Reprinted from Project Inform's PI PERSPECTIVE,
San Francisco, Ca.
Number 22, July 1997.
on Women & HIV
The National Conference on Women & HIV was held May 4-7,
1997 in Pasadena, Ca. While the conference intended to
unify various constituents of AIDS research, women
living with HIV, their care givers, providers, advocates
and the research establishment, it failed to provide
an environment to move forward a research agenda for
women with HIV/AIDS. Fundamentally, the meeting failed to
inspire and promote dialog, learning and progress.
Conference presenters were not given adequate guidance
and community participants, despite half-hearted
attempts to develop a mentorship program, were not
adequately supported. Unfortunately, conference
attendees arrived with a variety of expectations and
needs, most of which went unmet.
Despite the general disorganization of the conference, a few
advances in research on women with HIV were presented
that further our understanding of the disease. In
addition, the conference did bring together a good mix
of information on public policy, basic science, clinical
care and behavioral science.
From the out set of the conference, it was clear that many common questions
regarding women and HIV would remain unanswered. Very
little women-specific treatment data were presented,
primarily because the appropriate studies have never
been conducted. How do women living with HIV disease
develop treatment strategies and identify problems when
there is little or no information about how or if drugs
work differently in a woman's body?
This lack of women specific information drove frustration to
rage among the conference attendees. To harness that
rage and make it productive, the research community must
develop an agenda for advancing women's treatment
issues. One suggestion from the meeting, driven
primarily by the community, is to take the Women's
Interagency HIV Study (WIHS) and fold it into the Multicenter AIDS Cohort Study (MACS).
The MACS is a well funded and long running study which has been responsible
for much of our current understanding of the natural
history of HIV disease in gay and bisexual men. The WIHS
is the natural history study for women, modeled after
However, most women advocates have been largely disappointed in the program for reasons ranging from the administration to its scientific foundations.
The MACS has access to excellent researchers and
laboratories, whereas WIHS has a small fraction of the
funding available to the MACS, nor does it have the same
level of basic science research expertise. Combining
these studies would decrease the administrative cost of
the two different mechanisms, increase the resources
available to the WIHS and more fully round out the
information gathered to be relevant to more people,
Some find the idea of merging the WIHS and the MACS fundamentally wrong,
feeling that women deserve their own natural history
study that specifically addresses issues and concerns of
women living with HIV disease. The feeling is that there
should be increased funding specifically for women's
research. They maintain that women do not want to be
part of a study historically designed solely for men and
would not participate in a combined study. In addition
they maintain that women specific information will be
lost in the MACS.
Hungry for Information
Women on all sides of the debate are hungry for information not only
on the natural history of their disease, but also in the
cutting edge immunology and virology that is propelling
science forward. It may be that the proverbial "all our
eggs in one basket" approach is crippling us. First, the
strengths and weaknesses of the WIHS should be reviewed
and the focus narrowed to ensure that research is of
high quality and provides useful information. Second,
the MACS should be open to the enrollment of women.
Third, a formal assessment of what would be lost and
gained by devising a combined study, inclusive of men
and women, should be conducted. Ultimately we don't have
5 plus years to wait for data to guide further research
on women with HIV. Therefore, creative solutions such as
examining stored samples, need to be explored to help
inform the research effort. In the face of dwindling
AIDS research dollars, our ability to identify key
questions now will drive our success in future research
Project Inform has recently announced the commencement of Project WISE, a program focusing specifically on treatment information and
treatment advocacy for women living with HIV disease.
Project Inform will continue the publication of WISE
Words (formerly published by WISE in Atlanta), an
informational newsletter geared toward women's issues.
For more information, see the recent "In Focus" or call
the Project Inform hotline at 1.800.822.7422
Call Project Inform for a subscription to their excellent
newsletter, PI Perspective. There is a lot more
information about women and HIV and more reports from