AIDS Research at the NIH: A Critical Review

Yet the ACTG is but one eighth of the NIH AIDS program. A cure will never be tested by the ACTG unless
it's discovered somewhere else first. In this report we have turned our critical focus on the whole of NIH's
AIDS research effort. This is our first venture into a labyrinthine world. We largely followed a paper trail
of abstracts of extramural and intramural grants, budgetary documents and program descriptions in order
to get a picture of what's going on and offer some preliminary recommendations. The next step for us and
other AIDS treatment activists is to fan out and get a closer look at the undiscovered country of basic AIDS
research at NIH and at NIH-funded institutions around the country.
This is a new paradigm for AIDS activists. We have to familiarize ourselves with a wide range of
disciplines. For the institutes at NIH (other than NIAID, NCI and NINDS, who have a working relationship
with members of TAG and other AIDS treatment advocacy organizations) the first activist to come knocking
at their door is likely to come as a shock. Some pointers for both parties to ease the pain: For activists,
be willing to take the time to learn about the institute and its research, and the scientific fields with which
they are concerned. For the institutes, the establishment of community constituency groups for clinical trials
networks is a necessary prerequisite to community involvement in your programs. The manner in which
activists and advocates for people with AIDS can be involved in basic research policy is going to have to
develop on its own. We have already made significant contributions to clinical research. Be willing to work
with us and take our concerns into consideration. As NIAID has learned, if you can't beat them, bring them
in. Both sides will learn and profit from the experience.
Part II of this report, The NIH: A User's Guide, includes full descriptions of each institute's AIDS program,
with additional commentary and recommendations. If you would like to receive a copy, please send your
request and five dollars to The Treatment Action Group, 147 Second Avenue, Suite 601, NY, NY 10003
or call 212-260-0300.

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