseph. Questions from the Commissioners? Dr. Rogers? ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC. 20002 (202) 546-6666 COMMISSIONER ROGERS: First, Jim, thank you for pointing out--and I think you made my point very eloquently-- it has indeed been some of the swift data on AIDS that has helped drive the system, and it could be done with diabetes and heart disease and arthritis and a bunch of other things as well. And Dr. Foster, I just wanted to thank you for bringing some science into the anonymous versus mandated reporting. It has been refreshing to read your piece, and I think we were all edified by it. I hope there is more of that, rather than just emotional arguments, about what works and what does not. CHAIRMAN OSBORN: Harlon? COMMISSIONER DALTON: Actually, I wanted to make the same point to Dr. Foster, but to express my concern about what happens next. That is, I haven’t seen that the debate-- and it is not your fault, of course--has been informed by the fact that we’ve got studies to work from. So I wonder about how you imagine we can get the word out. DR. FOSTER: I am not sure I understand your question. COMMISSIONER DALTON: I don’t, either. For ah MILLER REPORTING CO., INC. 507 C Sereet, N.E Washington, DC 20002 (202) 346-6666 139 example, the Oregon study comparing anonymous testing sites with confidential testing sites, its seems to me has obviously profound implications for how we go about setting up testing sites in the future. It appears that the trend is away from anonymous testing sites, so it seems that many people do not seem to be getting the message. Similarly, the study that you referred to which essentially demonstrated that our now traditional ways of going about testing and counselling in fact do not in and of themselves alter behavior. It seems to me that has profound implications for how we think about counseling for maybe looking at what the current regime is with respect to counseling, thinking about how we can do it better, and yet I don’t see that cause being taken up, either. And I guess my question is how do we then see to it that the science then gets turned over into more thoughtful policy. DR. FOSTER: A big question. At the State level, we are trying to deal with this issue of the inadequate effectiveness of simple counseling and testing by quickly moving--well, first of all we tried to deal with it by making sure we were doing the best possible job we could in the counseling and testing setting and evaluating whether ah MILLER REPORTING CO., INC 507 C Street, N E. Washington, DC. 20002 (202) 546-6666 140 enhancements of our post-counseling message particularly could help benefit. But we are trying to quickly move to other ways of helping deal with the behavior change needs both for sero-positive and sero-negative persons. For jexample, we are evaluating, as I mentioned, ways of trying to persuade I.V. drug users to not only stop using drugs--which, jof course, is the optimal thing--but if that is not possible for the individual to change their needle-sharing behaviors, to change their sexual practices so that they protect others. And we are trying to evaluate that, too, and we will promul- gate the results of our findings to CDC, to other State health department and hopefully receive reciprocal information from other States that are doing similar kinds of activity. I would emphasize that as we do these studies that geographic regions are different, risk groups are different within regions, and we need to be careful not to generalize from the findings of one study of a particular risk group in one geographic area to say that it applies everywhere. There needs to be a lot of such study, and we need to try to put the composite results of it all together into policy. We are finding CDC very receptive to the kinds of things that we are trying to do both in terms of trying to ah MILLER REPORTING CO., INC, 907 C Sacer, NE Washington, D.C 20002 (202) 346-6666 141 help support it, but also in terms of trying to help get the tinformation out. COMMISSIONER DALTON: I also have a quick question for Dr. Curran which I will try to get clear the first time. I understand I cannot challenge you about the importance of surveillance if I don’t want to fight--and I don’t--nor do I think anybody would disagree that surveillance is terribly important has been demonstrated to be in terms of this epidemic. The difficulty I have is that that is a term that covers a rather broad waterfront of means of collecting information. You in your testimony, for example, talked about some of the quite useful data that has come out of the Job Corps testing program. That, however, is a program of mandatory testing which I for one would oppose even though it yields guite wonderful data. And my concern is that when one sort of rings the bell for surveillance while almost in the same breath talking about the kinds of limitations that ought to be placed on data-gathering for one reason or another, it encourages gathering mechanisms like mandatory testing. DR. CURRAN: Well, I don't think it encourages policy changes. I mean, I to some extent disagree with the ah MILLER REPORTING CO., INC 507 C Street, N.E Washington, DC 20002 (202) 546-6666 142 connection. I think that one of the problems has been that we have not set forth--"we" meaning all of public health-- good data systems to evaluate a lot of our policies. I mean, it really is ironic that the U.S. military, which had the most aggressive mandatory testing policy, also had to deal best and most forcefully with dealing with the medical care needs of their infected soldiers and to set up systems to evaluate them, and also had to deal with the issues of confidentiality in testing applicants. Now, I am not saying that the U.S. military policies were right. I am just saying that a lot of the debate about testing and reporting has allowed us not to deal with a lot of the issues that we have to deal with later. Testing and counseling is another example. Does testing and counseling work? Well, what do you want it to do? What I want it to do is I start from a premise that there are one million infected Americans, that all of those million infected Americans need to be under very, very close, long-range counseling and medical care; that no infected American should go more than a month without seeing a doctor, maybe two months. Now, the thing is how many of them know they are ah MILLER REPORTING CO., INC. 507 C Street, N E. Washington, DC 20002 (202) 546-6666 143 infected; how many of them are doing that right now; is the problem just access? Is it utilization? Are all communities going to these anonymous testing and counseling sites? What is right for a well-informed Ph.D. graduate in terms of their ability to access the health system and decide what is best for them may not be right for an inner-city person with no knowledge or access to health care or knowledge about HIV. So my view would be that we ought to start as a general goal that all million infected people should be under long range confidential follow-up and care and that our systems to do that, our reporting systems and our evaluation systems, our surveillance systems, if you will, should be keeping track of how good that is being done. And that is how you ought to evaluate testing and counseling. What happens to the people six months later? Now, how do you do that without some sort of name or some sort of link-up? I mean, what do you do when you find out there are 35-40 million HIV tests done each year, and how many people are having their 12th test done and their llth testing done, in the hope that it might turn negative? Waht does a system like that mean? Zippo is what it means. You have got to have some link-up. MILLER REPORTING CO., INC. $07 C Street, N.E Washington, DC 20002 (202) 546-6666 If you have an Americans with Disabilities Act, and you’ve got a State or a local health department that can deliver the mail, that can take care of everybody who is HIV- infected, then we have to stop resisting keeping the names and identifiers. If you can’t deliver the mail, then of course you’re not going to want to keep the names because then you’ve got to follow the people. So there can be kind of a coalition between those who can’t deliver the mail and those who don’t want names, and that resists progress. I want all those million people taken care of by na good doctor someplace, and then we will evaluate whether there are behavior changes. You can’t evaluate 15 minutes or 45 minutes of counseling and ask has that changed their life; it doesn’t make sense. Pardon me. That wasn’t my question. Surveillance is good. CHAIRMAN OSBORN: Don Goldman, then Diane. COMMISSIONER GOLDMAN: Dr. Curran, I am happy that you brought up the military analogy, and I think you are absolutely right. I think if the military had instituted a policy in which it, like some other parts of our health care delivery system, takes people who it finds have AIDS or are ah MILLER REPORTING CO., INC. 907 C Street, NE Washington, DC 20002 (202) 546-6666 145 infected with HIV and throws them out on the street, then the response to that program of mandatory surveillance might have been substantially different. Likewise I think it is pretty clear that if people with AIDS and HIV infection were assured of treatment, the voluntary way which people would readily enter the system and be tested would probably rapidly increase as well. But I’d like to ask you a question--I was just struck by Figure 4 from your presentation and the death rates for AIDS and HIV, another leading cause of death in women 15- 44. I looked at it, and I said to myself if I did not know which disease were which, and I simply cut off the right- hand side of that chart, and I said where ought we be devoting a substantial portion of both our surveillance evaluation as well as our prevention and health care ac- tivities, clearly, that little line of Number 8 would be the one that I think any rational person could say ought to really be an almost all-consuming activity. I was wondering if you could explain why in light of that you feel--I mean, things like the failure of funding of the Ryan White CARE bill just doesn’t seem consistent with graphs of this nature. Perhaps you could explain--and I am ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 146 not asking you to justify it, but I am asking you to explain it to me from a rational perspective. DR. CURRAN: I don’t want to defend the military-- particularly Dr. Lanier here, who can do that--but I think that one thing about keeping the data on the military recruit applicants, there has been a steady decline in prevalence in military recruit applicants who are white males, and much less of a decline in women and in minority males. That is very consistent with a couple of things happening, one of lwhich is a higher proportion of infected white males in the country knowing their own status before they go into the military, which I think is an example of the kind of thing I was saying to Dr. Dalton, and that is that the issue of our voluntary testing and counseling system does not serve all populations well. One population that is poorly-served by the architects of the prevention programs in the mid-1980s is the urban female. The urban female is not all women in the United States. Nearly half of the infected women in many surveys are intravenous drug users. Many of them are very poor. Two- thirds are black and Hispanic minorities. Why isn’t this up there in the concerns of everybody who reads Cosmopolitan and ah MILLER REPORTING CO, INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 147 Glamour and so on? It isn’t even identified with by mid- dieclass minority women. It is a big inner city problem that has got to be dealt with in the context of how do inner city women get their health care and behavior change and their socioeconomic status and a whole lot of other things. It is tough. It is real hard. And why isn’t it perceived to be a bigger problem? |\I agree, but I don’t think we can take a middleclass, mid- Eighties view and say what we need is more voluntary testing and counseling centers in the inner cities. That isn’t going to do it. CHAIRMAN OSBORN: Diane Ahrens. COMMISSIONER AHRENS: I think maybe I am following up on what I am just hearing in terms of a comment, but I would I guess address this to-Larry and to Dr. Curran. I want to try to say this right. As we look at the 1990s, and whether you call in the second wave or the third wave, but what is coming in the door, do you feel that there is a difference of opinion or a difference of feeling or a difference in attitude on the part of the populations to be served--I am not talking about the professionals out there and their attitudes; I am talking about the populations to be ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 148 served in this whole issue of surveillance, confidentiality vis-a-vis anonymity--and how this is viewed by the people that we are going to be increasingly servicing? DR. CURRAN: Dr. Foster wants the first word. DR. FOSTER: I would respond simply by saying yes, I think that from the very beginning of the HIV epidemic, the situation has been evolving in terms of who is involved and lwhat their attitudes are toward services and their fears about discrimination and so forth. Clearly, the epidemic is moving more into the intravenous drug use community in States such as mine where it has been virtually absent. Clearly, the epidemic is moving more into the heterosexual population; and clearly, even among gay men, who remain a group at risk, the attitudes and involvement with the public health system are indeed changing. And I think that we public health agencies have to be very sensitive to the evolution of this epidemic and who it is affecting and how people feel about how we should be responding and try to work within the community to deal with that evolution. I am trying to make it as concise as possible. Am |I hitting the target? ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 149 COMMISSIONER AHRENS: Not exactly. DR. FOSTER: Okay. Help me focus a bit. COMMISSIONER AHRENS: Well, you speak in generali- ties about the change--what is the change? DR. FOSTER: I think Jim has alluded to one, this issue of anonymous testing. Our study was several years ago, and one of the things we are desperately trying to do is figure out a way to re-evaluate anonymous testing in light of the fact that we now have a treatment that genuinely can benefit a person who is HIV-infected, so there are a lot more reasons for an individual to want to come in. I think that among gay men, at least in my States, the fears about confidentiality in the public health system are diminishing tremendously because they have come to realize that they can trust the public health system to protect that confidentiality and the fears of a legislature coming in and suddenly declaring that a list of name that the health department holds should be published in the local paper seem to be diminishing, at least in my State. The recognition of the involvement of women and children in the HIV epidemic I think is dramatically increas- ing not just in my State but throughout the country; it is a ah MILLER REPORTING CO , INC. 507 C Steet, NE Washington, DC 20002 (202) 546-6666 150 whole different population that needs to be served from the population we were trying to serve in the early Eighties. Issues such as partner notification--if I even mentioned that word in 1984 in Oregon, I had to quickly duck because of all the buliets that would come my way. We are rapidly evolving into a system of partner notification, starting with the concept that those who have no other way of knowing that they might be exposed--for example, the wife of a closeted bisexual male, who thinks she is in a monogamous relationship--that partner notification is absolutely essential in that situation, whether the public health agency persuades the infected individual to do the notification or whether we do it ourselves; revolving from that step into trying to deliver partner notification to the whole range of HIV-infected persons, but recognizing that that is not necessarily the most efficient or effective way to reach the highest-risk people with the message that you are at risk, you need to be tested, there are benefits to you from being tested and finding out if you are positive to get into early intervention, if you are negative to benefit from counseling and behavior change follow-up. CHAIRMAN OSBORN: I need to ask the Commissioners ah MILLER REPORTING CO., INC. $07 C Sereetr, NE Washington. DC 20002 (202) 546-6666 151 to be very brief because we are so far behind schedule now. I have Scott Allen, Jim Allen, and Harlon Dalton. COMMISSIONER SCOTT ALLEN: I have a question for Dr. Curran. You talked about every person being under a doctor’s care, and then it is okay to do name reporting and so forth, and that we should work together and so forth. My question is do you have a minimum standard of care that you would say is a criterion before name reporting takes place? For instance, are we talking about CD4, are we talking about pentamidine, are we talking about AZT, everyone under 500? Are we talking about how many visits? What is the minimum standard of care that you would suggest? DR. CURRAN: It is really quite easy, I think, to identify a standard level of care for HIV-infected people. It is in virtually every textbook almost now. All the new textbooks in medicine will say people who are HIV-infected should be followed every--and there will be some variability- -three months, six months, two months, until they get to a certain T-cell level. There will be some elements of clinical judgment and some disagreements about supplementary tests in addition to CD4 testing. And some people will take ah MILLER REPORTING CO., INC. 507 C Sereer, N E Washington, DC 20002 (202) 546-6666 152 zidovudine; some doctors will be very active about using it between 200-500, and some will wait until it gets to 350. There may be some variation, but there is no debate in the medical community about the need for active, close follow-up of HIV-infected people with immunologic monitoring and PCP prophylaxis and TB skin testing and isonines [phonetic] for people who are positive and a variety of things like that. There is no debate about that. It is really quite easy. iThere is a standard of care, and it is a standard of care that most people who get it--I am sure some care is going to be better than others; it is going to be like every other disease. But I think that unless you can deliver that, a lot of all this debate--the thing is, it isn’t a question of set all this up before we have any public health measures, or let’s have the public health measures and hope it doesn’t get set up--it doesn’t work. You've got to deliver the whole package at once. And you can’t resist the public health measures and say HIV reporting is the worst thing in the world, even in those places that promise people care if they find it. I mean, there are some States that every case that ah MILLER REPORTING CO., INC. 507 C Sueet, NE. Washington, DC 20002 (202) 346-6666 153 is reported, they go back to the doctor, they give him the standard of care, they tell them where they can get T-cell testing, they provide the insurance patients. I mean, is HIV reporting by name bad, then, for those benevolent States that can afford it? It is no accident, by the way, that HIV reporting is done in States where the prevalence is extremely low, and that States like California and New York wouldn’t think of it. But why won’t they think of it? Is it because of the resistance of the groups that don’t like surveillance, or is it because of the cost of the inevitable follow-up that is needed? I think it is a combination of both, and I think both of those factors ought to be thrown away. But they cannot be thrown away one at a time. And I don’t like either one of them because I think everybody who is HIV-infected should be under a doctor's’ care, and there is some State |Iresponsibility to ensure that that happens. I am very frustrated by this issue of pregnant women, and I want to just say something in response to your surveillance question about that. You have a number of factors in a place like a large Northeastern city where one percent of the pregnant ah MILLER REPORTING CO., INC. 507 C Street, N.E Washington, DC 20002 (202) 546-6666 154 women who are delivering are infected--one percent of tens of thousands of pregnant women every year. Any other infectious disease, there would be mandatory reporting and mandatory testing in those populations--I mean any disease, any disease at all, even noninfectious disease--because it would be perceived that a greatly underserved population of reproduc- tive age women would be tested. I mean, why wouldn’t you? You have a chance to serve one percent of the people, to actually serve those people? Where do the demands for testing come from? They come from the surgical units, the invasive procedure people, who are scared to death because they have to care for these people and they are often bathed in blood in the operating room, and they come from the pediatricians, who are frustrated because they don’t know whether the baby who comes into the emergency room with sniffles might really have pneumocystis pneumonia because they don’t know the test results of the baby, because the mother was never tested and the baby was never tested. So the pediatricians are saying we want to man- datorily test all the women, and the obstetricians are saying we want to mandatorily test all the women. And then a woman ah 155 who I think testified before your Commission got up and said, |I"How come nobody cares about me until my baby gets sick or until my obstetrician is at risk?" Where is the women in this situation? Well, a mandatory reporting system makes all the public health sense in the world. And people will look at us and ask why aren't we doing this. We are not doing it because we can’t deliver the mail, and we can’t deal with the protests of the risk igroups. But we’ve got to deliver the mail and deal with the protests at once. That is hard--maybe won’t be done. But it should be. CHAIRMAN OSBORN: An extremely brief comment or question from Jim Allen. COMMISSIONER JAMES ALLEN: Dr. Joseph, I wanted to thank you for your testimony, and I look forward to getting a copy of the report and having a chance to read it. I wonder if you could just briefly, however, expand on your comments on the role of the public health laboratory in assessing immune function. You made reference to the fact that many of the laboratories are beginning to acquire flow cytometry equipment, and I wonder if you could briefly expand on the role in training, in working in quality assurance with MILLER REPORTING CO , INC. 507 C Street, NE. Washington, DC 20002 (202) 346-6666 ah MILLER REPORTING CO, INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 156 hospital laboratories and other laboratories in the State, and also in providing direct service, how quickly you see this being geared up because obviously the need is now--that is one part of providing the care that Dr. Curran was referring to--and what resources are needed, and how do you see the Commission’s role in trying to assure that. DR. JOSEPH: First of all, in a recent survey that our association conducted, we have now already eight States that have acquired the instrument to do flow cytometry, State public health laboratories. There are four right now-~-~half of those--that are actually providing services. And that is a decision that has been made in the State health department that when the individuals are in the counseling and testing sites that they should at least offer them the possibility of monitoring and intervention. So that is occurring, and I think that is going to occur rather quickly. As far as the other issue of quality assurance and training, two important concerns, ones that we are dealing with now in the consensus conference, and we have had a preliminary report on the concerns about the CD4 cell counts and the great variability and the kind of standardiza- tion that is going to be required and the quality control. MILLER REPORTING CO., INC, 507 C Sueet, NE Washington, DC 20002 {202) 546-6666 ! 157 That, we hope to finalize at the next consensus meeting that we have. But training is an important issue, and CDC has been providing some training. They have initiated courses in flow cytometry. But we also have courses or special training to provide for individuals within certain States. It is something that our national laboratory training network has recommended that the training be developed and be provided. So we feel that training can be gotten for these individuals rather quickly, but the quality assurance part is bur major concern. As far as the funding for this service--and that is the big concern for the laboratory portion of the funding--we looked at that, and to provide that service I think that the funding--our estimate was about $15 million to get that program underway and the support that it needs and not to cut pany funding or transfer funding from the existing counseling and testing, or seroprevalence. So it is a significant amount, but when you divide it among the 50 States it is not a major amount. So that is the major, primary concern, but I do think it is going to pccur rather quickly. some States are doing testing now and monitoring, ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 158 and what happens is once they find that the individual has a count that is below the 500 level they can be referred--that is in the State clinics--to the private sector for the follow-up. And apparently in one of the States, they would then get coverage once they have established that immune deficiency, by third-party payers in that system. CHAIRMAN OSBORN: Thank you very much. We appreciate the rich input from the panel. We have one more panel before lunch, and I would like to invite Dan Bross from the AIDS Action Council and some local talent, Larry Kessler from the AIDS Action Committee of Massachusetts, to join us. And not only is there no such thing as a free lunch; there is no such thing as an early lunch. We are going to continue until we get a chance to hear from you both. Dan Bross. . MR. BROSS: Good morning. My name is Dan Bross, and I am the incoming Executive Director of the AIDS Action Council. I want to take this opportunity to publicly acknowledge a colleague, someone whom I had the opportunity to work with briefly over the past two weeks during a ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC. 20002 (202) 546-6666 159 transition period, and I know that you as members of the Commission have had an opportunity to work with, and that is my predecessor, Gene McGuire, who is joining me this morning. CHAIRMAN OSBORN: Thank you for doing that. I was going to try and slip it in later, but that is much nicer. MR. BROSS: Thank you. I am honored to be invited to this important public health hearing. Your invitation to AIDS Action, the national representative of the community-based organizations responding to the epidemic of HIV, shows your recognition of the importance of these groups in the public health response. Today I will discuss the accomplishments of the community-based response in the past and our challenges for the future. During the summer and fall of 1981, small groups of gay men in New York, San Francisco and Los Angeles began to meet informally to discuss a mysterious disease attacking their friends and lovers in ever-increasing numbers. These meetings spawned the community-based response to AIDS. These first groups evolved into the Gay Men’s Health Crisis in New York City; the San Francisco AIDS Foundation and the AIDS Project Los Angeles. ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 160 It is not an exaggeration to say that these groups were present in the gay community when no one else was--not the health professions, not the social service organizations, not the public health agencies. Out of these initial efforts, a system of preven- tion, care and advocacy has evolved that stands as a model for effective integration of prevention and care, partnership between voluntary, public and private efforts, active participation by people most directly affected, and community- based programming. Today there are over 500 community-based organiza- tions in all different populations affected by this epidemic, and our partnership with existing public health, medical, social service and advocacy networks has expanded significant- ly. It is my privilege to speak on behalf of these organizations of the knowledge, experience, effectiveness and support that we have gained over the last decade which have earned us a continuing central role in the public health response to this disease. The core of the community-based response is care. We have been comforting the sick for nearly a decade. At ah MILLER REPORTING CO., INC. $07 C Sureet, N.E. Washington, DC. 20002 (202) 546-6666 161 first we were their friends, then friends of friends, and now an expanding corps of trained volunteers. We continue to do our best to counsel, care for and feed those in need. We have experienced directly the gaping holes in insurance for those who lose their jobs or never had jobs; the gaps in coverage for home care and support services, and the missing links between services. For nearly ten years we have attempted to fill these voids with services provided by volunteers. The humanitarian contribution of our efforts is obvious. Perhaps less clear is our enormous economic contribution. By using networks of volunteers to provide home care, ancillary and support services, case management and client advocacy, we have prevented costly hospitalizations and augmented the lefforts of the already overtaxed health and social service systems. In the process, we have re-taught America something it has known but continues to ignore: Care at home and in communities is what most people who are sick want and is often the least costly. As time went on, and the numbers grew so ominously, the community-based organizations brought their information and knowledge to the traditional health agencies to forge ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC. 20002 (202) 546-6666 i. _— oC if) 162 alliances or to force recognition and Support. The voluntary- based model of services by individual agencies was expanded to encompass a coordinated effort with many different public and private entities supported by foundation and U.S. Public Health Service funds. Currently, in many jurisdictions, community-based prganizations operate with a mix of volunteer support, private donations and public funding. Evaluations of these Fommunity-based models of care have shown a substantially lower hospital and other acute care use. However, it is time to press forward for further institutionalization of these models of care and for more pubstantial and reliable Federal funding of these efforts. fhe pattern of moving from entirely voluntary public/private rOllaborations has characterized many public health efforts historically. Examples include immunization campaigns, infant nutrition programs, and home health care. For HIV disease, the urgency of this transition is jompounded by increasing caseloads in populations with yxtremely varied and complex health and social service needs and extremely limited resources. The Ryan White Comprehensive Care Resource Emergen- ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, D.C 20002 (202) 546-6666 163 cy Act, or the CARE Bill, which was signed into law this August formalizes this partnership between people living with HIV, the community-based response, and traditional health and social service care providers. But the promise of this partnership degenerates into a cruel hoax without the allocation of funding. If the full Congress were to reaffirm the decision of the Senate Appropriations subcommittee to appropriate no new dollars to the implementation of care, we are left with a hollow promise. Tt is not an option to turn away from Federal support for this model of care and the community-based providers of that care, and it is not an option for public health agencies, specifically the Department of Health and Human Services, to maintain fictional distinctions between designing programs and assuring access. And it is not an option for our national public health leadership to fail to support funding for care or to fail to provide access to the innovations in treatment they themselves are discovering. I only wish Dr. Curran’s vision for access which was just described was shared by the Administration. As significant as our contribution to cost-effective and human care has been, so too has our contribution to ah MILLER REPORTING CO., INC. 507 C Street, NE. Washington, DC 20002 (202) 546-6666 164 prevention. Even before the epidemiology was entirely understood and well before public health leaders began to discuss a prevention agenda, gay organizations had formed effective safer sex messages. Formed within affected communities and using the media, proven behavioral interpreta- tion methodologies and peer support, these prevention campaigns have enjoyed remarkable success despite the absence of any public health guidance. They have also served as the model for evolving prevention strategies at both the local and the national levels. The early efforts of the gay community worked because they were explicit, targeted and built on sound behavioral principles, ongoing and conducted by the community with whom individuals at risk identified. Application of these principles has informed promising community-based prevention programs in communities of color, among intravenous drug users and other substance abusers, and addressing the particular needs of women and adolescents. The obstacles to effective prevention efforts are Significant, however. Affected populations lack resources critical to making difficult behavioral changes. Compounding the complexity of changing sexual behavior is the dysfunction ah MILLER REPORTING CO., INC, $07 C Street, NE. Washington, D.C. 20002 (202) 546-6666 sie, Soll, 5h. v 165 that goes with chemical dependence, another disease of epidemic proportions in this country. But perhaps most formidable of all the obstacles is pur continuing lack of a national commitment to a prevention agenda. As public health authorities have equivocated on national prevention leadership, prevention programs have been forced to divert resources to circumvent restrictive public health law and funding. The pool of infection is too big, the resources too tew, and behavior changes too difficult for this costly void in leadership to continue. At every level, from the President #O every public health officer, we need advocacy for targeted, #ffective prevention efforts, including support for ongoing behavior change, for substance abuse treatment on demand, and for distribution of materials and information to Support safer sex and safer injection. We must be able to provide a yariety of chemical dependence treatment options to anyone who wants them. We must be able to provide condoms to anyone Who is sexually active in any setting. And we must provide terile syringes and bleach to those who inject. To provide the leadership we call for, public health officials and political leaders must confront histori- ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 346-6666 166 cal tabus against frank discussion about sex. They must confront the moralization that prevents approaching addiction as a disease. They must incorporate the needs of chemical- dependent citizens into a comprehensive public health agenda if we are ever to intervene in the cycle of substance abuse and infection. In dealing with these twin epidemics, the public health leadership has for too long allowed politics to interfere with public health necessities. The intimate and difficult behavior change required to prevent transmission of this disease calls for attention to the needs of at-risk communities, including individual needs for ongoing support to maintain change. Clearly, community-based organizations will continue to be the most appropriate and effective providers of ongoing prevention isupport. But our efforts require the support of national political leaders, passage of rational laws, and of course, adequate funding. The emergence of effective early prophylaxis has linked secondary prevention and treatment issues in HIV antibody testing and counseling. Many community-based organizations have been active in this area, also, especially ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, D.C 20002 (202) 546-6666 167 in the provision of alternative test sites. As we move into the era of effective medical interventions, we must struggle to remember the importance of the testing process not just for diagnosis but also as an opportunity for behavior identification, change and support. We are concerned that testing never become separated from the supportive counseling process. We are especially persuaded that proposals like the home test kit recommendation mot be approved. We are also persuaded that resource allocation questions in the face of constrained funds must be very carefully considered as decisions about HIV prevention are made. In the course of the last year, in the light of real options for early intervention, the focus on partner notification has increased considerably. We strongly feel that the historical changes regarding useful and cost- effective partner notification in the context of prevention strategies should continue to receive critical support. I understand that earlier this morning the Commis- sion had some testimony regarding the reporting of names, and I would like to take this opportunity to discuss with the Commission AIDS Action’s view. ah MILLER REPORTING CO, INC, 507 C Strect, N.E Washington, DC 20002 (202) 346-6666 168 AIDS Action-- COMMISSIONER ROGERS: Mr. Bross, bear in mind you are running to the end of your time. MR. BROSS: All right. I think this is an important comment to get in, and I would like to conclude with these comments. AIDS Action, and in fact many of the agencies that you have heard from today, have historically opposed such a policy of names reporting, particularly when it has emerged as a legislative mandate. AIDS Action and many others continue to oppose the required reporting of names of people who are positive. We believe that rationale which has been used to facilitate partner notification is not valid. If in fact a locality has determined that the type of targeted partner notification that Dr. Foster referred to is an appropriate and effective prevention modality for that jurisdiction, then their need is for the names of the contacts, not for the patient. A system that focuses on the contacts will not have the negative impact on testing that a system of indexing names reporting has already proven to have. In addition I would dispute the earlier contention ah :WLLER REPORTING CO., INC. 507 C Street, N.E Washington. DC 20002 (202) 346-6666 169 regarding the trust that individuals have in their local public health departments. It would greatly concern me that most at-risk individuals would fear compromising the care and lbenefits they otherwise depend on if they do not cooperate with the name reporting requirement. One has to wonder if truly disenfranchised people would come and be tested voluntarily. Finally, I am very supportive of the challenge Don Goldman offered regarding the military analogy where there is assured access to care and regarding the wonderful, yet clearly not attained, universal access vision that Dr. Curran suggests creates a rationale for names reporting. The truth of the matter is that if health care were a right, and people truly had meaningful access, we would never need their names, because the access to necessary intervention and monitoring would already be in place. I appreciate the opportunity to appear before the Commission, and I apologize if my comments ran beyond my allotted time. CHAIRMAN OSBORN: Thank you. Larry. COMMISSIONER KESSLER: Well, good afternoon from ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 170 this side of the table. I appreciate the opportunity to sit here on this side and make some observations and share with you some of my perspectives about community-based organizations and their relationship to public health in combating this epidemic. When the staff asked me if I was interested at first I said no, but then I realized that the reason I was actually appointed to the Commission was to bring a CBO perspective. I want to share a little bit of that today, and hopefully this will not be too repetitive--but if it is, I apologize in advance. We have heard a lot as we have traveled in the past year, and even today, about four basic principles in terms of combatting this epidemic: partnership, leadership, collabora- tion, and investment. Let me remind ourselves here that the former President’s Commission on AIDS quite clearly stated, loudly and very forcibly, that without the AIDS service organizations or the community-based response that occurred in the first eight years of this epidemic, we would be nowhere. I think that even since 1988 when that statement was clearly elucida- ted in the report, we still find ourselves in the same ah. MILLER REPORTING CO., INC. 507 C Streer, NE. Washington, DC 20002 (202) 546-6666 171 Situation in many localities across this country. Dr. Roper this morning indicated and upheld the value of partnership and linked that to motivating the community to meet the challenge. That partnership must include not only public health, but the business and the cor- porate community as well. That has not been stated so far in this series of testimony, but I want to zip that in there because we need their help. Obviously, in a period of shrinking resources, that is going to be critical. But it is also critical to remember {that the corporate community does not see their responsibility as taking on public health, and they are unlikely to fund the government to do that; but they are likely, I think, if there is a partnership that exists between government and local groups, to find a way to channel that money through the local groups for efforts that government and the local CBOs do together and ways that they work together. The leadership issue, Dan has clearly elucidated. But the important value here is that the CBOs have been able to speak, clearly and frankly, at times when public health has not been able to do it, for political reasons, for reasons that I alluded to earlier in terms of political ah MILLER REPORTING CO., INC. 507 C Street, NE Washngton, DC 20002 (202) 546-6666 172 campaigns or aspirations of particular candidates or fear of the public, or simply misinformation that the pollsters had, who informed those in leadership roles that this is not an issue you want to talk about, or you are going to lose. My experience has been that the American public is desperate for leadership; that they are desperate to know that someone is in charge of this epidemic. I think as Commissioners, we have heard that as well as we have travelled across the country. Collaboration is particularly important when we are talking about developing public policy, budgets, initiatives, and in the very planning process itself. If we are ever going to step ahead with credibility, with our hands joined, it is going to be by having all the partners at the table from the very earliest stage, not at the end of the process, not when some of the groups protest, and not when someone raises the question in the press, but from the very, very beginning, no matter what level we are talking about here. Investment is something we have not touched on directly today but we have in the past. Volunteer staff--and I stress the term "Staff" here. There are over 100,000 volunteers working with CBOs in this country. We need to ah MILLER REPORTING CO., INC. 307 C Street, NE Washington, DC. 20002 (202) 546-6666 173 view them as auxiliary or as really supportive staff members because they are doing the work of public health in many cases; they are doing the work of government; they are often doing the work of the churches; they are doing the work oftentimes of the city councils and county commissioners and 7SO On. But we need to train them and keep them trained. We need to look at CBOs and help them with their overhead, because they are not going to survive, and again, in this growing epidemic of shrinking resources, they too are endangered. If we lose that, the efforts will be set back by decades. Let’s look at some of the future issues that I think we are going to have to work together on. Obviously, one of the big issues here is poverty. Poverty isn’t going away any faster than the epidemic of AIDS is going away. We have a recession in this country, and it is growing in certain sections of the country to a depression level, which is going to make it easier for the public policy people to rob resources from AIDS because AIDS is the "new kid on the block", and we all know that the new kid on the block is always the first one to have the rug pulled out from under- ah MILLER REPORTING CO , INC. $07 C Sueet, NE Washington, DC. 20002 (202) 546-6666 174 neath him. Crime, other social problems are interfacing with this epidemic and making it more difficult because it often bumps AIDS down on the list of priorities that a community might need to respond to. Partner notification is something that we are probably going to get into in the next day. It is not going to go away as an issue, but I think as we look at that and discuss and debate the context of whether it be voluntary, whether it be mandatory, how it is structured, all the players have got to be at the table to educate one another about its benefits and its risks. Early intervention, access to care, insurance, health care reform--not just health care bandaids--we really need to look at radical reform for the whole health care industry, how care is delivered and to whom, if we are going to make any strides. Obviously, medical research, the drug trials, the treatment options, the whole issue of underground trials and underground drugs are part of the agenda that CBOs have been dealing with. They have been dealing with those issues with people with AIDS, and sometimes they are the only parties ah MILLER REPORTING CO., INC. 507 C Street, N E Washington, DC 20002 {202) 546-6666 175 dealing with them. All those issues have to be on the table for public health people as well and be involved in the dialogue. Vaccine trials. In the next decade it is going to be a very complicated issue as we begin to experiment or test vaccines. Without the players there, we will lose very, very Valuable time. Drug treatment, needle exchange, siting problems, the NIMBY syndrome, are all the kinds of issues that are going to continue to haunt us. It is safe to say that public health will have a harder time of it without the active support and participation of the CBOs and ASOs, AIDS Service Organizations. It is also safe to say that public health might find this job impossible if these groups resist, ignore or sabotage their efforts. The mistrust of government is obvious, and we see this in the electoral process. If government officials, elected officials, continue to muddle in the public health agenda, then I think we are going to see the same mistrust of public health because of their association with the lack of leadership on the government and elected official level. Since the Commission probably won’t be coming to Boston, I just wanted to give you some examples of when ah MILLER REPORTING CO., INC. $07 C Sucet, NE Washington, D.C 20002 (202} 546-6666 176 partnership does work and how it can work. I have brought you some aides which I have placed in front of your micro- phones about an hour ago, to give you an example of what I mean by partnership, collaboration and investment and where it works well to spell leadership. Leadership does motivate, it does educate, it does inspire, and it conveys cooperation. And when we have that cooperation, we create a climate in which the epidemic can be addressed. My agency alone, which is one of almost 600 AIDS service organizations in the country, out of its commitment to raise the consciousness in the community, has also raised and given away $2,285,000 in the last five years to 59 other community-based organizations. Some of those groups are groups that were also funded by the Department of Public Health, by Health in Hospitals; some were also funded by NIMH, HRSA, NIAID, and so on. They included, if you will look at that list, health centers, clinics, gay and lesbian programs that serve people with HIV, minority agencies, drug treatment, housing initia- tives, and so on. And in several cases, to get government to move, those people who were setting the budgets, we funded ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 177 government agencies and publicly awarded them for their planning efforts, and then embarrassed those in charge of the purse strings to get on the case and support those programs in subsequent years. That is a rare approach. That does not happen very often because most CBOs have not been able to do that. We did it as an act of advocacy and as an act of participation and partnership as well. The education that has happened because of CBOs, lithe hundreds and thousands, if not millions, of calls that have been answered by hot-line volunteers, the speakers bureaus--my own speakers bureau at my agency just in the last six months has addressed 15,000 people in the Commonwealth of Massachusetts; next month we are going to train an additional 40 volunteers so that we can double that in the years ahead. And I’m not talking about going out and telling people that AIDS is a problem. Our volunteers are out there talking about AIDS in the most frank, explicit and the most direct way, and you can see from the brochure the appreciation of the community when we can tell them what AIDS is really about and what it is not about. Advocacy in partnership with public health is so ah MILLER REPORTING CO., INC. $07 C Sueet, NE Washington, DC. 20002 (202) 346-6666 178 important. We were particularly proud in Massachusetts because before the test for HIV even became available, we were all at the table, strategizing about what we would do when it was licensed, how the alternative testing sites would be set up, and counseling from the very beginning was always a part of that. Subsequently, many States adopted some of the same models and looked at ours and felt good. Recently, one of the large drug manufacturers proposed the bill in our legislature that would have limited the access to information about drug protocols, severely limiting them. Our Department of Public Health, ACTUP, AIDS service organizations joined hands to beat that bill back on behalf of the clients, on behalf of people with AIDS, and we reached an agreement with the drug company that met some of their needs and protected their rights to privacy, but really protected the patient as well. Recently, at our provisions conference--which June Osborn, gratefully, addressed, Jonathan Mahon [phonetic] also addressed this complication--nearly 600 AIDS service provi- ders, public health people and so on, who came together in Boston to learn how to work together even more and to share resources, share technical assistance and so on. But Mahon ah MILLER REPORTING CO., INC. 507 C Street, NE. Washington, D.C 20002 (202) 546-6666 179 reminded us of how we need to act locally and think globally. I am struck by the reluctance of the American public health system sometimes to look at needle schemes in the rest of the world, to understand the restructuring of the insurance and the health care provision that is much more successful in terms of access issues in Sweden, Switzerland, the United Kingdom and Canada. We’ve got to stop saying it won’t work here because it is a different culture. I think one of the reasons we need to stop doing that is that other countries have looked at the United States and have adopted things that have worked here and are now having them work well there, particularly the community-based response. Africa has adopted programs that we started in this country in terms of the buddy system that are working well--the same model, the same sort of training, the same philosophy, the same mission. Fundraising, safe sex workshops, and so on that have been proven successful here are now working in Asia, in Europe and in Latin America. Yet we are quick to export these models and not import some of the models in those other countries that may work well here as well. We need a dose of humility and reality. ah MILLER REPORTING CO., INC. $07 C Steet, NE. Washington, DC 20002 (202) 546-6666 180 Larry Kramer has reminded us that we have lost the war. I’m not sure we have lost the war, but we are going to lose the war if we don’t learn more about the kind of collaboration and partnership that needs to exist. We need to understand the challenge, know when to call for new roles--public policy initiatives, legislation, funding schemes are all part of this kind of climate that we need to create. We must all be about caring for the present while we go about protecting the future. Thank you. CHAIRMAN OSBORN: Thank you very much-- COMMISSIONER KESSLER: Actually, I forget a very important thing. This is a campaign that took us eight years. You may ask why did it take eight years--and this is not the whole campaign--but this “Use One" campaign is getting government, public health and the AIDS service providers working together to promote the use of condoms, distribute them, talk frankly about safe sex, about condom use--that includes how to use them, how to lubricate them, how to take them off, et cetera, how to put them on. This campaign will ah MILLER REPORTING CO., INC, $07 C Sreet, NE Washington, DC 20002 (202) 546-6666 181 now appear through the Commonwealth, on buses, on billboards, on subways; there are posters that will go in every health center; there are posters that are available at the schools and colleges; there is a drive to get bars and restaurants and theaters and other places to install condom machines. There is a whole coordinated approach that will take months to implement. And this is the first concrete piece that we now have in the campaign. But the importance here I think is it is not just the AIDS service organizations; it is the government. It is the Department of Human Services, and it is public health, saying in a loud voice and together: We care about you. We want to protect your health. We want you to know about STDs, we want you to know about AIDS, we want you to know about prevention of all of the above. CHAIRMAN OSBORN: Turn it around and show the audience as well. (Applause. ] CHAIRMAN OSBORN: Charlie? COMMISSIONER KONIGSBERG: I’d like to pick up on a theme of Larry Kessler’s about collaboration and the role of community-based organizations in relation to official public ah MILLER REPORTING CO., INC. 507 C Setcer, NE. Washington, DC 20002 (202) 546-6666 182 health agencies. We touched a little bit this morning, Dr. Remington and others, about the problems in infrastructure of many health departments, and I guess my perspective now, having been in middle America, literally, for the last two years has shown me not only do we have a lot of development work in the public health infrastructure, but also in the community-based infrastructure--and Larry, you and I have had this conversa- tion before, and I would address this to the AIDS Action Council--that there is a need to export creatively and responsibly some of that knowledge about how to organize organizations in other communities. And that is I think just kind of a plea that I would put out there. To that point, when Kansas set forth our new Kansas Responds to AIDS plan, community mobilization is part of that plan, and we actually had to set out to try to create community-based groups that could be effective. And I think the emphasis is on effectiveness and credibility. It applies just as much to the community-based groups as it does to the public health structure. And I guess my goal in Kansas, just speaking kind of provincially a little bit, is that if we get the advocacy and the interest in AIDS and HIV to the point ah MILLER REPORTING CO., INC. 507 C Street, NE. Washington, DC. 20002 (202) 546-6666 183 that we have in children’s health issues through the Childre- in’s Coalition in Kansas, we will have achieved something. And if you look at the difference in the funding, there is definitely an epidemiologic association, if not causality. COMMISSIONER KESSLER: I think that’s a good point, Charles, and I think it is again the investment issue that so many of these 600 groups in the country are struggling. They are struggling to just find a storefront to operate from or to install their phones and provide limited levels of sort of ad hoc case management and so on. But government has the technical assistance, often in its structure; it has the ability to help with training and so on. And they have a right to ask for accountability. But the groups need help, and they can help tremendously. Also, on the flip side, there are times when those groups may not agree with the recommendations of government, and that is okay. I think as Dr. Myers in Columbus has found in his scenario there, too, it won't be 100 percent agreement across-the-board, but talking across the table and educating one another about the particular perspectives might mean a model in which you can get 100 percent agreement that works well. ah MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 184 I don’t think anybody has a corner on wisdom regarding this epidemic and how to deliver the goods. CHAIRMAN OSBORN: Dr. Lanier--this gives me a chance to welcome you, as Deputy Assistant Secretary of Health for Defense. DR. LANIER: Thank you very much. Just briefly to Mr. Kessler, I was struck by your focus on voluntarism and the whole issue of collaboration, and I have two brief questions. How is that kind of a program financed, and what kind of cooperation do you get from the local industry up in Boston? COMMISSIONER KESSLER: Well, in our particular situation, we have 1,700 volunteers in my agency, worth nearly $5 million. That is what we estimate it would cost to replace them. There are a variety of skilled and unskilled workers--by that I mean coming from various professional levels in the community, but hopefully they all get some skills in terms of what they are doing once they enter our volunteer system. Funding for that has come in large part from our State--that is, the coordination of those volunteers and the ah MILLER REPORTING CO, INC 507 C Street, N.E. Washington, DC 20002 (202) 546-6666 185 training. Some of the funding in small degree has come from business, particularly those volunteers who work in the workplace programs that we offer to businesses and corpora- tions. But it is an investment that has paid off, because I also see those 1,700 volunteers as health educators, because when they go through our training programs they know an awful lot about AIDS and AIDS prevention; they know a lot about the resources in the community, not only the resources that we have in AIDS Action, but the other 100 agencies throughout the State that are providing resources. They are all sort of in their Roladex as well. So it is an important component of pulling together sort of a safety net, weaving a network of information. CHAIRMAN OSBORN: Harlon? COMMISSIONER DALTON: A quick question for Mr. Bross. There was a line in your testimony that I think either went by much too quickly, or it was a little cryptic, and I wonder if you could just tease it out a bit. You made reference to the Department of Health and Human Services’ false distinction--"false" may not have been the word you used--between designing programs and providing ah MILLER REPORTING CO., INC. 507 C Street, NE. Washington, DC 20002 (202) 546-6666 186 access, I did not know precisely to what you were referring. MR. BROSS: One of the things that I was trying to get across in my testimony is the whole concept of the lack of access of care by a number of communities in our popula- tion. I think it goes to the point of collection of names. I think the issue that the Commission needs to focus on, or that we in AIDS Action are focusing on, is the whole concept of access to care and really providing that care to people in Ineed of the care and of the services. I think oftentimes we get caught up in rhetorical arguments about, okay, we all agree with providing that care, but don’t go the step of really doing something to provide the care to people in need. Does that provide any clarification? COMMISSIONER DALTON: Yes, thank you. CHAIRMAN OSBORN: Well, let me thank you both for a very important input to this morning’s rather rich testimony. I think we will now adjourn. Since it is so late, we won’t have such a long time waiting to get lunch, so we should return at 2:30 for Commission business. Thank you. We are in recess. (Whereupon, at 1:15 p.m., a lunch recess was taken. ] ah MILLER REPORTING CO., INC. 907 C Street, NE Washington, DC 20002 (202) 546-6666 187 AFTERNOON SESSION [3:00 p.m. ] MS. BYRNES: For the rest of the afternoon, I would propose the following agenda: A presentation from myself on lthe organization of the staff at the National Commission on AIDS; our proposed work plan for the coming year; some brief discussion, perhaps to be put off until tomorrow, for follow- up on the current legislative/appropriations situation for the Ryan White Comprehensive Bill, as well as the funding for the Commission next year; a little bit of administrative catchup in terms of vouchers and signing and what the process will be for the coming year. And then, Dr. Konigsberg had suggested that might try--and I actually think we would have time this afternoon to do this, and Diane has requested that we think about doing this in all of our meetings--but try to set aside I’m going to suggest half an hour, and we may need a little bit longer, but some time to just talk with each other about issues that we heard this morning, either expanding on some of those things, summarizing them, or raising some questions that we may have that some of the people around the table can answer or debate, depending upon what the issue calls for. ah MILLER REPORTING CO , INC. $07 C Street, NE. Washington, DC = 20002 (202) 546-6666 188 So I will try to do certainly what we have had as Commission staff business in terms of presentation and going over what we put together in half an hour. You may have more questions and obviously more input to the plan, that would take us a little bit longer, but if we could try to watch the clock and set aside at least half an hour to talk a little bit about the issues we heard this morning, I think that would catch us up at least fora the agenda items that I have today. Is there anything else that anyone else would like to put on the list? CHAIRMAN OSBORN: I wasn't sure earlier when I said hello to Dr. Lanier that everybody knew who you were; so welcome, as Principal Deputy Assistant Secretary for Defense. You are sitting in today for Dr. Mendez, and we are very glad to have you with us. DR. LANIER: Thank you. MS. BYRNES: And while we are doing introductions, I know that some of you have met frank, but I would like to formally introduce Frank Arcari. He is on detail from the Department of Defense and serving as the Commission’s administrative officer for the coming year and really has ah MILLER REPORTING CO., INC. 907 C Street, NE Washington, D.C 20002 (202) 346-6666 189 been a big help thus far in getting Interim Reports 1, 2, and 3 as well as the annual report, and I will talk about that during this afternoon, to the Government Printing Office and reported back, as well as looking at how we are processing our travel, reimbursements, and much of the management/busi- ness end of the office. The first item on the agenda, however, is not a formal one. I wanted for all of you to know, those of you who do not, that Don Des Jarlais is now the proud father of a seven-pound, 15-ounce baby boy. He will be joining us tomorrow. He will be a little bit late. He is testifying before a hearing that Congressman Weiss is having in the morning on drug addiction and HIV infection, so they certainly have the expert starting off the hearing tomorrow morning, and he will be along shortly thereafter. But I did want to make sure you all knew that. COMMISSIONER ROGERS: I just want to interject on that that you may remember that Don Des Jarlais copped out on us about the tunnel as we were headed back and forth across the Hudson River to the prisons before. That was for his LaMaz Class, so I guess it turned out all right. MS. BYRNES: Well, the reason he is not here is ah MILLER REPOATING CO., INC. 507 C Street, NE. Washington, DC 20002 (202) 546-6666 190 that he is not taking overnight trips for a certain period of time while the baby is an infant. So he will be with us tomorrow, but he will be making those alternate plans for the next coming months. What we did as a Commission staff after the July exercise on the part of the Commission members with Maryann, identifying some of the priorities and then trying to prioritize some of the priorities in our meetings thereafter- -we got together as a staff to look at putting together a work plan to implement those priorities that you had iden- tified, and in the process of putting together the work plan we also began to look at how we organized work in the Commission office and tried to look at the topics and the activities that we would be planning for the coming year and try to organize ourselves in a way that looked at us by function, what functions did we have at the Commission staff. We identified essentially three clearly-defined functions, one being broadly defined in the program area, those things that we do that look at the issues that were identified on that priority list of 17 issues. Then we know we do media, and that is certainly what Tom’s expertise brings to the Commission staff. Carlton is someone who MILLER REPORTING CO., INC. 507 C Sureet, NE. Washington, D.C 20002 (202) 346-6666 191 clearly has expertise and experience in the area of Congres- sional relations. And there was discussion at our meeting when we were organizing the office that there was lots of interest on the part of the staff to more fully develop a position around outreach; how are we on a full-time basis trying to share with all of the different constituencies, organizations, people, if you will, who are interested in what the Commission is doing and who we should be interested in finding out what their input is, what their observations are, and hopefully getting them to some degree invested in some of the issues and outcomes the Commission is interested in following up or organizing our work. Patricia Sosa had a clear interest in trying to look at how we might better inform communities and organiza- tions about what we are doing and also get back from them their input about what they would like to see the Commission do, how we might go about looking at some of the issues we have identified and then just basically an information exchange of what is out there that we need to have and how might we better advertise, if you will, and work as a community in some of the coalitions that we heard talked about this morning, with other organizations and people who ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 192 are busy about looking at responses and answers to the epidemic. We have considered those three functions--media, Congressional relations and outreach--and we have now organized into a function that we would call "external affairs". Some of these titles are a little bit funny when you realize that we are talking about all of ten people, usually, give or take one or two, depending on who is coming and who is going. But again, it was designed not to divide or fragment the limited numbers of staff, but to better identify what the individual functions are and how they relate to each other--what is the outreach component to a hearing or a site visit; what Congressional relations should we be sure we have touched base with when we visit different places or are jinterested in different pieces of legislation or policy- moving. Clearly, again, I think the other one we are most familiar with is media relations. But we have categorized that function as external affairs. And then we were lucky enough to be able to detail Frank from the Department of Defense to really help us organize the administration--the day-to-day paying the bills, ah MILLER REPORTING Co., INC $07 C Street, NE Washington. DC 20002 (202) 546-6666 193 looking at the budget keeping the process going, assistance at the staff level as well as at the Commission level. I must say that I am particularly pleased at that because it was taking up a lot of all of our time. I can speak personally that I felt it was taking up more of my program time than I would have preferred last year, and I think if you talk to the other staff members, they would feel the same--that everybody was doing everything from soup to nuts. And it was our thought that perhaps bringing someone on who could really organize the administration activities as lwell as looking at our skills, expertise and strengths and organizing those, that we would then be able to really move forward with the plans that we developed, knowing who is responsible for what and how we would organize the work in the office. So before I pass out the plan, I just wanted to share some of that--I was going to call it “reorganization", but in my mind it is an “organization” because we were not organized by function in the past year. There were ten of us working real hard at trying to get whatever job needed to get done at the time, again, relying on the strengths and expertise and experience of individual people as the issues ah MILLER REPORTING CO , INC. $07 C Sreet, NE Washington, DC 20002 (202) 546-6666 194 came up. You will see there obviously I have not changed my mind and would still love to continue as the Executive Director. Jane Silver will be coordinating the program activities; Tom, coordinating those three functions under external affairs; and then Frank essentially responsible for the administrative activities. Within the program area--and these are not hard and fast, but again designed for us to be able to know who is doing what and how we might better organize ourselves--Jeff |Stryker, who now is our West Coast representative on the Commission staff, as opposed to the Ann Arbor office, has agreed to really serve the function of monitoring the research activities around AIDS. That was one of the issues on the list of 17, but it wasn’t identified as something that we needed to do again in a full Commission hearing. What was identified was the need for ongoing monitoring and reporting back and interaction with the Commission on those issues. So Jeff will be looking at for instance the Institute of Medicine Report that Robin and Dr. Theyer [phonetic] talked to us about in terms of coming out probably some time in October; does the NIH have new studies or ah MILLER REPORTING CO., INC. $07 C Sereer, NE Washington, DC 20002 (202) 546-6666 195 findings coming out in terms of the research ongoing there. June and I and Larry and a number of other people were at the Institute of Medicine’s Roundtable on Vaccine Development. We don't have a structure for this year. Clearly, we will present something, and I can show you on the work plan there is a target date to have what could look like a written document summarizing research activities over the past year, but Jeff has also agreed if something comes out particularly noteworthy--if there is a review of some of the NIH programs; is there a new development of a particular drug; have we started a different phase of a vaccine trial--that he will share in a written form some of that information with the Commission and then at our Commission meeting if there are questions or a desire for more specificity or follow-up, that would certainly be appropriate as well. You will see that Karen is indicated on the program division as somewhat who is essentially the point person, if you will, responsible for the Commission reports and documen- tation. That doesn’t mean that Karen Porter is going to write all of our reports and document all of our activities, but what that does mean is she is essentially the person who will coordinate those. She, along with the staff, and ah MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 196 obviously along with your ideas and goals for the coming year, will also constantly be thinking as we move along how does this fit into the final report, how might we structure the final report, what makes sense to go in, how should we put chapters together, how should we maybe not put chapters together and think about a volume one and a volume two--I don’t know. We haven’t obviously thought specifically about what that would look like. But one of the expectations for Karen’s responsibilities is to keep our eye on the ball, that what we are about in next August is a final report. And along with interim reports that we will continue to release and other documentation that may become appropriate as we look at different issues, Karen will be essentially the person responsible for coordinating those. I have spoken with Karen and with Jane, and we have spoken as a staff at some of our staff meetings. It is certainly my hope that we are going to have enough money in the coming year to hire some consultants to help us do the writing for particular topics, bring them in in the planning process, have them obviously observed, if not participate in the meeting, and then have a few different people help us with the writing. That was very time-consuming this past ah MILLER REPORTING CO., INC. $07 € Street, NE Washington, DC. 20002 (202) 546-6666 197 year. I think it paid off. I think that our reports are very, very well-received, and clearly the piece that Don and Karen worked so close on in terms of the immigration issue was very well-received, and I think we want to continue to look at a diversity of documents and reports that the Commission puts out to the public or to particular sectors that may be able to use them in different ways. But it takes a lot of time, as all of you know, to get those written, sent around to everyone, get the input and get them out. So again, we’re trying not to have everybody doing everything, and keep people working on some of the program activities and have Patricia doing the outreach, as well as other members of the staff. It certainly will be very appropriate for other members of staff to participate in certain outreach activities. It is not that Patricia will go to every meeting, and no one else goes any longer; it is that Patricia will be responsible for coordinating those ac- tivities, knowing where we are outreaching, who we might want to bring in at the staff and the Commission level, and essentially be able to provide that coordinating function for us. As I said, the administration responsibilities will ah MILLER REPORTING CO., INC. 507 C Sereet, N.E Washington, DC 20002 (202) 546-6666 198 be Frank’s, and we are hoping to expand that because Adriana I think will be moving more full-time into either the external affairs division or the program division, and we definitely need some additional people to replace Melony and to answer the phones that seem to want to ring right off the hook at obviously the worst times. I am very supportive of this. We talked about this lias a staff when we were trying to organize it, and I would say to you as executive director that I think that this will help me function better. I think it will free up some more of my time to stay in better contact with each one of you. Sometimes last year we got so busy that at the last minute we were saying, "Oops, it’s on its way," or "Did you mention this to me three weeks ago?" I think one of the things this will help me do in addition to being--as I said, there are too few of us to let anyone think they can step aside--in addition to being involved in the development and the process and the follow-up to all of these activities, I think it will also help me to keep my eye on the ball--what are we all about, what is the ‘big picture, where are we going, and is the report coming ‘together and really helping me better manage our activities ah MILLER REPORTING CO., INC $07 C Street, NE. Washington, DC. 20002 (202) 546-6666 199 as well as the staff in terms of how we were functioning last year. And I would repeat--this is not designed to separate; it is actually designed to make us a little bit more productive and a little bit more clear with each other about who is responsible for what as opposed to everybody always being responsible for everything. With that said, let me pass out two more pieces of material. This is the very detailed work plan that goes from August 1990 to July 1991. And for those of you who are like me who take a long time to digest things like that, I have brought a cheat sheet. But I wanted you to see that piece of material before I pass around the highlight sheet, because it took a fair amount of time again on the part of the staff, with some hard thinking and preparation and organizing, to think about where do we want to go, how do we want to look at those items that you identified, and who is responsible for what. Let me walk us through this. August is over, but since we were working and you were working in August 199, we put that down. I think it also helps to follow this if you look at August because we have put into the following months ah MILLER REPORTING CO, INC. $07 C Street, NE Washington, DC, 20002 (202) 546-6666 200 the follow-up that is required to the prior activities. So I thought to start with August not only that we have actually done it, but I think it helps you to see what we need to do in September and November, once an activity has happened. September, obviously, the task of the issue was to look at the public health system. We are doing that on the 17th and 18th in Washington, D.C., and Jane is essentially the point person coordinating all the program activities. In particular, Jane was the staff person who worked on this hearing, but in future you will see other names and other people who will be specifically assigned to individual tasks and individual activities. And the purpose of the hearing, understanding of public health, is listed here as what was the objective of the hearing, and why were we looking at that issue. One of the things that we did was also indicate each time we met that there would be time for Commission business. And we thought it would be helpful for us to always think about that as an activity when we get together, one because of some of the requests, if you will, on the part of Diane and Charlie and others that we really begin to talk to each other about the issues as well as some of the process ah MILLER REPORTING CO., INC. 507 C Screet, N.E Washington, D.C 20002 (202) 346-6666 201 and identification of priorities. So the time budgeted there in September for Commission business--I am the person essentially for developing the agenda, adopting a work plan, considering the working group report, which I understand we'll hear about tomorrow. But you will see that probably every column, every month that we meet, so that we get that as part of our regular thinking and planning, that when we get together to look at a particular topic, a particular issue, a particular region of the country, we also will probably want to think about setting some time aside to either conduct business of getting something taken care of or at least scheduling some time that would allow each of us to talk to each other about what the issues were that we heard and what it is the commissioners would like to do next about those issues. The working group report is ongoing. We'll geta report, from the chairman of the working group as well as I assume Jason and Jeff tomorrow, so we have listed that. That is a September activity. The working group report is being worked on, it is being developed, and it will be presented to the full Commission, but just so you have a feel for how this plan works. We have just listed each issue on there that ah MILLEA REPORTING CO., INC. $07 C Street, NE Washington, D.C. 20002 (202) 546-6666 202 represents work on the part of the commissioners and on the part of Commission staff. That explains planned financing of care, 9/90-4/91. One of the things that the program staff and I will be doing this month how do we want to begin to look at this issue of financing of care. One of the top priorities of the Commis- sion is we don’t want a lot of people coming in and telling us a lot of things we have already heard. Is there some way we might structure it to hire someone to provide a presenta- tion that looks at all of the different mix of payers and payments for services in health care with people with HIV infection and AIDS, and then do we want a working group that might work with the full Commission to struggle through what are some of the short-term/long-term considerations about financing the care issues that we hear so much about at almost all of our hearings. But that is listed because that is something we are }thinking about right now, and you may have some input this afternoon for me. But what we're trying to say is in the month of September let’s start thinking about it because this is probably a year-long topic. How can we best look at this as a group, how can we best come out with recommendations ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 203 that make sense to all of us and are implementable by the powers that be? And then we’ve listed the external affairs ac- tivities on each month because again I think it is helpful to be reminded of what Tom does other than issue a press release every time we meet; what Patricia will be doing as we look at these different issues--what outreach components are necessary around developing a strategy for financing of care; what outreach activities were necessary to make sure we touched all the basis with organizations that would be interested in the public health system and its response to the epidemic, et cetera, et cetera. I am going to go to the cheat sheet now and go through each one of these, and if you have any questions, I hope that explains at least how we put this together but probably has a little bit more detail than many of you would want to get bogged down with at this moment. Larry, you look like you have a question. COMMISSIONER KESSLER: ([Inaudible. ] MS. BYRNES: Okay: Larry has wisely suggested that I pause here for any questions that you may have. COMMISSIONER KONIGSBERG: Just kind of a general ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 346-6666 204 question, Maureen. I guess we have all gotten fairly tired of sitting through hearings, and what I think I see here is more of a mix of actual work session and, I presume, bringing in some of the consultants. Am I hearing this right; will we spend less time in the formal hearings and more time sitting down on some of the issues? I know it is a mix, but-- MS. BYRNES: I think that’s the answer; it is a mix. And I don’t think we have finalized exactly--and let me say at this point in time, too, if any of the staff members hear something different than what you think we have been saying as a group and what the plan is, please feel free to stand up and say no, I don’t think this is exactly right, and this is what we meant. There probably will be more variety. I don’t know if it will be more or less. I don’t think everything we do will be a hearing of experts representing the variety of interests and perspectives on that particular topic. That may be the case for some. That might be the recommendation of the staff that we need a basic hearing on some basic issues related to the topic-- COMMISSIONER KONIGSBERG: Oh, I see some issues that haven’t been taken up that probably do need a hearing, ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 205 but I guess my fear, Maureen, is there are some of these where we are running the risk of extreme repetition, health care financing being one. We have heard for 12-13 straight months the problems of access and this and that, and I think there is nobody debating that issue. I think what we need to work on is how this gets organized and how it gets paid for. And to me that is going to take a different kind of format rather than just going from city to city and more and more and more. The repetition won’t help in that case. I think we need to start working on some solid recommendations. MS. BYRNES: We have not formalized this as a staff, but what we have often talked about, and most recently I have met with one person, and I probably would meet with one or two more to see what a dynamic would be with our group and a particular person and their particular expertise. And again, only because I think credit is due where credit is due, Diane has made the suggestion that maybe on the financing issue what we want to do is invite someone to come and give a presentation about how does Medicaid, Medicaid, private insurance, uninsured, the blues, the big insurance companies- ~how does all of that array of financing work, so that we ah MILLER REPORTING CO., INC. 507 C Street, NE. Washington, DC 20002 (202) 546-6666 have a basic understanding about how this country finances health care in its variety of public, private and nonpaying ways, and have a dialogue with that person; have them do some background papers, have them do a presentation, and then do a question/answer session so that you as Commissioners all have a very clear understanding and a common understanding of what the different methods of payment or lack of payment are for health care services. At that meeting it might be a time where you would also identify what do you want to do next. Do we then want to convene a small group of experts to struggle about some of those issues related to HIV infection and AIDS and have that small group report to the Commission in the way that working groups report to the Commission. But we have not finalized that. That would be one proposal for doing financing different than holding another hearing on financing. COMMISSIONER KONIGSBERG: Well, I think that has a lot of merit, and I would find that, I think, personally, very instructive for reasons in addition to the AIDS Commis- sion, because I think all of us know pieces of it, but I’m not sure when I’ve ever had a complete picture. And I think ah MILLER REPORTING CO., INC. $07 C Street, NE Washington, DC 20002 (202) 546-6666 207 coupled with that as a suggestion is some weaving in of some notions of the health care systems in this country, the pluralistic systems, the mix of public and private, which is terribly frustrating to the people who are seeking service but also frustrating to those of us who deliver, so that we understand what our system is and is not. That can get a little academic, too, and it will also get terribly discourag- ing, I am quite sure--it does to some of us on a regular basis. But it we can tie that with the--it is not simply the financing, but the type of pluralistic system that we have. You see the confusion we had about what constitutes a public health system. That simply reflects our entire health care system, in my opinion. In many countries, it is much easier. You’‘ve got a ministry of health, and you’ve got a national health program, and everything responds or nothing responds. It is not that way here. MS. BYRNES: Karen, did you want to say something. MS. SOSA: --first it is important to know that we 'took the recommendations that were made at the last meeting in terms of not only in terms-of what the priority issues were, but also in terms of how those issues should be approached. I mean, there was a consensus on whether they ah MILLER REPORTING CO., INC. 507 C Sereet, NE Washington, DC 20002 (202) 346-6666 208 should be ? , whether they should be done at staff level, or whether they should be done by outside consultants {inaudible. ] MS. BYRNES: And if you look at the cheat sheet, it says "financing of care work session"--whatever "work session" means--but that was designed to suggest that it might be something different than our standard, formalized hearing process. COMMISSIONER KONIGSBERG: I am supporting that concept. I have broadened it, perhaps, just a bit-- MS. BYRNES: In terms of what you said about the systems. COMMISSIONER KONIGSBERG: Yes. I just can’t see us sitting through two days of hearings. You may want more than one person, just because that is an enormous task, as a consultant to lead us through it. I think that would be terribly instructive. It will get pretty dry at points, but it is awfully important. COMMISSIONER KESSLER: I think I’m on the same track as you are, Charlie, on.this point, but I want to goa little further if I can in terms of the hearings and testimony and whatever research or consultants we use here on that ah MILLER REPORTING CC., INC, 507 C Street, NE. Washington, DC. 20002 (202) 546-6666 209 particular issue, to ask them to really be bold, creative, perhaps even radical. We need--and I think it would be an important opportunity for this Commission--to sort of raise the level of debate about the whole health care financing system to a point where we get people’s imaginations going a little bit. We don’t need another 30 testifiers saying that it is breaking down, or it is a problem, or it is mired in red tape, or it does not work. What we need--we need to invite them to at least think through what is going on, and maybe someone--maybe several of them--have a creative idea that might get implemented at some point in this process. But we don’t need to reinforce that there is a problem, any more than we have to say again that AIDS is a problem. What we need now is some out-loud dreaming and maybe even pushing the edges in a way that we have not pushed before, because more bandaids on the health care delivery system or the financing end of it is not going to work for long, and it is only going to compound the problem. So we may not strike oil here, but we at least ought to try to get the debate a little livelier, because it is out there in the public--who knows what genius might pick ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 346-6666 210 up on the seed of a thought here and really run with it, and we may end up eight years from now changing the whole thing. But so far there hasn’t been any creativity, any really good idea of what to do. MS. BYRNES: Diane? COMMISSIONER AHRENS: I guess as one who takes either credit or blame--I’m not sure which--for pushing the "non-hearing approach", I'd just like to clarify a little bit. It seems to me first of all on the financing issue, we don’t need to spend time describing how it is. I think most of us know how it is, and it is not working. What we need is to spend some time on how to fix it. And there are some great think-tanks in this town who have spent years figuring out how to fix it. They make great presentations, and they are not dull. I have heard them. They can help you coalesce your ideas and perhaps even we could come in with some sort of consensus on what the big pieces of the pie are and how you fix them. That is what I think we need, from my view, to spend time on. Get two or three people in here who really know this field and have been immersed in it; get them to help us to understand it, and then maybe we can arrive at ah MILLER REPORTING CO., INC. 507 C Sucet, N.E Washington, DC 20002 (202) 546-6666 211 some consensus. I don’t think we can do it in a day. I noticed here we've got December set aside for financing of health care work session along with a hearing on African American issues, and I don’t think we can do those two things. I think once you get into this, you ought not to have three months between what you hear and what you discuss. It seems to me we need to put that into a session--having been through this in another arena, I say from some experience that these issues are kind of complex, and you need to pull them together and not separate them by several months. The other plea I guess I would make--I think almost everything on this list that we need to deal with, it would Ibe my preference that we deal with it in that kind of context, not in a hearing format. The African American hearing, for instance, we have heard 50 pieces of that spread throughout the last year. Many people come at us, but they say the same things. I think we need to self-select. I think we need to select again a series of--I don’t know, maybe three people, maybe six people--and sit down with those people and have a good session with them so that as they make their presentations we can in a sense pick their brains or flush out what they are saying. ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC. 20002 (202) 546-6666 212 I never feel very satisfied when a wonderful panel- -and they were all wonderful this morning--walk away, because I don’t think we have really pulled out of them what we need perhaps to hear, and I don’t think that can be done in 15 minutes. So I guess my plea would be, with just about everything you’ve got here--substance abuse--heaven knows, Don DesJarlais is marvelous, and I know he is marvelous, but I don't feel like I have had a chance to hear him out--and it can be done with respect to all of the minority issues, adolescent issues. I think the public and all the constituency groups have really had a great opportunity in the last year to appear before this Commission. I know that everybody out there hasn’t, and they never will; they will all want to come in and be heard. But I think now is our time to address our agenda the way that we feel it needs to be addressed to do the job that we have been given to do. And I guess my plea is that sitting and listening to 25 people in one day is not the way I think we should go at this anymore. COMMISSIONER GOLDMAN: Two things. One is with respect to the financing issue in particular. I think there ah MILLER REPORTING CO., INC. $07 C Suect, NE Washington, DC 20002 (202) 546-6666 213 are certainly preliminary steps that we have to go through to make certain decisions. For example, are we going to deal with the issues of financing our health care delivery system in general and talk about those kinds of issues, or are we going to deal with interim solutions based upon the existing financing system and how it relates particularly to AIDS and HIV infection and how those issues can be dealt with over the short- and near-term, while the country goes through its perhaps decade-long debate on how it is going to deal with the national health care system; how are we going to deal with those issues. And we have to make those kinds of preliminary decisions initially in order then to be able to focus consultants as to what we want them to tell us and what we want to talk about, because unless we make those kinds of initial decisions to start with, we are really not going to | operate efficiently because we may do one thing and then decide to do another. That does not make sense to me. The second question I have has to do generally with the work plan and with the staff and organization function. That is, is there an assigned function in some way to determine what is being done outside of the Commission in terms of the community. I know you talked about Jeff being ah MILLER REPORTING CO., INC. 507 C Street, N.E Washington, DC 20002 (202) 546-6666 214 involved in research. But for example, on the financing issue, I guess somewhere, at some point, I think Secretary Sullivan--there is supposed to be a report coming out of HHS as to recommendations, and I assume there will be continued reports from other entities and organizations, dealing with different aspects of things as we are doing them, and the last thing we need to do is to reinvent wheels and hold hearings on things the week after somebody else is making a report on that topic. I was wondering if there is some functionary structure that that has. MS. BYRNES: Let-me answer that question directly and then propose that I walk through a little bit more and then pause, and see if walking through answers some of those concerns that were raised as well as any that may come up as I go through. But to answer, my reaction to what you just said, Don, is those are exactly the questions I would want to ask somebody who has been living with financing issues for the last 10 or 20 years or 15 years--what makes sense? Does it makes sense to just do it in the long term; does it make more sense to do it in the short’ term; and what is everybody else doing. ah MILLER REPORTING Co., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 215 I would want an expert consultant or group of consultants that we hired to tell us what everybody else is doing. We don’t have to bother researching that ourselves. I think that is an expectation I would have of a few experts who come not only to talk to us about the issues, but who else is doing what, and what would make what we are doing coordinated with them, if that is what we want, or quite different because they are not willing to politically say what is the truth or have other constraints around them that this Commission would not. I think some of those questions can be answered. And my suggestion in response, Diane, to what you raised is ito say in financing I think we should go a step at a time; that we charged out three clearly-defined times that this Commission would struggle with some tough issues around financing, and as we go along, if there needs to be more or we need to think about how we would do it in an additional way, I would suggest that we think of that as we take each step, as opposed to trying to block a different amount of time, because we have tried to accommodate all of the different priorities that were highlighted, touch on them in a way that the Commission wanted to in a fairly in-depth way. ah MILLER REPORTING CO., INC. 507 C Street. NE Washington, DC 20002 (202) $46-6666 216 Some of them require more time than others. And there may be a theory of trying to do all of the financing at one time or dividing it up. We looked at it a couple of different ways and suggested that these are so complex that you want to come back to them a couple of times. I would suggest that we leave the three identified times, but know that this is an issue that you may say "This just isn’t working for me, and we need to do a week on financing," or an extra day, because I am concerned about losing some of the other topics if we let financing take up all of the Commission time, and I think you’ve got some experts who can do a lot of that homework for you and use the time real productively together to struggle through some of those issues that they raise. COMMISSIONER DIAZ: How would that consultant's work be incorporated into our final report? Do we deliberate and then make our own recommendations? MS. BYRNES: Oh, absolutely. COMMISSIONER DIAZ: So it isn’t appended, or anything like that? MS. BYRNES: No.- I think we would recognize the contribution of that consultant, but it is the product of the ah MILLER REPORTING CO., INC. $07 C Street, NE. Washington, DC 20002 (202) $46-6666 217 Commission. COMMISSIONER DALTON: I guess, Maureen, I’d like to second your desire to walk us a little further through it, or to put it the other way around, I'd like to urge us not to try to do everything today. Obviously, the first phase here is an exploratory one with respect to finance, for example, to see what has been done, to see who is doing it, to see what is about to be done, et cetera, et cetera, and we really can’t begin to make a lot of those other judgments until we at least get the lay of the land. It seems to me that the structure here certainly is one that enables us to sort of educate ourselves ona rolling basis and provide spaces for and opportunities to talk as a group and in other ways as well. I must say that in terms of the various comments that have been made, it seems to me that they are all consistent with what I see on this page, and it seems to me that the staff has tried to respond to what we said at our retreat and at our couple of working sessions. And it might work out differently, but it seems to me to represent an awful lot of work to even, first of all, put it all in ah MILLER REPORTING CO., INC. $07 C Street, N.E Washington, DC 20002 (202) 546-6666 columns, but passing on that, to be able to balance all the difference issues that we said we wanted to address, to get them all in by August and indeed to leave us time at the end to come up with a final report. I’m glad you did that, and that you don’t have us working on program or substance stuff lall the way to the end. And I would be happy to be walked further along, but it does seem to me that probably everyth- ing that we are going to suggest to you today you have already thought about. And we might disagree around the edges but this is pretty impressive. MS. BYRNES: Dave? COMMISSIONER ROGERS: Well, Harlon said part of it, but I am really very pleased with what you've got here, and I think we may be trying to make it more complicated than it needs to be. And last time I thought we went quite a ways in saying here are the things we want to go at; we can’t keep using the same format, which is just hearings. So I complete- ly buy into what Diane says. We need a new mechanism. We may want that sometimes, but not always. We can use consultants, we can use outside groups. My feeling is it will be self- correcting as we go. We’ll know if we don’t have all the dope we need or whether we want an outside expert, or two or ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 219 three. And I like Larry’s idea of getting some imaginative new things surfacing from the group. I like what you’ve got here, and I hope you don’t tell me in more detail than I really want to know what you are going to do. MS. BYRNES: Karen? MS. PORTER: This is not like letting the cat out of the bag, but could we talk a little bit about where we want to be with reports at the end. I think that would give you a general sense of what some of us are doing--it hasn’t been talked about at staff level-- MS. BYRNES: That would be great. MS. PORTER: I think it would make it so the questions aren’t as extreme. Maureen and Jane and I have talked individually about first coming up with a final report and also having several interim reports, so that it would be actually two documents as opposed to one. I think in the end what we are looking at is a report that tells us where we have been, where the epidemic is in 1991 and what needs to happen not in the sense of giving 500 recommendations that are singly put out, but in a more local sense, both long-term and short-term ah MILLER REPORTING CO, INC. 507 C Street, NE. Washington, D.C 20002 (202) 546-6666 220 woOlutions. And I think that the issues we want to corner there are research, financing, prevention and education, public health. A lot of what we heard this morning in the very first panel is very important information that we want to be articulating at the end, such as the view that looks at where the public health system has been, where the States are, but more importantly, where we need to be, what needs to be happening, with the knowledge of what has happened thus far. We have known for a while now where we need to go. We need to know why it hasn’t gone there and what needs to be done to make it happen. We have added the idea to take the interim reports and use those as documents that would stand alone, that would address issues that have not been addressed on a national level. I think prisons is an area that comes out. We clearly heard in the last year that there is a need for a body like the National Commission to be putting out a clear statement that would be useful, that would have some impact, and that is not being done on a national level. There are other areas--adolescence, women, and certainly in many of the racial/ethnic populations, that is clearly something that ah MILLER REPORTING CO., INC. $07 C Sucer, NE Washington, DC 20002 (202) 546-6666 221 needs to happen. There needs to be a clarion voice, as Dr. Allen has told us in the past, coming forth to make a difference. The is idea that we have these interim reports that would touch on areas that no one has addressed in a way that this Commission could address them. So we would pick out single issues that then would not be incorporated in the end as chapters. It would be to look at the issue from a public health perspective, to do the State, Federal, local analysis, to do the barrier analysis, in some sense, so you are really saying this is the long-term solution-~-the health care system is in crisis, and this is what we need to do to make things happen; that really, it belongs holistically in a system that is failing, and this is what needs to happen; and in the short term, these are the financing and public health solutions that we can offer. And then, the very effective long-term solution is prevention and education. Yet we articulate that in the end, and state very clearly that this is where we have been failing, and this also is an area that needs to be more dynamic. I think another area where such a small report is very useful is the area of Native Americans. It is not an ah MILLER REPORTING CO, INC, 507 C Street, NE Washington, DC 20002 (202) 546-6666 222 area where there has been a lot of talk. We have heard from Willie Benalon [phonetic] and some other people that there is definitely a concern that there be something articulated from a national group, that says we are concerned with what is happening here, and we need to take a more forward view of what needs to happen in that setting. [Remainder of comments are inaudible. ] MS. BYRNES: Thank you, Karen. I think that was real helpful. Knowing the end product and working back has jalways worked for me. Let me make a Suggestion. We have spent a lot of time trying to put those topics that the Commission requested full Commission attention to, trying to find the dates, trying to find a place, and making sure those topics got high visibility. We then wove in the other topics in a way that we also heard from the Commission in terms of staff work or outside consultants and charted them on this table. We also made recommendations about site visits and locations for full Commission activities. When I describe what the process is for that, let me ask that we perhaps just set this aside; that we have not finalized the structure for most of those activities. What we spent a lot of time on was ah MILLER REPORTING CO., INC. 507 C Sureet, NE Washington, DC 20002 (202) 546-6666 223 making sure we got those top issues budgeted for, if you will, or had time allocated across the top, and also tried to make sure that the other 11-12 issues are addressed in some fashion, either by the staff or the outside consultants. We also looked at geographically, related to incidence, related ito the 16 most heavily-impacted cities, those places that we have not yet visited in the country. A lot of time was given to thinking about where we needed to go geographically and what made some sense geographically related to some of the issues that we were looking at as the full Commission. So why don’t you take a look at what the plan is that we have put together, the proposed locations and provide us some feedback after you have had some time to look at this, and we can maybe better answer questions one-on-one. But the exercise was to really get those issues onto paper, time-line them out so we had a particular place, a particular time, a particular topic, and also schedule interim reports so that we are always moving in the direction of keeping the issue and our activities on the front burner and in the minds of policymakers and thinkers and constituen- cies and people who are interested in what the Commission is doing and moving the agenda forward. All of those things are ah MILLER REPORTING CO , INC. 507 C Sureet, NE Washington, DC 20002 (202) 546-6666 224 reflected in the plan. I would suggest at this point so that we make sure we cover everything else we need to do today that you take a look at this and then provide me with some feedback that I can share with the staff and see if we might be able to take some of your input and, as we go, say this is what we are planning on doing for the next two events or three activities. Jim? COMMISSIONER JIM ALLEN: Could I just clarify--as I look through the highlights here, you’ve got only a couple of the meetings where you have them cleared marked out as a hearing, and one or two where they are site visits. The others are indeterminate at this point; is that a fair statement? MS. BYRNES: I think what Karen said in terms of some issues that people have specifically requested that there be hearings, but we also have some people who are asking that they be fairly interactive. I really don’t want to say at this point in time what the structure for any of these is. I don’t think that that is finalized. And as you see, we are not getting together as a full Commission in October. We have already agreed to a site visit and hearing ah MILLER REPORTING CO, INC. $07 C Street, N.E. Washington, DC. 20002 (202) 346-6666 225 combination in Puerto Rico, and we can certainly keep you up- to-speed as to at least what the staff’s recommendation is for the structure of how we look at those subsequent issues. COMMISSIONER ROGERS: Maureen, I think the staff is to be congratulated. You did what we asked you to do. You've got all the stuff we had down here. Now we will take a look at it and feed back to you--but we shouldn’t try and edit your document now. I think this is swell. This will remind us of everything we have asked to do, and then we’ll have to decide exactly how we do it. COMMISSIONER GOLDMAN: Maureen, where is on this report--and maybe the print is too small so I am missing it-- the project of reviewing the recommendations of the Presiden- tial Commission? MS. BYRNES: It should be on here. COMMISSIONER KESSLER: I remember a discussion about that that I think Jim commented on, when we were trying to rank that, or we had it on our list-- MS. BYRNES: It is ongoing. COMMISSIONER KESSLER: You commented at that time that that might not necessarily be done by this Commission, but that your office was doing it. ah MILLER REPORTING CO., INC. 507 C Street, N.E Washington, DC 20002 (202) $46-6666 226 COMMISSIONER GOLDMAN: There was some discussion of it, and there was even some question of how important it is, and I think probably some of us on the Commission probably think that a follow-up and review of the Presidential Commission recommendations is more important than some others on the Commission, and even Jim, I think, honestly would feel it is important--I think that would be fair to say, and I don’t mean that-- MS. BYRNES: Don, let me meet with-- COMMISSIONER ROGERS: Aren’t those things for us to feed in? I mean, if we start saying which is highest on each of our agenda, we're going to be here all afternoon. MS. BYRNES: There is an acknowledgement in the annual report, that I quickly want to talk about, that that activity is ongoing. I think we just don’t have it on here, but I want to talk with the staff about what our plan was for how we would do it--like I think that it is a mistake that it’s not on here, but I’m not sure, and I should talk to the staff to make sure I don’t misspeak. COMMISSIONER DIAZ: And will it be part of that final report. MS. PORTER: It is something that we are working on ah MILLER REPORTING CO., INC. $07 C Sueer, NE Washington, DC 20002 (202) 546-6666 227 every day. [Inaudible comment. ] MS. BYRNES: I think it is an important question, and I really give you a lot of credit, Eunice, for always t being the person who brings it up--weren’t we asked to monitor what they are doing. We do that on an ongoing basis, and we really dida concerted effort to get something in this annual report. I think we should talk about some of those things that Karen has just said and respond formally to you about how we feel our activities of the coming year will respond and then how that might be acknowledged as to how the Commission considered that follow-up to the Presidential Commission report. COMMISSIONER DIAZ: But I am more concerned that it really be reflected and we make a commitment in the report, because we are charged Congressionally with that happening. And we can’t just have a report on all these other wonderful items you have mentioned and say we went through these issues, and this is what we think, and report to the American people, at least as we were created, to look or implement or monitor--I forget the exact words-- MS. BYRNES: Right, I understand, and it is a good point. And we certainly would want to be planning for that ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 228 now, but there is a time on this work plan where the Commis- sion outlines the final report. And clearly, if that is something that needs to be in the final report, that needs to be raised at the point where we begin to say this is the structure of the report. COMMISSIONER KESSLER: I agree with Dave that we probably shouldn’t get too far ahead of us on this list, but I am concerned about November, and keeping in mind what we said about changing slightly the format in which we collect the information and hear from individuals--are we budgeting enough time, November 27 and 28, to deal with not only Puerto Rico but with the South Bronx? I think that site visit is sort of a dual site visit. I mean, it is the Bronx and it is Puerto Rico. And I know we are going to be pressured to hear from everybody in the world, which I think we are also saying we can’t do--we can’t hear from every resident in Puerto Rico or every government official or every CBO. But I ama little nervous that for some reason that looks to me like it is a short visit, and it does not accomplish what we need if we are doing site visits and hearings. If we were doing just hearings, that might be okay; if we were doing site visits, ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 229 it might be okay. But it is a combination meeting, right? MS. BYRNES: Yes, it is. COMMISSIONER KESSLER: I don’t know. You have been on planning, so I don’t know-- COMMISSIONER DIAZ: Three of us were participants at a recent meeting just a few weeks ago in Puerto Rico that I helped to coordinate or put together for the last year, with a couple of organizations and the support from Public Health Service, Jim Allen, Dr. Mason and others, and I‘’d just like to tell you that perhaps the only criticism from the group about that meeting was that two days was not enough, that they would have liked to-have spent two and a half. So following Larry's advice, if there were any possibility that, like we did in L.A., we could get an early start let’s say on Monday afternoon, it would help to solve some of your concern--in other words, rather than start the meeting on Tuesday, that it start earlier on Monday, similar to L.A. If you look at Los Angeles, it was two and a half \days, by starting by 1:00 or 2:00 and then utilizing the evening before. But I am sensitive to what you are saying. COMMISSIONER ROGERS: Maureen, I would plead with the group that it seems to me‘we’ve got this; let’s put in ah MILLER REPORTING CO., INC, 507 C Street, NE Washington, DC 20002 (202) 546-6666 230 our suggestions. That’s what we’ve got a staff for. Let’s not try and design all of these hearings right now. We are all going to have differing views of it. And I think what you have said, and what we are all saying is perfectly appropriate, but we can’t decide it here. Let’s take these back and let’s say, hey, you forgot this, or you forgot that, or we ought to include more time on this, or what-have-you, but not try and use our collective time to do that kind of group edit. I think that is where we get into trouble is when we try and do that. COMMISSIONER DIAZ: Excuse me. You’ve said that three times so far, and I have really got to disagree, because I thought this was all about consensus building. I think if Maureen heard from five of us saying the same thing- -I’ve got a problem with this Charlotte, North Carolina business--Maureen would say, oh, tell me your problem. But I have no idea that maybe Scott is calling about that, either. You may just say, "Scott, thank you very much." That does not build the kind of consensus we’re talking about here. And I thought your staff work is done, and you really wanted to hear as a group from us about this product. MS. BYRNES: Absolutely, individually and as a ah MILLER REPORTING CO , INC. $07 C Street, NE Washington, DC 20002 (202) 346-6666 231 group. I think given how much information we have given you, and given that this is a structure that we then want to work jwith, we could work well with individual feedback. And I would be happy to say, gee, I heard that from someone else, or that might not work because we had a particular concern about not being in that region. I know from what the staff has shared with me and working with them what went into the thinking, and if there is a concern about that, I do think in fact we could probably address most of the individual concerns in a way that the Commission as a whole would support because we designed this with all the information we got in July about what do we want at the full Commission, what do we want at staff, what do we want outside. And clearly, we want some of these activities, if not all, but at least a lot of them, to feel real hands- on and interactive. I think that message is very clear. And I heard you say that, Larry, about Puerto Rico, and we are still definitely in the planning stages of Puerto Rico. I think that is information we can take back and provide you with something that shows that we heard you. COMMISSIONER KESSLER: But I think there is something else going on, just-watching the faces of in- ah MILLER REPORTING CO., INC. $07 C Street, NE. Washington, DC 20002 (202) 346-6666 232 dividuals. I guess I need a sense of the pulse of the group--are people feeling in line with David, or do we need this conversation? I guess that’s probably what we need to call the question on now is whether we want-- COMMISSIONER ROGERS: I sensed the pulse, too, and they clearly weren't feeling in line with what I suggested. So go to it. COMMISSIONER KONIGSBERG: I don’t have a problem with the elements of the work plan because we went through a planning process and agreed to that, and I again add my compliments to this work plan; I think it is excellent. I have a question about some of the sites and the rationale for choosing them and the rationale perhaps for leaving out on in particular. I don’t understand Baltimore, Charlotte or Chicago, nor do I understand necessarily why South Florida, particularly Belle Glade, is left out since there is really something rather unique. Maybe we could get ‘some background on that. MS. BYRNES: It was a topic of much conversation, debate, discussion, et cetera. And Florida was always on the list. The cities identified were Atlanta, Miami, Chicago, Charlotte, Denver, Houston, San Francisco, Philadelphia, MILLER REPORTING CO., INC. $07 C Street, N.E. Washington, DC 9.20002 (202) 546-6666 233 Baltimore--was input from the Commissioners, other people, and geographically looking at where we have been, where we haven’t been, and where other people haven’t been, so that we could perhaps shine a spotlight on particular parts of the country that haven’t gotten much attention or whatever the particular concerns are in that particular part of the country. COMMISSIONER KONIGSBERG: Everybody has been to San Francisco. MS. BYRNES: Not everybody has been to Oakland. And given the issues that we were suggesting the Commission look at that were on the priority list, we chose that location because of the issues. We thought about a community and a city and a part of the country that has been struggling over some of those issues, where not only the expertise was-- because I don’t think the plan was to give you a hearing on those issues, or solely a hearing, but site visits. And that is a section of the country that has really addressed some of those particular concerns. That is why we didn’t just pick a city out of the lair. The cities that you see reflected on there are either because it is a part of the country that we have yet to go to ah MILLER REPORTING CO., INC. 507 C Street, N.E. Washington, DC. 26002 {202} 546-6666 and feel needs to have National Commission recognition and attention or because it fits the topic. And when we looked at the limited time that the full Commission got together, Florida didn’t specifically give us a reason other than that was a place we wanted to go. And one of the thoughts on the part of the staff was that Larry is going to chair a working group; I am going to guess there will be other working groups around these issues because they are meaty and they are complex, that surely, the working groups could say we are going to specifically look at this issue, and let's meet in Florida--or someplace else. I am using Florida as an example. COMMISSIONER KONIGSBERG: Let me just put one more plea for Florida, bearing in mind that I don’t work there anymore so I’m not beating the drugs for that reason, and I have not brought up Kansas specifically. I think there are a combination of things going on in Florida that I think cry out for a visit. First of all, Florida is the third or fourth State now in terms of cumula- tive incidence. I think that the problems in Florida will continue to magnify, and they are not all one problem. If you go to North Florida, it is going to look like South Georgia; if you go to Central Florida, it is one thing, and ah MILLER REPORTING CO., INC. $07 C Surcer, NE. Washington, DC. 20002 (202) 346-6666 235 you heard from Dr. Magenheim today. If you go to South Florida, there are a number of different things. So just from sheer numbers and impact on the health care and the public health system is one issue. Belle Glade is unique because of the migrant issue. It has an international connection through the Caribbean that is quite fascinating. NACO heard the best view on that from the bus driver, as I recall, Diane. He was quite fascinating when he opened up and he knew about--he didn’t know anything about AIDS, but he knew about the Jamaican connection. I know that Belle Glade has been studied to death, but not exactly like we would do it. Miami continues to be a huge polyglot of cultures and tensions of a political and a racial nature, with a strong international connection. I just think that we ought to be careful to not finish up a full two years of the Commission without looking at a State that is equally important as New York and San Francisco in terms of what it really means to the epidemic. The epidemic of AIDS is not over in Florida. In many ways I believe it has just begun. In the 23 months since I left Ft. Lauderdale--and you will probably hear Jasmin Shirley say ah WILLER REPORTING CO., INC, 507 C Sureet, NE. Washington, DC 20002 (202) 546-6666 236 this tomorrow--the case load in the Northwest Health Center quadrupled. That is very scary. And if you look at the case per 100,000 rates for Ft. Lauderdale, which I just did recently, it is second-highest in the country now. So something is going on. MS. BYRNES: I would suggest, then, Dr. Konigsberg, that one of the things we consider is a Florida site visit, not because it is specific about a particular population or a particular issue. And as we begin to look at matching the issues with the places we needed to be, we were also very careful about not stigmatizing certain cities or people or issues in a particular place. The possibility exists that perhaps you and a member of the staff would want to work together to schedule in our life, but not on any of those already~set dates, a Florida site visit. COMMISSIONER KONIGSBERG: That would get at it-- MS. BYRNES: Without a particular issue, but to look at--if that is something the Commission wants to do, it is a Commission visit to look at the State of Florida, not a particular issue population or-- COMMISSIONER KONIGSBERG: Well, I think just in the ah MILLER REPORTING CO., INC. $07 C Street, N.E. Washington, DC 20002 (202) 546-6666 237 interest of efficiency, and then I will leave it alone, it would probably need to be South Florida because I think the State is so large that trying to travel the State would be difficult. I would agree, though, again that a hearing format would not necessarily be appropriate; I think that taking a look first-hand, talking with a few people and let it go at that. Key West is another very unique situation, I think. MS. BYRNES: I would suggest that we work with you and that be a separate issue as opposed to being filled into the dates and the 17 topics. Larry? COMMISSIONER KESSLER: One of things that occurred to me this morning after hearing Dr. Myers from Columbus is that Columbus is more like the future of this epidemic than Chicago, although I have been an advocate of going to Chicago, but when I look at the list, that is possibly one that might be adaptable. If they are doing the right things in Columbus, and if they are doing some things that they are learning from, then we can learn and the rest of the country can learn. I mean, Columbus is the center of the country in more ways than one--in terms of information, polling,, the ov ah MILLER REPORTING CO., INC. 507 C Sereer, NE. Washington. DC 20002 (202) 546-6666 238 Nelson ratings, the whole bit. But it is also symbolic of mid-America, in some ways more so than Chicago is. I would like the staff and the Commissioners to think about possibly adding Columbus or shifting from one of these other places to Columbus, or even dealing with possibly the April thing, instead of doing it in Washington, doing it in Columbus or something--I don’t know. I am just throwing that word in. CHAIRMAN OSBORN: Let me urgently beg that we not get off the plan of going to Chicago, however. There is a great deal to be learned in Chicago, and it is a very Wimportant place that has fared very badly for reasons that may become evident as we go there, but they have had far less centralized attention in various competitions for demonstra- tion grants and whatever. I think we have had very well- thought-out and forthcoming invitations from many groups in Chicago to visit, and I think we have signalled that we were very likely to do that, so that to back out at this point--we would have been doing it in October had we not been so concerned. So while we are talking realistically, let’s keep that kind of sensitivity in mind, too. I think we could do some substantial damage by not going to Chicago, having sent ah MILLER REPORTING CO , INC. $07 C Sureer, NE Washington, DC. 20002 (202) 346-6666 239 the signals that we have. MS. BYRNES: And again I would suggest that we take that feedback--as I said, we did not take out a bunch of pushpins and throw them on the board and say maybe this is where we should go. There was a lot of thought, and it was very many of the things that you raised, Larry, not just going to the heavily-impacted cities, but places like Charlotte and a few others on here--let’s hear what you just said about Columbus, Ohio. Let’s go back and see if there is a way to respond to that. There may be a way to respond to many, but not all, of the suggestions. But you make a point lthat I think we should consider. Karen, did you want-to say something else? MS. PORTER: One of the reasons why we thought Chicago was important was also because of the Hispanic community, and you will notice that it is keyed to the Hispanic hearing here, because Chicago is very diverse. So it is important to us because it serves several purposes. It is a city that has a very high incidence, a city that is also in the Midwest, and it was a good place to get a cross- section of the Hispanic community and do very good work on that issue, too. ah MILLER REPORTING CO., INC. $07 C Street, N.E Washington, DC 20002 (202) 546-6666 MS. BYRNES: Which is why it is in March. We sat down and said we’re flying into Chicago and March--but when we tried to look at getting certain issues addressed in the time that we had, with the effort that it will take to understand and really digest some of these, it happens as you try to mesh these things together that the Hispanic issues and others and March and Chicago all come together. So we said, well, that’s really how this works, and we’re going to get a balance of the geography and the issues--so it is not an accident that that happened. COMMISSIONER KESSLER: I actually withdraw my suggestion of scrapping Chicago because I remembered the other two reasons why we ought to look there is that there is a large Native American community and there is a large (Appalachian community in Chicago. It is a hub in terms of the rural AIDS that is going back to Kentucky and Tennessee and southwest Virginia and so on. So that might become part of that. COMMISSIONER GOLDMAN: Just a question of our own agenda. Are we going to have an opportunity--and I certainly would like to--to revisit a review of the work plan tomorrow afternoon when we meet, or are we not planning to do so? ah MILLER REPORTING CCO., INC. $07 C Street, NE. Washington, DC 20002 (202) 546-6666 241 What is our plan in terms of that? MS. BYRNES: I don’t think there is time for that tomorrow. My understanding is that a lot of tomorrow is devoted to receiving the working group report, and Carlton is going to give us an update on what is happening legislatively and in Appropriations. And this is part of the problem--there are other people who also--this has not happened yet today--time to discuss what you hear tomorrow morning and time today to discuss what we have heard this morning. If you want to revisit this tomorrow, let me know. COMMISSIONER GOLDMAN: Because I really haven’t had a chance to think about it; I’m just getting it for the first time now and looking at it. That’s really basically all. COMMISSIONER ROGERS: I got bombed out before, but let me try it again. Couldn’t we feed those back in to the staff and let them put out a new one for us, that has these feed-ins? COMMISSIONER GOLDMAN: The other point I wanted to make--I have one other concern, and that is--and I think I read it in here--the planning for our final report. I am particularly concerned with one aspect of the final report. ah MILLER REPORTING CO., INC. 507 C Sureer, NE Washington, DC 20002 (202) 346-6666 242 I think an important part of our final report has to be or ought to be what I would call a dynamic and well-said case statement as to AIDS on an overall basis. And I think it is not too early, frankly, to begin working on that process now. What I mean by a case statement is responding to in a general overall way much of the cares and concerns of people who have been asking why are we devoting resources to issues of AIDS and HIV infection; of what importance is it; how is it something that is affecting the lives of every American. I think that that kind of overall statement--I would call it a case statement; somebody else might call it a preface or an introduction--that really serves as a prelimi- nary to all that we do in terms of the specifics of dealing with specific communities or specific applications or specific arenas, but that deals with the overall issue. And I think we have responsibility for making what I would call that case statement. And I think that that is going to be more difficult to do properly than merely to talk about planning it in the late spring and expecting it to be done in a relatively short period of time with appropriate input from all of us. COMMISSIONER DALTON: I must say, now thinking back ah MILLER REPORTING CO., INC. $07 C Sueer, NE Washington, DC 20002 (202) 346-6666 243 to the initial paper that you gave us with the staff organiza- tion or reorganization, I do think it is terrific that somebody is now thinking about the end, and every time we hear a witness, we think how does that sort of fit it--that basically, everything is done now with an eye toward thinking how it is going to get acted on in the end. I think that is a really important part of reorganization. COMMISSIONER ROGERS: Let me just expand a little bit. That is something that might start right now as a staff document, which is terribly important because it is a question we are all asked every day why are you spending to damn much time on this when 55 times more people die of heart disease or cancer or what-have-you, to put together a crafted piece which says here is why this is important right now~-we are all saying it out there, and here is why it deserves this kind of attention and here is why it does that. That is something that we could start on that could be put together, that could then be circulated and we could all add our input and begin to be polished in terms of--we have a reason for being, but the questions are so intense now in terms of why all this on AIDS, why not on this, why not on that. And I think that is something that can be--I like Don’s suggestion ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 346-6666 244 to start that right now. COMMISSIONER GOLDMAN: And every hearing that we have adds a little layer to that, but I think we have to really begin the process of working on it now-- COMMISSIONER ROGERS: And refining that gem. MS. BYRNES: And I would take advantage of the fact that both chambers of the Congress and the President of the United States just said that in the Ryan White bill. That is what that was designed to say. In some ways, there are special things that need to be done right now about AIDS. It is not a perfect bill, but I think we need to say that. I am actually sort of heartened by the fact that I think the Congress and the President just recently said that when they implemented that bill. COMMISSIONER GOLDMAN: What did they say, and what did the Appropriations Committee say? MS. BYRNES: They said it is a good idea. COMMISSIONER GOLDMAN: And if one were to say that one’s actions determine where we put more money rather than iwhat one says, then maybe they’d say just the opposite. MS. BYRNES: And that is a point that we want to make--how do you measure what people mean. Do you do what ah MILLER REPORTING CO, INC. 507 C Street, N.E. Washington, DC 20002 (202) 546-6666 245 you do or do what you pay for. (Laughter. ] MS. BYRNES: I hear you, Don, and I‘1ll make sure that we address that. That’s very important. COMMISSIONER JAMES ALLEN: I'd like to just go back to discussion of the schedule for one second more and urge the staff to put. together the November Puerto Rico meeting as rapidly as possible--not in terms of the details, but in terms of the timing for travel--because it is proximate to Thanksgiving, and I understand that that is an extraor- dinarily heavy travel time to and from Puerto Rico. MS. BYRNES: This too is a topic of great discussion at 1730 K Street, so we'll try to do this as quickly as possible. But I hear what you are saying in terms of getting as many people there that we would like to have who need to arrange their busy schedules. That is a good point. Diane? COMMISSIONER AHRENS: When I look at the schedule again, I’d just like to put my two cents’ worth in and support the South Florida visit, and I'll tell you why. I think it picks up on some of the issues that are scattered throughout this that could coalesce in South Florida. You’ve ah MILLER REPORTING CO., INC. 507 C Strect, NE Washington, DC 20002 (202) 546-6666 246 got a high population of women and children, you’ve got Haitians, you’ve got Afro Americans, you’ve got Hispanics, you’ve got the international connection, and you’ve got a very strong bisexual community, for instance, in Broward County. So what you’ve got is a combination of all of these, and to do a two-day site visit where we would get this through Jackson Memorial and other places, including Belle Glade, I think would pull out many of the individual things that you are tapping into that are spaced throughout this. I am concerned about using that as kind of an addition to, because I think we are in a pattern of meeting once a month for two days and setting this aside, but if you inject another one, I’m afraid it may-- MS. BYRNES: Diane, I think we should go back and look at that because I would be afraid of short-changing the time and attention given to some of those issues that were really highlighted as some key priorities on that 17-item list. But let us go back and look at what both you and Dr. Konigsberg have said. I am concerned about a two-day trip to Florida that would do the Hispanic community, the African American ah MILLER REPORTING CO., INC. 507 C Sureet, NE Washington, DC 20002 (202) 546-6666 247 community, women, and children--those issues I think deserve time and attention in a way that the Commission was highlight- ing in our July meeting that I am concerned a site visit might not address. June? CHAIRMAN OSBORN: Another way of looking at what Diane was saying, though, was if we look toward the end of our time, when most of the time we are reporting writing, a visit of that sort might serve to underscore and bring everything together. So the summertime next year, while we are otherwise drudging away at words in the thing, it might be that that sort of thing would really reinforce some of the impressions that have been taken piecemeal up until then. MS. BYRNES: If that is along the lines of what you were suggesting, Diane, I don’t think I understood you because that makes some good sense to me as well, what you just suggested. COMMISSIONER AHRENS: I was not suggesting that this would replace a hearing, but I was suggesting that this was what we will put flesh and blood on what we are hearing in the hearings. MS. BYRNES: And one of those times we would ah MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC 20002 (202) 546-6666 248 struggling about writing and summarizing and highlighting what it is we saw, and to do it in a place where that is all around us sounds like a good suggestion to me. COMMISSIONER KESSLER: Charles said something, though, that we didn’t bring up when we had our list of 17 important issues, and it struck me as extremely important. That is--I forget your exact words--but it was the interna- tional connection. Even though we are the United States National Commission, we fail to address the issue of AIDS in the Americas and our connection in the middle. We have the opportunity to get clobbered, particularly when we are talking about the movement and the migration and the immigra- tion and the bridges that exist between Mexico and Latin America and South America and’ the Bronx and Belle Glade and the Caribbean. This is an important topic. That may be the primary reason to look at Florida, rather than some of the other issues that we wish everyone would put emphasis on, because that is not going to change either unless we change the whole status of that traffic--and no one is advocating that. But if we don’t focus on that as a real kernel in this epidemic, we are going to miss an important ingredient. ah MILLER REPORTING CO , INC. 507 C Street, N.E Washington, DC 20002 (202) 346-6666 249 COMMISSIONER KONIGSBERG: I think, Larry, that probably captures, maybe better than I expressed it original- ly, why South Florida, because there are lots of places we can go that are heavily impacted. But there is something unique about South Florida. That is what Diane is reacting to, because we all went there. I think the idea of using that--I mean, it is not any hotter in South Florida in June than it would be in Washington, D.C., and the room rates are cheaper--I think a lot of things will fall into place as to how heavily impacted that whole area is, but what is unique about it as opposed to something else. COMMISSIONER GOLDMAN: Are there expensive rooms in Belle Glade? COMMISSIONER KONIGSBERG: I am not suggesting we stay in Belle Glade. MS. BYRNES: Don? COMMISSIONER GOLDMAN: The other issue that we've sort of talked about, and while I think I was the one who added it to the list of the ones that we consider, and I think that there was a good deal of consensus, and that is the issue of voluntarism. I don’t think we have seen the end of ah MILLER REPORTING CO., INC, 507 C Sueet, N.E Washington, DC 20002 (202) 546-6666 250 it. And I appreciate your presentation today, but I don’t think it is an issue that we can simply say that we have disposed of properly, and I think we have to continue to focus on it. COMMISSIONER KESSLER: I think that’s a perfect topic for a subgroup report. COMMISSIONER GOLDMAN: Yes, I would agree. CHAIRMAN OSBORN: Maureen, since we are dealing with all of this today, I really wish that we could get the March dates straight. It will be an unmanageable crisis for me if we don’t. And I have a non-negotiable conflict on the 14th so that I can’t do the 13th and 14th, and in fact, I can’t do anything after that. MS. BYRNES: Yes. I owe you an apology for that. I was going to try to fix these dates before we got together, and that’s why I have "possible date change"; I had hoped we Might be able to finalize dates that would accommodate the Chairman being able to participate, obviously, in that meeting. COMMISSIONER KESSLER: What are the days of the week? CHAIRMAN OSBORN: The 13th and 14th is a Wednesday- ah MILLER REPORTING CO., INC, 307 C Street, NE Washington, DC 20002 (202) 546-6666 251 Thursday, and I must be in California on Tuesday. The 12th and 13th is okay. COMMISSIONER KONIGSBERG: So it’s going to be the 12th and 13th. MS. BYRNES: Anything else before I move on to the two last items? Patricia? MS. SOSA: About Puerto Rico, you mentioned the possibility of arriving early the 26th. Is that something that you need to talk about? CHAIRMAN OSBORN: I don’t think that’s a very realistic possibility, quite frankly. The reason we moved it to Tuesday-Wednesday was because the Monday is the end of the Thanksgiving Day travel and is already very difficult; and I think that most of us live somewhere where to get in before the late afternoon of Monday would be very difficult to do without getting smack into the end of the Thanksgiving travel at the beginning of Monday. That was why that timing got changed in the first place. So I think that extra half-day unfortunately is awfully hard to come by because of the exigencies of the Thanksgiving proximity there. The Sunday of Thanksgiving ah MILLER REPORTING CO., INC. $07 C Suect, NE Washingcon, DC. 20002 (202) 546-6666 252 lweekend is the heaviest travel day in the year, and the Monday tends to have a little overrun on that. So that we are still in a very heavy time, and we are avoiding the Sunday just to have any feasibility at all. MS. SOSA: So it is the 27th and 28th. I am just asking because I heard them saying, and Eunice mentioned something. COMMISSIONER DIAZ: I was reacting to Larry’s comment, and will two days really be enough time for the hearing and the site visit. My impression is that we’re cutting it short to get the reaction of people just to dealing with care and treatment issues we just finished; that the time is rather short in terms of the time. MS. SOSA: And the morning of the 29th-- COMMISSIONER DIAZ: What do you mean? MS. SOSA: Instead of arriving early, leaving late. COMMISSIONER KESSLER: I don’t know what the problem with the 29th was. COMMISSIONER AHRENS: I think we do need to have a decision on this because if we are getting in late on the 26th, when we make that reservation I think we’re going to have to make it soon to get the dates. When do we come back, ah MILLER REPORTING CO, INC. 507 C Street, NE. Washington, DC 20002 (202) 546-6666 253 we need to know that, so can you tell us?h MS. BYRNES: We had scheduled those two days. What is the consensus of the group? Do you want to stay an extra night and an extra morning to ensure that there is enough time to look at enough issues and enough sites that would give us the kind of information we want? COMMISSIONER JAMES ALLEN: Do you have an agenda so far on what we are going to be doing there? MS. BYRNES: There is an advisory committee similar to the one that was established in Los Angeles that will be reporting to Eunice, Patricia and myself at the end of this month. MS. SOSA: At the end of next week. COMMISSIONER JAMES ALLEN: Okay. So we’re not really sure when it is going to be over on the second day. COMMISSIONER DIAZ: It will be lengthy, and let me tell you why. The group at the preliminary meeting had wished--and Patricia, you can add to this--had wished that we not concentrate our attention-- A VOICE: We can't hear you. COMMISSIONER DIAZ: The planning group locally had passed a message to us via Patricia that we not only look at ah MILLER REPORTING CO., INC. 507 C Street, N.E. Washington, DC, 20002 (202) $46-6666 254 San Juan, but that we take the time to cross the island to another very heavily impacted city, that of Ponce. If we do that the second day, it is going to be a little too late by the time we come back to catch planes. So that is the issue, that if we started at 1:00 on Monday, or could extend through the morning of Thursday, it would give enough time to go the second day to Ponce. COMMISSIONER JAMES ALLEN: If you extend through the morning--let’s say it runs until 11:00 or 12:00 noon, that really means the earliest you can book out would be 2:00 or 3:00 in the afternoon, probably. COMMISSIONER DIAZ: One, two, three, four, five. The latest you can get out is five. In fact, the latest plane out of San Juan is 5:55. MS. BYRNES: Is that the consensus? Chances are most of us would stay over that evening, given that we would be traveling to Ponce and be getting back late. Do you want to use the time the next morning? COMMISSIONER DALTON: I’m sorry--are you saying that we can’t get out of San Juan after 5:00 in the afternoon? COMMISSIONER DIAZ: Five fifty-five is the last plane. In other words, there are no planes leaving 8:00, ah MILLER REPORTING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 346-6666 255 9:00, 10:00, 11:00, 12:00, around-the-clock. COMMISSIONER AHRENS: Some of us have to change in Miami, too. COMMISSIONER JAMES ALLEN: I’m just concerned about-- MS. SOSA: I think there are planes leaving later than 5:00 from San Juan to New York and other parts of the States. MS. BYRNES: Then I think we should make the decision based on whether or not-- COMMISSIONER DIAZ: I’ve got it right here. I checked that very carefully. MS. SOSA: From San Juan to Washington, yes, or Baltimore or Dulles; but from San Juan to New York, you can take planes later than 5:55. COMMISSIONER DALTON: I guess I’m concerned that the more time that we allow, the more it is going to get filled up. One thing I have learned over the course of this Commission is that sometimes, less is more. So I am just a little bit concerned that two and a half days becomes three, and I just wanted to express that. COMMISSIONER AHRENS: Excuse me, but for some of us ah MILLER REPORTING CO., INC. $07 C Street, N E. Washington, DC 20002 (202) $46-6666 256 who have to change planes in Miami and go to the Midwest, if we come out on the 28th, it probably means that we'd have to leave about 2:00 in the afternoon, anyway, so that leaves a day and a half. That is why I was just asking are we going to stay through the 28th, and in that case, we make our reservations on the 29th--or not? COMMISSIONER DALTON: So you are talking about having meetings on the morning of the 29th, in which case we're back in the same fix on the 29th. COMMISSIONER KESSLER: No, you’re not. If you do meetings the morning of the 29th, those meetings would be in San Juan, not in some outpost. MS. SOSA: Can I give my recommendations, knowing the island well and some of the things they have in mind? Basically, what they have in mind is a hearing the 27th, which is a Tuesday; site visit out of San Juan the 28th; and then, if we stay that Thursday morning, we can do site visits to some facilities in San Juan, and I think it would be a really comprehensive if we do it that way. If we only stay two days, then we have to do site visits in a hurry in San Juan on Thursday and then go to the island--we can do it, we can work it out, but I think it ah MILLER REPORTING CC , INC. 307 C Street, NE. Washington, DC 20002 (202) 546-6666 257 would be too much, and Harlon is saying I think we would feel overwhelmed and too tired. But if we do it over two and a half days, I think we can do it in a more relaxed fashion and enjoy it more. COMMISSIONER DIAZ: My next question is if we are true to our commitment of two days, can we get out of San Juan by 6:00 on Wednesday--the answer is no. I can tell you that. COMMISSIONER JAMES ALLEN: There were one or two flights that left as late as 8:00--New York City, you could get to, Miami--but essentially any of the other major cities, you are right, by 5:30, 6:00, there is the last flight out.h COMMISSIONER DALTON: One other thing I thought about was that there will be translation, which lengthens the time for virtually everything that we are going to be doing, I take it. So that it in fact will take us more time--there will be simultaneous translations-- MS. BYRNES: Right. Site visits would not be that way, but for the hearing situation, simultaneous translation, yes. COMMISSIONER DALTON: Okay. MS. BYRNES: My recommendation is for us to plan ah MILLER REPORTING CO., INC. $07 C Sureet, NE Washington, DC 20002 (202) 346-6666 258 two days that go through the second day. So I would ask that people not assume that they make a 5:00 flight, which means they have to be back to get their luggage by 2:00 and out to the airport by 3:00. Plan that we will have those two days scheduled right through to 5:00 and that transportation-wise, you may not even be in San Juan by 5:00; we may be coming back from Ponce. But I think we should look at whether or not anything is scheduled for that third day. You may want to just use that as a travel day or, Harlon, for someone like yourself or another person who would fly into New York, you could leave that evening. But I think we should look at let’s look at putting two full days together that are enriching and comfortable and not racing around the island so that we have just been there and not really digested or gotten anything of quality. But plan on staying through that day. For most of us, that means staying overnight and leaving the next day. We might be able to look at some things the next day that would be optional if people would like to go--but that means people who could leave Wednesday evening could leave. But I guess I would ask that you commit to being in ah MILLER REPORTING CO., INC. 507 C Sueetr, NE Washington, DC 20002 (202) $46-6666 259 Commission activity through 5:00--and I will let you know if it is going to be later than that. That would be my recommen- dation at this point in time. Quickly, two more things. Frank is trying to organize the administrative travel vouchers, reimbursement, what works best for you, what works best for us. I will keep you up to speed, and Frank will as well, as we really get this cleaned up and have a process that works a little bit more smoothly than some of the times we had last year. One of those ways is we have a bunch of blank travel vouchers. If you would like to go ahead and sign them while you are here, that may facilitate for many of you the process of sending in the receipts to Kansas City and getting reimbursed. I have these here. ‘The last thing is the Annual Report is in, but it’s like a bad government joke--if you give it to the government, there is usually a mistake that comes back. Page 6 is also page 60. So there is a fairly serious error. It came back, and page 6 is page 60. It shows up as page 60, but it shows up twice. My suggestion at this point in time is that at the expense of the Government Printing Office, have them print an ah MILLER REPORTING CO., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 260 errata sheet that says that this was inappropriately done, having this put in here, but not at Commission expense. I think the Government Printing Office should do that. COMMISSIONER DALTON: Is the substance of page 60 not there? MS. BYRNES: It is in twice. Page 6 was supposed to be a blank page. COMMISSIONER DALTON: Oh--page 6 was supposed to be a blank page. So nothing is missing. MS. BYRNES: Nothing is missing. We just have a page that has been inserted into the report twice. As I said, my recommendation is that we put an explanation on a piece of paper inside the book. But I wanted to alert you to that before we distributed it. We are now 10 minutes over the 4:30 adjournment time, but we are 20 minutes before 5:00. Do people want to spend the next 20 minutes discussing this morning, or would you like to schedule that time tomorrow? My part of the agenda is over, but it did go into the time that we had suggested for discussion. COMMISSIONER KONIGSBERG: I say we leave it to 3:30 tomorrow. ah MILLER REPORTING CO , INC. 507 C Sueer, NE Washington, DC. 20002 (202) $46-6666 261 COMMISSIONER GOLDMAN: I say we do it now. I mean, if I were at work, I’d still be at work. MS. BYRNES: Discussion of issues that were raised this morning. Let’s take a five-minute break, meet back here and go until 5:15. {Short recess. ] CHAIRMAN OSBORN: Let’s regroup for a few minutes. I think it would be helpful to find out if people have compelling thoughts at the end of the first day of these hearings. Charlie and I had a chance to talk at noon and felt quite good about the quality of the input from the vantage point of what we do with the rest of our time, but I was curious if anybody had any comments about what they had heard and any questions that got sharpened by this so that we can be listening for it tomorrow. COMMISSIONER KONIGSBERG: I had one thing I wanted to just amplify on. The ILM Report, "The Future of Public Health", I guess it is a little frustrating to have Dick Remington in here and kind of whet the appetite when I know from having read that report repeatedly and being involved in ah MILLER REPORTING CO., INC. 507 C Sweet, N.E Washington, DC 20002 (202) $46-6666 262 a lengthy study group in Kansas, looking at the system, how much we missed. And I guess my plea to the staff would be if you haven’t already, do some serious staff analysis with that report, and perhaps at some other point the Commission could talk about it in a little more detail. One of the things that struck me with my fairly new Midwestern hat on is in some cases the absence of infrastruc- ture in the Midwest at the local level. And I think the gap between Sarasota County and Columbus, Ohio to Haskall County, Kansas, a county that has no health department--by statute, it has a health officer, but it doesn’t have a public health presence the way we would know it--that is not an uncommon Situation. And like Ohio, we have far too many health departments. So I think in our thinking that we need to realize that that public health presence, one of the reasons it isn’t effective in a lot of areas is because it is not there. Personally speaking, I have about come to the radical conclusion in Kansas that the State Department of Health and Environment ought to quit calling certain entities health departments until they meet certain minimum standards. And you'd have to be there to see a nurse who mainly does home ah MILLER REPORTING CO., INC. 507 C Street, N.E Washington, DC 20002 (202) 546-6666 263 health to make a profit, to keep afloat, a little clerical activity, and they give a few shots, and that’s about it-- that is not going to get it done. So I bring this up not to say that is typical all over the country, but it is a midwestern phenomenon, and I just think it needs more analysis. CHAIRMAN OSBORN: One addendum to that that we were talking about over lunch was the fact that schools of public health, as we train people into this career path which, as you have heard, can be quite exciting and in fact very challenging, both at the faculty and at the student level we have had a tremendous drop-off in the number of physician- trained or even health care professional-trained students who are working toward the master of public health degree. So as you think about the overall issue and the role that is being described--defaulted role if not planned-- for primary health care and so forth, I am sure that to the minds of people who are not living this, it comes to mind that we’re talking about doctors who have some public health training. No, we are not. We are talking about people with public health training, a decreasing minority fraction of whom are physicians, nurses, or have other health training. ah MILLER REPORTING CO., INC. $07 C Suet, NE. Washington, DC 20002 (202) 546-6666 264 So the problem doesn’t sound as bad as it actually is, never mind the administrative structure, but just in terms of background and training, much of this infrastructure that we are about to lean heavily on does not have the health care professional training to fulfill the roles that are being described for it. COMMISSIONER AHRENS: Let me piggyback on that a bit. Ours is a county that hired recently a new administrator for our public health department, and he did not hire a physician. In fact, we did not hire someone who actually had a master’s in public health. There was a lot of concern in the community when we did that because we weren't following sort of acceptable public health practice. But I do want to say that in this day and time, as I look at the situation, what we need given the limited kinds of resources that we have, frankly, are topnotch administrators who have a background in the field of health and public health, but not necessarily that M.D. that goes with it. Our experience has been very, very positive with this approach. The expertise that is needed is hired or purchased or whatever to get that kind of input into our ah MILLER REPCATING CO., INC. 507 C Street, NE Washington, DC 20002 (202) 346-6666 265 structure. But I know that this is happening, June, and I think it is a trend. I don’t know whether we are going to reverse that--I don’t even know if we should reverse it. But it is not all bad. CHAIRMAN OSBORN: No, I certainly don’t mean to say that it is, and I think in a community that is as progressive as yours, that is probably more reasonable way to go than to try and combine the training; it is certainly at least as reasonable. But what Charlie is talking about and what pertains in a great many places, particularly with relatively thin populations, is such an attenuated structure that ail I am saying is you must not assume that somebody who is a public health professional has health care professional training, physician or nurse practitioner level. And it is only in the context of this business of actually de facto delivering a lot of the health care that I am bringing that up; it is not that I think it is good or bad in any other way, but I just find outside the world of academic public health that people are inclined to extrapolate--that you are talking about a public health person, so you are talking about a physician. And in the large majority of instances, that is not true. ah MILLER REPORTING CO., INC. $07 C Streee, N E. Washington. DC 20002 (202) 546-6666 266 COMMISSIONER KONIGSBERG: Just one follow-up on the more general question so I don’t get into a debate with Diane about appropriate preparation of people who head health departments. There are different ways to skin a cat. Public health is multidisciplinary by nature. It is physicians, both clinical and administrative. It is nursing, both clinical and administrative. It is nutrition, it is social work, it is health education, it is laboratoria- ns, we heard this morning. The ILM report takes, I think quite frankly, the schools of public health to task, as June is aware. I think the weakness in that report is that it made the really ridiculous assumption that all public health training does or should take place in a school of public health. That is not reality. Training for public health takes place in lots of places. I brought this up when we had the health care personnel session, and I appreciate the fact that a tiny paragraph did appear in the third report, but did not even begin to do justice, and we really had not had any testimony to the preparation--epidemiologist is another one. These people don’t happen by accident. I think this is a somewhat ah MILLER REPORTING CO, INC. 507 C Street, NE Washington, DC. 20002 (202) 546-6666 267 different question. The other last point that I’d like to make that I'm not sure got fully clarified is the role of public health in direct service delivery, medical care. If you ask public health people, you will get different opinions. The ILM report thought we ought to get out of the business as soon as possible; Dick Remington made that clear today. If you ask other people in public health, they will say no, that’s an appropriate role. I think that what we all ought to agree on in public health is the assurance function. Assurance is a positive word rather than a negative word, and it is not “insurance"--it is “assurance”. It calls for a leadership role, and my experience has been far more difficult than setting up a clinic. You can find anybody who can set up a clinic if you’ve got the money. People love to do that. But getting the community onboard to cooperate and to do what it is that somebody needs to do is far more difficult because of the negotiation. So I think there is more and more an emerging role in public health for that role to see that it is done. It is a very key point in the ILM report, and some of us are more ah MILLER REPORTING CQ., INC. 507 C Sueet, NE Washington, DC 20002 (202) 546-6666 268 inclined to do direct service delivery, and others are more inclined to get someone else to do it, but it all comes down to the same point. COMMISSIONER GOLDMAN: I think all of us come from different States and different jurisdictions which organize their public health systems differently. In New Jersey, we have hundreds of public health departments locally, but I’m not sure what they do beyond inspecting restaurants. But all the functions involved in things like dealing with AIDS, HIV infection and STDs are all done at the State level, even though there are local health departments, and in some States there are even different ways of organizing, which probably relate more to historical and political antecedents than jprobably any rational system of delivery. And I think ultimately under the system of government that we have in which the only two Constitutionally constituted arenas of government are States and the Federal Government that ultimately, however the State wants to organize it, essential- ly the provision of local public health is a State respon- sibility. Whether or not it wants to centralize it out of its State function or whether or not, because of historical or political or economic reasons, it wants to allocate or ah MILLER REPORTING CO., INC. 307 C Sureet, NE Washington, DC 20002 (202) 546-6666 269 delegate that responsibility to local regimes, it may do so in a variety of ways. It may say big cities, we’ll give that responsibility to, but small cities, we won’t. There are probably 50 different examples of how that is done. But I don’t think we should get away from the idea that ultimately, the local public health response is essen- tially a State responsibility, not a local community respon- sibility ultimately in terms of doing it. The second thing that struck me in terms of what we heard today was the contrast and difference between what we heard should be going on and particularly what those of us who were part of Scott’s working group and our hearings in Boston and Dallas and Seattle, in terms of how far that is from what is in fact going on, and that gap and disparity between--but there seems to be some general agrement. Whether or not you want to talk about the mission of public health as a provider of last resort or whether or not you think that it has a real role in terms of providing care, it isn’t doing either in reality. That contrast struck me. The agreement between all of them in one way or another, all of the people we heard this morning, in terms of what the public health system ought to be doing, at least in ah MILLER REPORTING CO., INC, 507 C Sureet, NE. Washington, D.C. 20002 (202) 546-6666 270 certain general ways, and the contrast with what it really is doing is what struck me about today’s hearing most of all. COMMISSIONER AHRENS: I don’t track what you are saying, Don, on the basis of what I know. I am sorry, but I don’t track that. COMMISSIONER GOLDMAN: You don’t track-- COMMISSIONER AHRENS: Well, you are saying that what we were told today was what they ought to be doing, but what you know is that by and large there is a great gap there between what ought to be and what is. I heard part what ought to be, but I also heard what is. And I guess, based on my experience with counties, I’m not quite seeing what you are seeing. COMMISSIONER DALTON: Yes, Don, I think you probably overstated your case. The fellow from Columbus, for example, gave impressive testimony. COMMISSIONER AHRENS: But I think Sarasota as well. COMMISSIONER GOLDMAN: And there are some places where in fact things are functioning. I think one of the keys in terms of what is functioning is where in fact public health people have in fact asserted themselves. CHAIRMAN OSBORN: But I think one of the points ah MILLER REPORTING CO., INC. $07 C Sereer, N.E. Washington, DC 20002 (202) 546-6666 271 that was made even in the best of cases was that now you double the number and see whether that works, and I think that that is what is uniform, is that you can see things functioning well or not at the moment. But I don’t think that we have heard much testimony that says that two- or fourfold the number being imposed on the public health system right now will leave it functioning intact even in the best of circumstances, and I think that may be worth something-- COMMISSIONER GOLDMAN: Yes, and certainly it is not functioning very well in Texas and Arkansas and Louisiana and Oklahoma and Mississippi and even in Georgia, in certain parts, there seems to be some bandaid solutions. COMMISSIONER AHRENS: So what are you saying? COMMISSIONER GOLDMAN: What I’m saying is that we hear on one hand the idealized system of how things work and face the reality of things not working. COMMISSIONER AHRENS: But let me press you again. What does that say to you? What are you saying by that statement? COMMISSIONER GOLDMAN: What I’m saying by that istatement is that we’re hearing a lot of bull. That’s what I hear, to put it mildly.’ Maybe I’m hearing the wrong thing. ah MILLER REPORTING CO., INC. 507 C Sereet, NE Washington, DC 920002 (202) 546-6666 272 COMMISSIONER KONIGSBERG: Don, let me try to respond to that because I am pretty well-acquainted with each of the individuals who testified this morning, and it is not bull. We all come from an ideal, those of us who are trying to do a good job, and we will never meet that ideal. That is reality. Mark Magenheim mentioned his frustration with trying to take care of the prenatals. His 8-week waiting period was 17 weeks. In my county, we literally had 4,000 prenatals in Broward County we were responsible for. When you hear about public hospital systems breaking down, or you hear the burdens on this and that, public health is equally burdened. And I think for those people to come in and tell us what they think ought to be is a plea for support, not trying to sling a line of bull. You did hear from two very successful health departments. They were picked because they could express the ideal. The reality of these hearings as opposed to site visits is that in order to get anyone who is articulate enough to tell us what ought to be done, you’ve got to talk to somebody who in fact knows what ought to be done and is trying their best to do it. ah MILLER REPORTING CO., INC. $07 C Street, N.E Washington, DC 20002 (202) 346-6666 273 I would argue in Georgia two ways--and I think I stated at our retreat that I saw our visit to Way Cross in Macon as one of the two or three things that impressed me the most. On the down side, I was impressed with the lack of Federal and State support for what was going on. Nobody pressed Jim Allen about that. He was down there, hosting us. On the up side, I was impressed that Ted Holloway in par- ticular--who happens to be one of the more outstanding local health officers in the country--why he stays down there is beyond me--knew the characteristics of this epidemic. He had done his assessment. He had developed some policies, and he was attempting assurance under extremely difficult circumstan- ces. And unless we can make a silk purse out of a sow's ear, there is not much else that guy can do unless he is given some support. Now, I would argue that these folks are making the same plea, but remember that AIDS isn’t the only issue that impacts us. And I truly believe in Ft. Lauderdale that other things got sacrificed. I think that the shifting of my time- -let’s put the blame where it belongs for four years there--I truly believe when reporters would ask me, "How much time do ah MILLER REPORTING CO., INC. 507 C Street, N.E Washington, DC, 20002 (202) 546-6666 274 you spend on AIDS," and I told them truthfully, 50 percent of my time--this was before AIDS Commission--that that had a down side on other things. There is no question about it. There was less time for other things, including a rising infant mortality rate, a syphilis rate out of control, not very good assurance for primary care for people, and a crumbling financial base for that health department. And somewhere along the line you wake up one day and ask, "What in the hell am I supposed to be doing here?" So, no, I don’t think it is a line of bull. It is no more imperfect than the rest of the health care system. And the reason some of us wanted it brought up is to show that that is both a strength and a weakness in our system, and that is why I think a careful reading of the ILM report-- the ILM report is very doomsday in a lot of ways; a lot of people don’t like the bad news. COMMISSIONER JAMES ALLEN: I think the point is well-taken that we did not hear from any health department that was totally nonfunctional or a health department that didn’t even exist in a county where the services simply aren’t there. We heard from some health departments, local health ah MILLER REPORTING CO., INC. 507 C Street, N.E. Washington, DC. 20002 (202) 546-6666 275 departments in particular, that I think have really a superb program, and we also heard very clearly that given the anticipated growth of the epidemic in the next several years, particularly in the service arena, they probably are not going to be functioning. And I think that is a real concern. The question is what can we do about it. The other question that I think needs to be addressed is what might be done; are there any models in terms of a State and/or local response to try to address the issues prior to or early in the AIDS epidemic. Let me suggest the only model that I am aware of is the State of Rhede Island. And that really goes back long before the AIDS epidemic, but the State health department essentially decided that the county health department system Simply was not functioning. It was a geographically small area, population just under one million people. They decided we are going to do away with the local health department structure, and there will be a single health department for the State of Rhode Island, and they would take over, provide the services, provided the surveillance, the epidemiologic investigation, the restaurant inspections and all the rest of it for the entire State. ah MILLER REPORTING CO., INC. $07 C Street, N.E Washington, DC. 20002 (202) 546-6666 276 But I am not aware of any other State that has effectively stepped in--and I haven't looked at it, so it is an absence of information; it is not an indictment, and there may be other models--where the States have tried to provide the services for the areas that simply are nonfunctional at the present time. And I think maybe that is something that staff could spend a little bit of time looking at, because if the purpose of the Commission is to come up with recommenda- tions and propose solutions, that I think could be very helpful. COMMISSIONER ROGERS: I don’t want to make peace if there is no peace here, but we heard eloquent testimony this morning, and I thought Don was saying that, too. And here are a lot of selfless, hardworking people; they haven’t got the resources; they are saying very clearly you put it in AIDS, and you drop diabetes and so on. We heard some very important stuff from some wonderful people, and that is what we’ve done throughout. All I am saying is I don’t think you need to defend what we heard. We heard from some eloquent people who are struggling to do their very best, and they haven’t got the resources, and they are in essence saying we are going to pay 100-fold ah MILLER REPORTING CO., INC. $07 € Street, NE Washington, DC 20002 (202) 346-6666 277 for it later if we don’t get them in now. And Don, I am putting words in your mouth, but in essence I think that is what Don was saying, too, that there is a big gap between what they know they’d like to do--it isn’t that they don’t want to or that they aren’t trying to--and what they’ve got the resources to do. It was very powerful testimony, and I thought, goodness, we’ve got some wonderful blueprints, and we did see some examples of what you can do with some limited circumstan- ces. And I hope we damn well say they ought to have more. COMMISSIONER DIAZ: I guess what I got out of this morning’s discussion was really the way that the role of public health has evolved in response to the epidemic and to different populations and the demand on public health services. A couple of the speakers talked about the particular populations that use their public health services, and I can just tell you in my short lifetime as a public health practitioner--25 years as such--I saw the Los Angeles County Health Department go from a traditional public health setup, in other words, the traditional functions, to a totally merged ambulatory care/primary care and public health merger, ah MILLER REPORTING CO., INC $07 C Street, NE. Washington, DC 20002 (202) 346-6666 to the disassembly of that into very specialized AIDS care within comprehensive health centers that were large, where you could gather the kind of professionals June is talking about, that were beyond public health, clinically trained and sharp and being able to not only diagnose but treat, with appropriate hospital linkups; then, leaving the old tradition- al public health centers to do again VD and STD, tuberculosis, maternal and child care, and vaccination, and environmental health. I have seen the evolution So in my short lifetime, of that system take many shapes. Now, what caused that? Some of the speakers this morning talked about the forces that shaped that. I can tell you very frankly, based on my profes- sional interaction with that system over the past 25 years, that that was really community need and demand. In one area of the county, the San Gabriel area, that does not have a public hospital, the public health center became not only the place of choice, as one of the physicians said this morning, but the only place where the community went--a one-stop place for entrance into the primary care system and the traditional public health roles. ah MILLER REPORTING CO., INC. $07 C Street, NE Washington. DC 20002 (202} 546-6666 279 But as this epidemic has placed so many demands on the public hospital and on other systems of health care, and there are so many persons who are uninsured, and with the particular populations that are affected, we have a tremendous burden in these centers that just cannot at this time be met because of the enormity of this epidemic. So as each speaker came up, I was just thinking in my short 25 years in public health, you know, I thought I had seen that whole spectrum of evolving and shaping of this system due to pressures of the epidemic, demands of the population, inability of other systems to take on new roles. But at one time, Charlie, there was public health and primary care, ambulatory care, all merged under one roof. It was very difficult for a long time to hold that and be kind of a one-stop place to the entire population at need. CHAIRMAN OSBORN: As a very special prize for unusual accomplishment, I am going to give Harlon the last word because he was here early this morning. COMMISSIONER DALTON: I was actually going to yield the balance of my time to the Chair. [Laughter. ] COMMISSIONER DALTON: Actually, the only thing I ah MILLER REPORTING CoO., INC. 507 C Sueet, NE. Washington, DC 20002 (202) 546-6666 280 was going to say is that I did not find this morning depress- ing; I found the conversation around this table depressing-- Charlie, what you and June said was much more chilling to me than the testimony in terms of the sort of spottiness of the availability of public health services both in terms of structure and personnel. CHAIRMAN OSBORN: And I do trust everybody drew the appropriate conclusions about which is the leading school of public health. {Laughter. ] CHAIRMAN OSBORN: We’re adjourned. [Whereupon, at 5:15 p.m., the Commission proceed- ings were concluded. ]