Project Inform Perspective

Reprinted from Project Inform's PI PERSPECTIVE,
San Francisco, Ca.
Number 22, July 1997.
National Conference 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.

Few Advances

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?

Frustration

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 the MACS.

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, especially women.

Different Ideas

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 efforts.

Wise Words

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 the conference.