TAG at 20: Early Campaigns
Reforming NIH AIDS Research, Boosting the Budget and Revitalizing the Basic Science of HIV Infection
Just as TAG's early examination of the failures of the institutional structure at the NIH led to reforms there in the following decade, so TAG's early emphasis on revitalizing basic science led to a surge in research to reveal how HIV causes disease, or pathogenesis.
This work began with T & D in the early 1990s when Gregg Gonsalves, who had recently left Tufts University and was working in Columbia University's famous Morgan genetics laboratory, proposed that the NIH hold a series of meetings on why certain people seemed to be protected from HIV infection despite repeated exposures (the so-called exposed uninfecteds), while others seemed to progress much more slowly to full-blown AIDS (the so-called long-term non-progressors, later dubbed elite controllers). This led to a series of scientific investigations in these unusual people who had some biological ability to resist HIV infection or disease progression.
In 1992 at the Amsterdam AIDS conference, alongside the presentation of TAG's recommendations for NIH reform, I gave a talk, "Pathogenesis + Activism," laying out the urgent necessity of activist and scientific attention to the unsolved questions of how HIV caused disease. It was still thought in the early 1990s that HIV lay dormant in some unknown parts of the body, before becoming reactivated and causing progressive immunodeficiency. Fauci had spoken of this unsolved medical mystery issue at the 1991 AIDS Conference in Florence.
In April 1992, I met with gastroenterologist Don Kotler at St. Luke'sRoosevelt Hospital in New York, and underwent a lymph-node biopsy. Immunologist Giuseppe Panteleo, then at Fauci's NIH lab, put it on ice and flew it to the NIH where Fauci, Jan Orenstein, and colleagues could examine my immune-system tissue to find out more about where HIV was hiding and replicating, and how it was damaging the body.
In Amsterdam I showed giant slides of the lymph-node biopsy to the International AIDS Conference audience, and described the uncanny and frightening feeling of being infected with a pathogen whose damage was devastating yet often for many years clinically silent. The slides showed an outwardly healthy lymph node (my CD4 count was 660 cells/mm3, and viral-load tests were in their infancy), but on closer examination, when stained with a dye that bound to HIV, they showed that -- in Don Kotler's inimitable phrase -- my lymph nodes were "crammed with virus." More magnified images, which looked like galaxies of stars in formation, showed singly infected cells producing a series of greenish viral particles.
Just as Peter Staley at the San Francisco AIDS Conference in 1990 inaugurated a new era in activist-scientist relations by calling for scientists and activists to work together -- just two months after ACT UP's "Storm the NIH" demonstration at the NIH campus in Bethesda -- so in Amsterdam I called for activists to work not only with clinical but with basic science researchers to unlock the mysteries of AIDS. I called for a revitalization of basic science, more funding, better communication between activists and basic scientists, and for basic science to use clinical samples from actual patients rather than the more artificial laboratory-adapted strains then in common use.
In spring 1993, while Congress was still debating the fate of the Office of AIDS Research, Gregg Gonsalves set out on a nationwide tour to interview some 36 leading AIDS researchers to better understand the issues they were facing and what they needed to make progress. Gregg's report, The Basic Science of HIV Infection: A Report from the Front, presented at the grim Berlin AIDS Conference where the failed results of so many combination therapy trials pushed the field towards despair, laid out a number of ways to improve AIDS research by making it more relevant to the people with the disease and not limiting it just to artificial laboratory viral strains and immune cells. He called on researchers urgently to investigate the so-called correlates of protective immunity to HIV, to examine the interaction of the virus in the living, complete host ("in vivo veritas"), to better understand HIV pathology in vivo, and to better understand the viral life cycle. He described the still-harsh conditions facing new researchers with the legacy of the Reagan-Bush funding crunch at the NIH and proposed incentives to bring new researchers and experts from other fields into AIDS research. Gonsalves's 1993 report still reads like a clarion call for what is needed to scientifically understand, defeat, and ultimately eradicate HIV.
Hand in hand with the OAR legislation, the Levine Committee report, and the reforms that resulted came a doubling of the NIH AIDS research budget in the first Clinton administration. In the second, Clinton and Congress agreed to double the NIH budget as a whole. Thus, from 1992 to 2002, the AIDS research budget at the NIH rose from $800 million to $2.4 billion. In 2012, it is about $3.1 billion, or 10% of NIH's $31 billion.
The OAR campaign led to a massive reinvestment in basic science, drawing a new generation of scientists into AIDS research. The NIH founded the Vaccine Research Center in the wake of the Levine Committee report. Other changes were harder to obtain, such as the coordination of clinical trials across multiple institute lines. In the end, Fauci and the institute directors gained from the OAR legislation as it helped sharpen the focus of each institute on what it did best.
This article was provided by Treatment Action Group. It is a part of the publication TAGline.
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