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TAG at 20: Early Campaigns

Reforming NIH AIDS Research, Boosting the Budget and Revitalizing the Basic Science of HIV Infection

Spring 2012

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I. Reforming the NIH AIDS Research Program

First, TAG decided to deconstruct the entire AIDS research program at the NIH and to recommend reforms to ensure that all critical scientific questions were addressed. Just as ACT UP's Treatment and Data Committee in its 1989 Critique of the AIDS Clinical Trials Group had examined what studies were being done, who was leading them, who sat on the key committees, and who controlled the money, so in 1992 TAG's Gregg Gonsalves and I undertook a comprehensive examination of the NIH AIDS research program.

To do so, we went to the NIH campus in Bethesda, Maryland, and met with the staff of the weak and underfunded Office of AIDS Research (OAR), whose director was Anthony S. Fauci. Fauci was also the director of the largest NIH recipient of AIDS research dollars, the National Institute of Allergy and Infectious Diseases (NIAID). This created an obvious conflict of interest as well as a disincentive for OAR to probe too deeply into the spending decisions of other institutes, since it would seem to be one institute director criticizing his peers. We met with OAR deputy director Jack Whitescarver and his indomitable senior advisor Wendy Wertheimer. They provided us with valuable information about the OAR and its workings, and gave us key contacts at all the institutes. Gregg and I spent several months plowing through crates of documents sent to us by OAR, NIAID, and the other institutes. We read every NIH-funded AIDS research grant as well as the program descriptions supplied by the institutes.

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TAG's NIH report came out at the Amsterdam AIDS conference in July 1992; the conference had been moved from its original site, Boston, because of George H. W. Bush's ban on HIV-positive immigrants and tourists from visiting the United States.

We presented our findings at a press conference in Amsterdam on July 22, 1992. In attendance along with the press was Patsy Fleming, an AIDS advisor to New York Congressman Ted Weiss. Less than six months later after the election of Bill Clinton as president, new Health and Human Services Secretary Donna Shalala appointed Fleming as a senior advisor, a role that enabled her to push for TAG's recommended reforms inside the new administration.

Throughout 1992, a wave of activist colleagues from ACT UP and TAG died of AIDS, including ACT UP/San Francisco's Michael Wright in January, TAG's Scott Slutsky in May, artist/writer David Wojnarowicz in July, and ACT UP/New York's Mark Fisher just before the November elections. When we marched uptown on election eve, 1992, bearing Mark's body to Bush's New York City campaign headquarters in midtown, most of us felt that it would be only a matter of time -- and not much time -- before we too died of AIDS. But we were determined to push for changes in the research system so that later generations of the infected would have a better prognosis and a chance for a longer life.


The NIH Revitalization Act of 1993

Clinton's victory opened up a new path for NIH reform. President Bush had been holding back an overdue legislative renewal of NIH's mandate due to concerns about fetal tissue research -- which were to recur a decade later early in his son's administration with stem cells. Congressional leaders were determined that the NIH reauthorization should be one of the first bills to move in the new Congress. Indeed, Senator Edward Kennedy introduced the NIH Revitalization Act of 1993 as Senate bill 1 on January 21, 1993, just one day after Clinton's inauguration. The bill included all of TAG's recommendations from the July 1992 report in its title XXIII, which would lead to a sweeping reorganization of AIDS research at the NIH, the departure of Fauci from his post as head of OAR, and a long-overdue external scientific review of the whole program.

Despite opposition mobilized by Fauci and the other institute directors,who disliked the NIH Reauthorization Act's removal of their authority over AIDS research spending decisions to OAR, the bill passed in the Senate by a bipartisan supermajority (the bill was cosponsored by Kansas Republican Senator Nancy Kassebaum, one of a number of then-dwindling, now virtually extinct, moderate Republicans in Congress). In the House, Fauci's allies had time to mobilize. A number of professional societies testified against the bill. On the side of reform were Art Ammann and Elizabeth Glaser of the Pediatric AIDS Foundation, Mathilde Krim of amfAR, and David Ho of New York's new Aaron Diamond AIDS Research Center. The House passed the bill on a party-line vote, and President Clinton signed it in the Rose Garden on June 10, while TAG was in despair at the early results of combination HIV treatment studies at the International AIDS Conference in Berlin.


Bill Paul as OAR Director and the Levine Committee Report

In August 1993, Clinton named Nobel Prize–winning virologist Harold Varmus as the new NIH director. In turn, Varmus named NIAID immunologist William E. Paul -- a legendary basic scientist and author of the leading immunology textbook -- as the new OAR director in February 1994. Following TAG's recommendations from 1992, Paul convened a blue-ribbon panel -- dubbed the Levine Committee after its chair, virologist Arnold Levine from Rockefeller University -- to conduct an extensive external review of the entire NIH AIDS research effort. Numerous TAG members and other activists participated in this review, which issued its final report in 1996. The report recommended 14 top priorities for NIH AIDS research, including the formation of an NIH Vaccine Research Center (VRC), coordination of clinical trials, and the prioritization of basic science and pathogenesis research.

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This article was provided by Treatment Action Group. It is a part of the publication TAGline.
 
See Also
Coverage of the 30th Anniversary of AIDS
20 Years of Magic: How One Man's HIV Disclosure Inspired Others
More on the History of the HIV/AIDS Epidemic

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