Over 400 HIV-positive women, out of an estimated total audience of 1,500 people, attended the National Conference on Women & HIV in Los Angeles. This meeting was vitally important because women comprise the fastest growing percentage of new HIV infections, but research into the epidemiology of and treatments for women with HIV lags seriously behind that of other groups impacted by HIV. "This conference is critical for all women in America, because while more and more women are being infected with HIV and dying of AIDS, they continue to be one of the most understudied populations affected by the epidemic," stated Alexandra Levine, M.D., co-chair of the conference and Professor of Medicine at the University of Southern California. "We are here to examine not only what we know, but what we do not know about women and HIV. We must change the course of HIV/AIDS research, treatment and prevention efforts so that women's issues receive equal attention."

Cases of AIDS in women in the United States have risen steadily since the epidemic was first recognized in 1981. But more importantly, the proportion of AIDS cases in women has increased consistently, growing from 7% in 1985 to 20% of new cases in 1996. In 1994, the proportion of cases in women attributable to heterosexual transmission surpassed the number attributable to injection drug use. In the United State, AIDS is the third leading cause of death among women 25 to 44 years of age, and the leading cause of death among African American and Hispanic women of that age group. The Centers for Disease Control and Prevention (CDC) announced recently that while HIV-related death rates among men are down 15%, deaths among women have risen three percent. And, there is a higher proportion of women of color infected with HIV: African American and Hispanic women account for 21% of the US population, but constitute 76% of cumulative AIDS cases nationally. AIDS has been the leading cause of death for African American in New York and New Jersey since 1987.

Drug companies have made huge strides in developing treatments to slow the progression of HIV infection. The availability of protease inhibitors and non-nucleoside reverse transcriptase inhibitors has given countless people living with HIV/AIDS new hope. But these new therapies have not necessarily been readily available to women. While the number of women participating in clinical trials for new AIDS products appears to reflect statistical percentages of women infected by the disease, women comprise only 12% (versus 18% of AIDS cases) of study participants in government-sponsored trials.

Historically, women have encountered unresponsiveness and reticence on the part of researchers, due in part to 21 year old restrictions on the participation of women of childbearing potential in the earliest phases of clinical trials. However, these FDA guidelines were lifted in 1993. Further, research involving women has focused on how to prevent vertical transmission of HIV to children or sexual transmission, not on how to care for the HIV-positive woman. Another large challenge in improving access for women has been in addressing issues of child care, transportation, confidentiality, disclosure and education.

During the early 1990's, there were growing concerns that the drug development process did not provide adequate information about the effects of drugs on women. In addition, there was a general consensus that women should be allowed to determine for themselves the appropriateness of participating in early clinical trails. As a result, the Food and Drug Administration has encouraged the inclusion of women in clinical trials, recommending a gender analysis of trial data. To obtain reliable data on women, recruitment and enrollment of women in clinical trials must be a high priority. Many of the National Institutes of Health (NIH) AIDS clinical trials not only include women as participants, but some have been designed specifically for women, investigating gynecological manifestations that occur in HIV-infected women. The NIH has also promulgated and implemented a more stringent policy and new guidelines concerning participation of women and minorities in all clinical trials.

New opportunities now exist to reduce the morbidity and mortality of HIV disease in women through early detection and treatment. Major ongoing studies of women include: the Women's Interagency HIV Study, a study conducted to identify the nature and rate of disease progression in women, characterize specific clinical manifestations in women and assess the effects of therapeutic regiments on HIV-infected women; and the Women and Infants Transmission Study, a multi-center study examining prenatal transmission and the course of infection in HIV-infected pregnant women and their infants. In all of these efforts, HIV-infected women, women with AIDS and other community representatives and advocates have been, and will continue to be, involved with the scientific community, not only in designing and conducting clinical trials, but also in planning and setting the scientific priorities of research programs. Investigations must continue into the development of female-controlled contraceptive products that prevent the transmission of HIV. Drug companies must be motivated to include product labeling that accurately and effectively conveys the product's relationship to the prevention and/or existence of HIV/AIDS. For example, oral contraceptives now contain an explicit statement that they do not provide protection against HIV and STD's. Pharmaceutical companies must collect and publish data about the effects of potent treatment regimens on women.

Society's current preoccupation on testing women rather than caring for women must change. The Coburn Amendment, mandating HIV testing of all pregnant women, should be replaced with legislation directed at providing comprehensive education and health care programs that inform women about treatment options and improve access to medical care. The ultimate goals of research programs must be the development of preventative methods, including vaccines, effective therapeutic agents and sustained behavioral interventions that will benefit all HIV-infected or at-risk individuals - men, women and children. The National Conference on Women & HIV brought together researchers, health care providers, policy makers and women infected and affected by HIV to share information on the latest developments in all of these areas of research. Organizers expressed the hope that "this conference will focus attention on these and other serious disparities between men and women with HIV, so that leaders across all disciplines related to HIV/AIDS can work together to re-double our efforts to close the major gaps in HIV/AIDS research, treatment, prevention and policy as they directly affect women.

Donna is a womens' Treatment Activist and editor of RITA!

970601
STEP9204

Copyright © 1997 - Seattle Treatment Education Project, 1123 East John Street, Seattle, WA 98102. (206) 329-4857 or (877) 597-STEP [7837] (toll-free, valid only in the Pacific Northwest: Washington, Oregon, Idaho, Alaska, and Montana) e-mail: step100@aol.com

ÆGiS is made possible through unrestricted grants from Roxane Laboratories, Inc., iMetrikus, Inc., the National Library of Medicine, and donations from users like you. Always watch for outdated information. This article first appeared in 1997. This material is designed to support, not replace, the relationship that exists between you and your doctor.

ÆGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1985, 1999. ÆGiS & the Sisters of Saint Elizabeth of Hungary. All materials appearing on ÆGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of ÆGIS and the Sisters of Saint. Elizabeth of Hungary, or the party credited as the provider of the content.