Back to Basics
In the midst of cleavages on regulatory policies, activists could agree on one point: it was time for brand-new directions in AIDS research—new approaches that could arise only out of discoveries in basic science. Project Inform, for example, had begun assembling leading scientists and activists for periodic "Immune Restoration
Think Tank" meetings to brainstorm research directions in restoring immune system functioning. TAG had endorsed the emphasis on basic research in its report on NIH's AIDS research that it had presented in Amsterdam in 1992. A new report presented at the 1993 Berlin conference was all the more emphatic—and dramatic: "The world of basic research on AIDS is the final frontier for AIDS activists; it is here that we make our last stand," wrote Gregg Gonsalves. "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."
On the assumption that basic research, unlike clinical research, "has not had a powerful constituency to advocate on its behalf," TAG had conducted interviews with thirty-six researchers in the basic sciences—immunologists, virologists, and molecular biologists—most of them at work in academic settings. Above all, said Gonsalves, researchers stressed "the need to take basic AIDS research from the pristine in vitro laboratory setting to more difficult, but critical, work with wild-type HIV isolates and clinical samples, often using in vivo settings with animal models or humans." This was a restatement of the familiar problem—that scientists knew infinitely more about the structure of HIV than about how HIV causes AIDS. "In vivo veritas" was the slogan that TAG recommended: "Many of the interviewees criticized the relevance of in vitro work ('pristine, beautiful, irrelevant systems')."
The long-running activist critique of "purity," "cleanliness," and "elegance" was now applied to a new set of concerns: once again, as with clinical trials, activists were pressing for real-world "messiness" in place of pristine, ivory-tower science. Harrington had made this point in graphic fashion in a presentation the year before at the Amsterdam conference. Using slides of his own lymph tissue as backdrop, Harrington had demanded that scientists attend to "what is going on in our bodies, rather than exclusively in elegant and often artificial laboratory and animal models." With representational strategies such as these, activists could hope to bring the "politics of the body" to bear on the remotest regions of laboratory science.
Needless to say, not all clinical researchers were happy about the new activist agenda. "I think that … the basic science people now have the activist community in the palms of their hands," complained Donald Abrams in late 1993, "and they're going to run with it for a while. … I think it's too bad." However, activists were by no
means alone in articulating the need for a renewed emphasis on basic research. In May 1994, Gina Kolata wrote in the New York Times about a "new consensus … among many leading scientists that the nation's $1.3 billion AIDS research program is on the wrong track." The article cited an editorial just published in Nature by Bernard Fields, chair of the department of microbiology and molecular genetics at Harvard Medical School, entitled "AIDS: Time to Turn to Basic Science." "The focus on drugs and vaccines made sense a decade ago." wrote Fields, "but it is time to acknowledge that our best hunches have not paid off and are not likely to do so." Kolata also quoted Harold Varmus, the new head of the NIH: "Everyone agrees with Bernie's basic precept." And William Paul, the immunologist who recently had replaced Anthony Fauci as director of the newly reorganized Office of AIDS Research, said of the Fields manifesto: "We take that as our marching orders."
At the next International AIDS Conference, held in Yokohama, Japan, in August 1994, Paul made his priorities more explicit. This was the tenth annual conference; since the first such conference held in Atlanta in 1985, the number of cases of AIDS in the United States had climbed from about nine thousand to more than four hundred thousand. The number of AIDS cases around the world was now estimated at four million. "Realism was in the air," according to a commentary on the conference in Lancet ; and it was in a spirit of realism that Paul announced his intention to cut spending on clinical trials sponsored by the ACTG in order to put more money into the "revitalization and expansion" of basic research. Basic research was the "engine that will drive the entire AIDS research enterprise forward," Paul told the conference participants in his plenary lecture, reiterating the long list of fundamental, unanswered questions about HIV and the pathogenesis of AIDS.
What role could treatment activists play in facilitating the progress of basic science? Arguably, activists had a perspective on clinical trials that made them valuable contributors to the effort to conduct such trials smoothly and adequately. In focusing on basic research, however, it was less clear whether activists possessed a special vantage point from which to augment the production of knowledge. By one reading, the most activists could accomplish in this domain was to call for researchers to get on with it. For Martin Delaney, however, the point of Project Inform's Immune Restoration Think Tanks was not just to urge researchers to conduct basic research but to try to sketch
out, in discussion with them, the most fruitful avenues of inquiry. "We feel we have accomplished more and better research in this fashion than we ever could have achieved had we chosen to insist on being the researchers ourselves," said Delaney, suggesting a contrast with such earlier adventures as the "underground" trials of Compound Q.
To get a better feel for the conduct of basic research, TAG members actually began spending time in Anthony Fauci's laboratory at NIAID. "I don't think they make any pretenses that they're immunologists or microbiologists or virologists," said Fauci. "But they want to understand as much of the down-in-the-trenches science as they can." Activists didn't need to comprehend every detail or nuance of the research, Fauci explained, in order "to evaluate the broad strokes of the studies that come out." Activists themselves were forthright about the limitations as well as the possibilities inherent in this new approach. "I can't talk cell lines with the big boys, that's for sure, but who cares?" commented Derek Link of TAG. "That's not my role."
Aiding the activists as they negotiated relationships with the basic scientists was the relative accessibility and openness of these researchers. "Most basic scientists are very different than the star clinical researchers," explained Link. "These are people who labor away in a lab, pretty much in obscurity. They're thrilled to have somebody interested in their work. …" Brenda Lein of Project Inform echoed this observation: "If you think about it, it's sort of a lonely profession … because it's not like you go to a cocktail party as a scientist and people [say], 'Oh that's so fascinating, and what happened in the cell culture next?' And if you actually have someone who's interested, they're more than anxious to be able to talk about their work. … You know, there's not many people who get excited about epitope mapping. …"
Activists have cultivated these new relationships to bring the patient's perspective to the foreground in basic research—to force bench scientists to be fully cognizant of the day-to-day realities of sickness and suffering beyond the laboratory walls. In so doing, they have attempted to speed the process by which compounds move from the laboratory to testing in humans. "I probably wouldn't have four drugs in clinical trials without the activists having had some [effect on] me," commented Robert Gallo in 1994. Another way that activists influenced the knowledge-making processes of basic research was by performing a bridging, or "pollination," function, bringing together researchers from different specialty areas who were unfamiliar with
one another's work. Gallo, a participant in the Immune Restoration Think Tanks, agreed vigorously that activists have served as a "catalyst" that "forc[ed] people to communicate better" and to see beyond the limits of their individual specialty areas. Derek Link was also emphatic about the utility of this role: "There are numerous, numerous times when I'm talking to researcher X and saying, 'Researcher Y is now [working on such-and-such].' And [they say], 'Well, that's interesting.' And then there's some discussion about that."