Women Get AIDS, Too


Women Get AIDS, Too

Being Alive; August 1996
Ferd Eggan


I want to talk about a topic that might have an even bigger impact on society than the speculation about wonder drugs. This is the fact that we are finally seeing some data to rectify the criminal absence of any real research about the course of AIDS in the bodies of women. I don't just mean transmission of HIV, although all the researchers act as if women's only disease issues relate to their social role as mothers. I think that researchers in Vancouver experienced less enthusiasm for the mandatory testing of pregnant women and newborns, which has been such a hot political topic in this country.

Scientists and clinicians now know considerably more about the conditions of maternal-child transmission. The longer the time from the rupture of the membranes around the fetus (waters breaking) and actual birth, the greater the likelihood of transmission. The higher the viral load of the mother, the more likely the transmission. Remember that the demand for mandatory testing was based on data from ACTG 076, which stated that high-dose intravenous AZT in the mother during delivery could lower transmission rates. However, the newer findings that AZT monotherapy is obsolete make the arguments for mandatory testing and treatment very different.

Women have been objecting to ACTG 076's recommendations based on two arguments. One was the violation of civil rights in marking one particular group for mandatory testing. (AHF's Michael Weinstein, one of the loudest (male) proponents of mandatory testing and treatment of women, told a colleague he just didn't believe women could be trusted to do "the right thing" without doctor's orders.) But the other argument made against 076 was that we knew nothing about the long-term effects of extremely high-dose AZT on mother and child. If the mother's body is flooded with 1600 milligrams of IV AZT per hour during delivery, does this create AZT-resistant virus in her body and the child's? Does so much AZT reach toxic levels far too quickly? Counseling about the new protease inhibitors and all the options, and funding to pay for the better drugs will naturally increase the likelihood that mothers will voluntarily act to prevent infection of their babies without having to risk injury to themselves.

But women have bodies and lives even when they aren't giving birth. Yet researchers have done almost no work to see how CMV or PCP progresses differently in women's bodies. Marge Cohen of Chicago's Maternal Child HIV Clinic has finally confirmed what women have been saying for years: women with HIV have abnormal menstrual cycles. She showed from the WIHS (Women's Interagency HIV Study) study that these menstrual abnormalities are similar to those of the poorest, drug-using women without HIV, and has agreed to report more fully on these issues in an upcoming issue of Women Alive.

The research is important, because women were always told that it was all in their heads. Meanwhile, data are now showing that women have higher rates and quicker progression of lymphomas and some opportunistic infections, but there are few investigations of how women absorb the medications for these conditions. And the WIHS study also showed that up to 65% of the women in care for HIV were currently having or had sometime in the past primary intimate relationships with other women; yet there is no research on how these women may access care less often or differently because lesbian behavior is still stigmatized or ignored. This is not an issue about woman-to-woman transmission, but simply a call for more research about the medical consequences of HIV for the many different types of women who are getting the disease.

Worldwide, more than half of all cases of AIDS are among women. In Los Angeles, the numbers are smaller due to the continuing preponderance of gay/bisexual men (mainly African-American, Latino and Asian/Pacific Islander) among new cases. However, it is true here as well that women need to know how HIV affects their bodies. The Los Angeles statistics about new infections show that African-American women and Latinas have the fastest-rising increase in incidence of AIDS. And this points to another important issue raised in Vancouver: prevention efforts are undergoing a very dramatic change. A study of Puerto Rican women in the Bronx, NY, indicated that education and jobs were the factors that were most likely to predict these women's use of condoms. Instead of treating decisions about safe sex as individual problems, researchers are looking at the context in which women and men are making sexual choices.

Women Alive has called for new research on a problem which is very significant in Los Angeles: in this area of the country, most new infections to women come from HIV+ men who were infected through sex with another man. Many of these men consider themselves completely straight, and cannot be reached through gay/bisexual prevention campaigns. Many are also involved with transgender women, so easy labels for their sexuality need to be reexamined.

In one remarkable study in Britain, researchers ran small classified advertisements in heterosexual dating pages and in sporting magazines with the following message: "Do you like to get off with other men also? We are sex researchers. Call us for a completely anonymous, confidential interview." The researchers had 64,000 calls in a week! It is clear that empowerment of women to question their partners' sexual lives and to act to prevent infection to themselves is of paramount importance. Equally important is the fight to eradicate the homophobia that makes it difficult for these men to disclose the whole range of their sexual behavior with men and women.


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This information is designed to support, not replace, the relationship that exists between you and your doctor.
©1996. AEGIS.