A key immunologist at the third National Conference on Women & HIV finally confirmed what women have suspected all along. There is an urgent need to study women and HIV because scientists cannot assume that what is true for men is true for women.
During the May 4 opening of the four-day 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 study 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, which included more than 1,500 people, including more than 400 HIV-infected women, medical and public health researchers, policy advocates and members of the press. However, she pointed out, women are now being enrolled in clinical trials, including a study she is currently conducting. "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.
U.S. Congresswoman Maxine Waters, a longtime political advocate on behalf of people with AIDS, also noted the "gaps in our progress. Not included in this success story are women and people of color." She ticked off a long list of statistics from the Centers for Disease Control indicating that women are the fastest growing group infected by HIV, and AIDS is now the third leading cause of death for American women between the ages of 25-44 and the leading cause of death for African-American women in the same age group. "Gender-bias has been alive and well in the fight against AIDS," Waters said, adding that women have been under-represented in clinical trials and have not had a voice in making policy such as legislation to mandate testing of pregnant women. "We must not pass policies that encourage women to stay away from the healthcare system." As the new chair of the Congressional Black Caucus, Waters promised that "all of that will change."
Sandra Thurman, the Clinton Administration's newly designated "AIDS Czar," also noted that "the healthcare system was not designed with women in mind, much less people of color...(it) has been run by men for men for far too long." Women must be allowed to make their own decisions, she said.
On the controversial issue of clean needle exchange Thurman said, "We must take politics out of public health and let the science lead, wherever it may go." Thurman has scientific back up for her pronouncement. A recently released independent report from the National Institutes of Health calls for the lifting of the federal ban on funding for needle exchange programs. Half of the new 40,000 infections every year are a result of injection drug use, according to the CDC. Another 20-25% result from sex between HIV-positive drug users and their partners and transmission to their children.
HIV-positive community activist Marlene Diaz, from the HIV Law Project and Just Kids, 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?"
Sitting in the front row, fighting back tears, were Donna Godbold from Huntington Beach, California and her mother Dona Klein. They had focused mightily on the speakers. But when Diaz, an openly HIV-positive woman, took the podium, the two leaned forward. Godbold was diagnosed with full blown AIDS last April after a bout with Pneumosistis carinii pneumonia (PCP).
Although she'd had several symptoms of HIV over the years, her doctors discounted the disease because she was not in a high-risk group. She is experiencing difficulties with her medications and is seeking relevant treatment information. "I came to the conference to get educated," Godbold said. "I don't know any women with AIDS. I have no support network. I'm hoping to meet women I can talk to at this conference."