America Living With AIDS

AIDS), and the Agency for Health
Care Policy and Research. These
avenues deserve exploration, since the
merits of peer review per se are substantial and minimizing delay thus
becomes the strategy of choice.
The Commission recognizes that
efforts have been made at NIH to
facilitate and accelerate the dissemination of new information concerning
therapeutic interventions and alternatives for people living with HIV disease, including the AIDS Clinical Trials Information System and Clinical
Trials Alerts. In addition, the January
1991 workshop on expedited dissemination of information and the July
1991 meeting of a panel convened to
develop guidelines on distributing
information are clearly steps in the
right direction. The Commission
urges, however, that the worthy objectives of these panels be imbued with
the sense of urgency appropriate to
the status of people progressing
through stages of HIV disease and in
need of intervention.
Some individuals and communities
affected by HIV disease have experienced considerable obstacles to participation in trials, and the Commission
wishes to highlight them specifically.
Intravenous drug users are often
wrongly assumed to be unwilling or
unable to comply with research protocols. In addition, they often have other
health problems that complicate studies. Many lack access to primary care
and, therefore, the information and
opportunity to participate in a trial.

People of color have
concerns about exploitation that has taken place
in the research context in
the past. The Commission heard powerful testimony about the shadow
of the Tuskeegee syphilis
study and the significant
impact the remembrance
of this disturbing incident has had on views of
many African-Americans
regarding clinical research.
Much must be done about
the antipathy for research
felt by many people of
color. Increasing the
number of racial and ethnic minority health professionals would be an
important step toward
addressing this concern.
Every effort must be made
to identify, nurture, and
support researchers indigenous to the communities
they serve.
As mentioned earlier
in this chapter, women,
particularly women of
color, have traditionally
experienced difficulty in
qualifying for clinical trials. Obstacles to their
participation, including
the need for transportation and daycare, should

recent NIAID confere n
HIV infection and women,
some observers criticize
health officials and researche
for seeing women with AID
mainly as vectors for the
transmission of the disease to
their male partners or childr
rather than as a center
attention in their own rig
In a way, this same questi
hovers, unasked, around ma
discussions of AIDS in the
African-American communi
Many in the African-Amer
community wonder about
expressions of distress over
AIDS among Black Americans
in the face of such.:.
remarkable inattention to
and disregard for the health
status of the Black community
in general: "Are they interestet
in the spread of AIDS
because they are concerned
about us, or are they intereste4
in us only because they are
concerned about the spreadt
of AIDS?"
MARK SMITH, M.D., M.B.A.
December 1990

be carefully examined and addressed.
While the Commission recognizes
that lack of access to health care seri
101