AIDS Research at the NIH: A Critical Review

of Medicine (IOM)8 have pressured NIH to adopt a more coherent long-range strategy for its AIDS
programs. Strategic plans are becoming all the rage in scientific circles. Healy is working on one for
NIH (it's controversial). Even the ACTG Executive Committee wants one.9 In response to the IOM's
request, OAR began developing a "Strategic Plan" in late 1991. A draft was sent to the AIDS Research
Advisory Committee (ARAC) in November. Changes were incorporated, a new version printed (its main
innovation being a new title: in place of "Strategic Plan," it's now called the "Five Year Plan." That has
a nice ring, doesn't it?). Now it's out at the various institutes, under review by directors, AIDS
coordinators and senior scientists. Yet another draft will be reviewed over the summer, and perhaps
the final version will come out in the fall. Originally we intended to structure our report along the lines
of the "Strategic Plan." Close reading, however, revealed the much-vaunted Plan to be simply a
statement of ongoing programs. Some tiny programs - such as the NIDDK effort on wasting - were
covered at length, while larger ones - such as the multi-institute opportunistic infections effort - were
disposed of in a sentence or two. There was no sense of limited resources, of how to prioritize among
all the programs promised. The 40 objectives of the Strategic Plan are listed in Section III. Our
analysis focused on the institute programs and on their wish list for FY 1993, which was a much more
pointed and specific set of goals. Wish list priorities are listed by institute in Section II.
Limitations of our Approach. Our material is incomplete (yet overwhelming), our review preliminary,
our conclusions subject to change. Like the NIH itself, we have no completely "objective" means by
which to evaluate its programs. Many look good on paper (if they hadn't, they wouldn't have been
funded), but as anyone who's ever been to an ACTG meeting (or tracked its accrual, or read its
protocols, or sat on its conference calls, or marched in its halls to reform it) knows, the rhetoric and the
reality are poles apart. Just as it took several years for activists to infiltrate, activate and transform the
ACTG. Therefore, this report about the entire NIH effort can only be regarded as a first step. Programs
must be experienced to be known and improved. Scientific culture must sometimes be disrupted to
allow research constituents to play a role. NIH itself must centralize and monitor its AIDS program with
more rigor than it now does. In particular, the ultimate outcomes of funded research - whether
published clinical trials, changes in standard of care, peer-reviewed basic research articles, enrollment
quotas met, experiments carried out successfully, or, ultimately, progress made in keeping people alive
through understanding and then interfering with their disease - should somehow be scored.
Activist strategies which worked for clinical research will have to be adapted if we are to affect basic
research. Activists' claim to expertise in clinical trials came out of lived experience. Most of us cannot
claim the same for basic biomedical research. We can, however, only hope to serve as catalysts for
better and more coordinated work within the research realm, and as agitators with Congress and the
Administration for enhanced resources in the public realm. We hope that by documenting what is being
done we can depict the threat posed by the Administration's budget cuts, and that by showing what
more needs to be done we can mobilize the NIH to redouble its efforts and the Congress to fund them.
FINDINGS + RECOMMENDATIONS
Of the approximately $800M spent on AIDS research in 1991, $660M (82%) went for basic biomedical
research, including laboratory research (25.8%), neurology (3%), behavioral research (0.3%), drug
development and trials (42.3%) and vaccine development (9.4%). $133.5M (16.6%) was spent on
epidemiology, transmission and natural history studies, and $10.5M (1.3%) on nurse training and facilities
construction. Laboratory virology, immunology and animal model studies are relatively underfunded at
25.8% ($207M) of the total. Drug and vaccine development (preclinical and clinical) make up $416M, or
IOM. "The AIDS Research Program of the NIH.* 1991, p. 3.
John Phair, Chair, ACTG Executive Committee, memo "Re: Research Agenda + June Retreat " 1 May 1992.