Being Alive; June 1997
Nancy MacNeil

During the May 4 opening of the conference at the Pasadena Convention Center, Dr. Janis Giorgi of the University of California at Los Angeles presented data on markers for the progression of the disease and noted that the suppression of viral replication "may be the key to protecting the host." However, when challenged by audience members, Giorgi responded that not enough important ongoing studies of the immunology of hiv disease includes women. "These studies need to be done in women to see whether the same thing is confirmed in women," Giorgi told the audience. However, she pointed out, "It would be valuable to try to share an overall picture of what kinds of immune responses are presented in people who are hiv-infected."

A pronounced theme of the conference emerged when speaker after speaker noted that, despite the hope promised by protease inhibitors, the aids crisis is far from over-especially for women and people of color. hiv+ community activist Marlene Diaz, from New York, moved the audience when she described how near and yet how far away hope can be. "We have to realize that these drugs are useless if they cannot be accessed by all," she said. She called for women to organize just as gay men did. "Why shouldn't women be up in arms?"

Some of the research work that has been applauded for extending the lives of thousands of people with aids came under attack on Wednesday for being biased in favor of men. Doctors and aids activists at the National Conference on Women and hiv said not enough research had considered how the disease manifests itself in women. They said this bias could result in female aids sufferers being denied the same quality of life improvements their male counterparts were increasingly enjoying, and might even help explain some alarming data showing women were more likely than men to die of aids. In 1996, for instance, the death rate among men with aids fell 15%, but increased 3% for women.

Statistics also show women were less likely to have access to the most advanced treatments available, and those who do may not respond as well as men because so many drugs are developed with male patients in mind. "We still know very little about how hiv or the drugs used to treat the disease work in women's bodies," said Mary Lucey, one of the founders of Women Alive and currently Board President of Being Alive. "I'd like to see the Food and Drug Administration include more women in the clinical research and have gender analysis before the approval of drugs." Because there has been so little work on the gender differences of aids, researchers can only speculate how women's needs may differ. But they say there is sufficient medical information to make a case for studying the sexes separately. Women, for example, have dramatically different drug absorption rates than men and undergo hormonal changes prior to menstruation and during pregnancy that lead to immuno-suppression.

Overall, the conference was a huge success. Women Alive presented two poster sessions and hosted two important and well attended events. One poster session was on "Women Alive as a Self Help Group" and explained the results from an "experiences with protease inhibitors" survey for women. On Monday night, a symposium on viral resistance was held with over 100 people in attendance. Interestingly, most of the audience was comprised of hiv+ women seeking this information for themselves. Tuesday evening, Women Alive and our sister organization, Women At Risk, co-hosted a dance at the Pasadena Masonic Temple. This event gave conference-goers a break and allowed them to attend a celebration of women coming together. Thanks to the volunteers of Women Alive and Women At Risk, there was good food, music, champagne, dancing and fun for all. Watch for more details from the 3rd National Women and hiv Conference in the upcoming issue of Women Alive.

Nancy MacNeil, a co-founder of Women Alive, is Women's Program Coordinator of Being Alive and can be reached at 213.965.1564.

970601
BA970601

Copyright © 1997 - Beings Alive. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used. Subscription lists are kept confidential. Being Alive, 621 N. San Vicente Blvd., West Hollywood, CA 90069, Tel - 310.289.2551; FAX - 310.289.9866; Email: BeiAlive@aol.com  http://www.beingalivela.org/