Prepared by Gregg Gonsalves
From the Introduction
For over five years now, AIDS activists have focused their energies on clinical research and the drug development process, hoping to speed promising therapies for HIV infection to the people who need them. We have watched as AZT and then its cousins, ddI and ddC, have slowly crawled through clinical studies and on to the market. However, as the preliminary results of the British-French Concorde study have underscored, AZT and the other nucleoside analogues have only a limited usefulness.
Our efforts have not only been concentrated on treatments targeting HIV. In December of 1991, AIDS activists with ACT UP New York’s Treatment and Data Committee launched a campaign, Countdown Eighteen Months, to expedite research on the opportunistic infections that affect people with AIDS and the development of treatments and prophylaxes for these conditions. More recently, Project Inform of San Francisco has enlisted prominent AIDS researchers to take part in its Project Immune Restoration, a think tank devoted to developing immune-based interventions for people with AIDS. Despite all our efforts, new treatment strategies are desperately needed for people living with HIV, yet there are few new drugs on the horizon.
In 1992, the Treatment Action Group commissioned a study of the AIDS research programs sponsored by the U.S. National Institutes of Health. While AIDS activists had scrutinized the clinical trials networks run by the federal government in excruciating detail, no one had ever taken a look at the entire portfolio of AIDS research activities being sponsored by the NIH. TAG issued its report on the NIH AIDS research program at last year’s International Conference on AIDS in Amsterdam.
The report cited a lack of coordination and direction within the program as a whole, and proposed a sweeping reorganization in the management of the effort. In particular, the TAG report outlined a proposal for the strengthening of the NIH’s Office of AIDS Research to serve as the central coordinating and planning body for all research on the disease throughout the NIH. TAG’s proposal for the Office of AIDS Research, with the support of the Clinton administration, prominent extramural scientists, and members of Congress, has been included in the reauthorizing legislation for the NIH and will be signed into law in the near future.
However, even our best attempts to grease the wheels of clinical research and to bring a coherent management strategy to the administration of AIDS research as a whole will draw us no closer to a cure unless we make significant advances in our basic knowledge of its pathogenesis. Right now, we stand on the edge of a vast abyss of scientific ignorance which we must traverse if we are to develop rational therapies for HIV infection. The lives of millions of people worldwide hang in the balance. The world of basic research on AIDS is the final frontier for AIDS activists; it is here that we make our last stand.
We must forge a partnership with those scientists who have devoted their lives to studying the basic biology of HIV and the immune system and quicken the pace of discovery. This will demand new collaborative efforts and structures to link pathogenesis with clinical research.
The progress of science is often said to be incremental with as many advances developing out of serendipity as grow out of years of diligent experimentation (though controlled data are never cited to prove this assertion). The idea of accelerating the rate of scientific progress in AIDS research may therefore sound hopelessly naive. Nonetheless, TAG decided to ask thirty-six leading basic scientists working on AIDS in the United States to outline the scientific challenges for the field in the years ahead and the ways in which they thought their work could be better facilitated.
The following report is a synthesis of the comments of these researchers. It is intended to provide a survey of the state of basic research on HIV infection from the scientists at the bench. We also hope that the report will highlight the importance of the work being done. Unlike clinical research in AIDS, basic research has not had a powerful constituency to advocate on its behalf. The relevance of basic science to the lives of PWA’s is far less apparent than clinical studies which hold the promise of proving a new drug’s efficacy. Yet, new treatment options for people with HIV and a vaccine to protect the uninfected largely depend on the success of basic investigation. Finally, the report offers an assessment of the non-scientific obstacles confronting these scientists in their day-to-day work and practical recommendations to move these hurdles aside.