aR tet OER ee eS 8 - wae ee A ants a ae ee TP Stree Mae YO —_— eee we eds eT The Balrimore ALTE “™'Sepremben I fo ™= RNATIVE National Commission on AIDS Reports to Bush Tells President That NIH Clinical Trials Program “In Serious Trouble” and Rural America Suffers an “Epidemic of Fear and Bigotry, Fanned by the Absence of Education and Knowledge” by Garey Lambert Echoing the predictions of AIDS ac- tivists over the past ten years, the National Commission on AIDS latest report (num- ber 3) issued on August 21st begins by stating: “The number of new AIDS cases diagnosed in rural communities across the country is growing at an alarming rate.” The report, titled “Research, the Work- force and the HIV Epidemic in Rural America,” finds that “in rural America, there is an epidemic of fear and bigotry, fanned by the absence of education and knowledge, surrounding HIV infection and AIDS... The fear of being ‘found out’... is almost as great as the fear of the disease itself.” One Commission member, Belinda Mason said, “I have seen rural America at its warm, supportive best and at its close- minded, bigoted worst.” The report, which deals with its subject in blunt, direct language, contends that America’s “war on AIDS” is grossly in- adequate on virtually every front. One man is quoted as telling the com- mission, “President Bush talks about those thousand points of light, but whenever people hear that I have HIV, the lights go out and I am in the dark.” The report documents “one infectious disease specialist from Macon, Georgia [who] expressed great concern about the spread of AIDS... he was currently seeing five families in which both parents are in- fected with HIV.” The report goes on: “The growth in the number of heterosexual cases of AIDS, in tural communities, particularly among women (many in their teens), is often at- tributed to the combination of crack co- caine, trading sex with multiple partners for drugs or money, and rising rates of syphilitic infections which seem to in- crease transmission of HIV infection. In the last five years, the number of new Cas- es of syphilis has increased tenfold in Sautheser Gearcia™ “To put it bluntly, the number of people involved in clinical trials (12,000) versus the number of people eligible for clinical trials is pitifully small.” Lack of access to primary health care, lack of health insurance, the failure of government to fund clinical care facilities, the dearth of adequate education, and the lack of adequate drug education, pre- vention, and treatment programs were cit- ed as critical problems. The Commission was also critical of the current HIV drug research and de- velopment effort. It noted that “while the investment of public and private funds into HIV-related research is impressive, and the fundamental biomedical know!- edge about HIV infection acquired over a very short time remarkable, the transfer of knowledge and treatment to those who are HIV infected falls far short of the mark. To put it bluntly, the number of people in- see AIDS COMMISSION REPORTS page 2 “In Serious Trouble” Continued from page | volved in clinicai trials (12,000) versus the number of peopie eligible for clinical mals is pitifully small, The ground rules for trials seem often too ngid to permit many from being included. People of color, women, and children are grossly under- represented in federally financed tals... Communication between researchers, peo- ple living with HIV infection and AIDS, and the public is not beng done well... [and] much of the blame for many of these problems rests with academic health cen- ters. These centers and the federal govern- ment must do better. A clear, crisp, well articulated clinical research strategy is simply not in evidence.” “Also grossly apparent is that many people seeking access to expemmental therapies are simply not getnng basic health care services for HIV-infection and AIDS,”. the report conunues. “Clinical trials cannot exist or be productive in a health care vacuum. They must be part of a comprehensive health care system which ensures adequate access and re- imbursement for ail kinds of care needed, including experimental therapies for HIV- infection and AIDS.” In its findings, the commission “agrees ; with all those who have called for a great- | €r pmority to research related to [op- | portunistic] infections without slackening | Fesearch on drugs to treat HIV infection | and AIDS.” It strongly criticized the “sizeable in- vestment” in the NIH’s AIDS Clinical Trials Group (ACTG), and pointed out that most FDA approved drugs for AIDS or opportunistic infections had been de- veloped outside of the ACTG system. “Heated cniticism about the limited number of participants in ACTG trials continues,” the report says. The barriers to participanon m the tals “demand ag- gressive attention and solutions, not more discussion” it concludes. The Commission supported the con- cept of community based drug mials. It cit- National Commission on AIDS Reports to Bush Tells President That NIH Clinical Trials Program ed specifically the NIH Community Pro- gram for Clinical Research on AIDS (CPCRA), and a National Hemophilia Foundation proposal about an “ACTG- without-walls,” It said, “the Commission strongly encourages continuation and ex- pansion of the CPCRA program tn parallel with the steps necessary to strengthen the ACTG’s.” “One impression needs swift settle- ment,” the report stated flatly. “We were... told that there currently exists a percepuon of conflict of interest for some invesugators who play an advisory role with the NIH in setting national AIDS re- search priorities. One witmess called on the Secretary of Health and Human Services “two mandate the full disclosure of all con- Sulting relationships these mvestgators maintain with pharmaceutical companies.’ This deserves a prompt response from the Department of Health and Human Ser- vices.” The Commission also found strong ev- idence of discriminatory practices by doc- tors, dentusts, and other health care work- ers. It called “shocking” the number of physicians who were “reluctant” to treat HIV disease. It addressed the “shortage of crisis proportions” of nurses, social work- ers, and other health care professionals working i AIDS, including volunteers, and urged that solutions, especially money, be found. Among its recommendations to address these problems, the Commussion also sug- gested that “a comprehensive community- based primary health care system, sup- ported by adequate funding and re- imbursement rates, is essential for the care and treatment of all people including peo- ple living with HIV infection and AIDS... The development of a comprehensive sys- tem with linkages to research protocols, existing community-based services, and longterm care facilities, based on a founda- tion of adequate support, is long overdue and should be a top priority for the federal government.”