Important note: Information in this article was accurate in Spring 2003. The state of the art may have changed since the publication date.
Roundtable Discussion
Research Initiative Treatment Action (RITA!); Vol 8, No. 2 Spring 2003
One of the objectives of the Basic Science Workshop is to "identify from the work presented the implications for activism." In other words, how can advocates for people with HIV support the work of bench researchers? Although many are familiar with the work that activists do in HIV/AIDS-related social policy (eg, funding for state ADAP programs), advocates who work with bench researchers draw comparatively little public attention. Like the researchers whose work they support, basic science activists are a small and quiet lot. But without a vigorous basic science research agenda, progress against the virus—and especially the search for a possible cure—would stall.
So, what problems confront the laboratory scientists whose discoveries have brought us this far and whose efforts are essential to ending this epidemic? And how can activists help with the solutions?
A need exists to link bench researchers and community resources. Even in preclinical work, investigators sometimes require the help of human research subjects. This help is usually in the form of providing blood samples. But how does the basic science investigator who has no clinical practice find patients who are willing to help? In the United States, several organizations maintain close ties to both bench researchers and patients, such as Project Inform in San Francisco (projinf.org, 800.822.7422); Treatment Action Group in New York (aidsinfonyc.org/tag, 212.253.7922); Philadelphia Fight in Philadelphia (www.fight.org, 215.985.4448); and The Center for AIDS in Houston (centerforaids.org, 888.341.1788). These organizations can help link investigators with volunteers. The nascent AIDS Treatment Activists Coalition (ATAC) may also eventually be in a position to serve as a national clearinghouse for facilitating community participation in bench research (atac-usa.org).
Clinical investigators and laboratory investigators need opportunities to talk to one another. For basic scientists to appreciate fully the clinical implications of their work, they need feedback from clinicians. Yet there are relatively few meetings designed to facilitate direct communication between clinicians and bench researchers, and a paucity of clinicians, owing to the heavy demands on their time, attend basic science gatherings. However, 2 community organizations are providing national opportunities for clinicians and investigators to interact. One is the Immune Restoration Think Tank sponsored by Project Inform; the other is the Basic Science Workshop sponsored by The Center for AIDS. One-day meetings (perhaps on a Saturday) that include a clinical component may help to increase the number of clinicians who attend. Still, as one bench researcher put it, "Everybody is asked to do too much." The time constraints on both clinicians and bench
researchers are significant and no amount of planning will ease them all.
A lack of ready access to primates is frustrating the work of bench researchers. At this year's Basic Science Workshop, as in the past, bench researchers again expressed their frustration with the lack of available primates. For self-evident ethical reasons, some basic research (eg, terminal research) cannot be conducted on human subjects and must instead be done in the animal model. Research in animals not only furthers the understanding of HIV's pathophysiology, but also allows inquiry into experimental vaccines and treatments. The shortage of macaques, as well as structural barriers to accessing those that are available, is hampering the work of some basic scientists. Despite its significance, very few activists are working on this issue. Bench research may be facilitated by greater community participation in the process of allocating animal resources to worthwhile projects and in exploring ways to increase the number of available primates. Such
participation requires educational preparation and a significant commitment of time. Yet the absence of a variety of community voices in the call for primates may be slowing the speed of research.
Brenda Lein, from Project Inform in San Francisco, and Paul Simmons, RN, from Houston, facilitated the roundtable discussion at the 2002 Basic Science Workshop.
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Important note: Information in this article was accurate in Spring 2003. The state of the art may have changed since the publication date.
