Between women.

Activists hope for answers from the first federal study of lesbian transmission of HIV 

When Phyllis Marks was diagnosed with HIV in 1986, she knew no other HIV-positive lesbians. And when she finally met a woman who was still interested in being involved with her after learning she was HIV-positive, they had very few places to turn for information on lesbian safer sex.

"I remember going to a lecture on safer sex at Community Health Project in New York with a tape recorder because I was so nervous about getting all the information that I could," Marks re calls. "But there was very little information on how to have sex with another woman. And my lover and I had to be very creative. When we had sex we tried everything from various size embroidery hoops with dental dams and Saran Wrap to finger cots and condoms to make sure we were safe."

Thirteen years later Marks, 56, may finally get the information she needs. In May data will begin to be collected for the first research project funded by the Centers for Disease Control and Prevention on HIV-positive lesbians and other women who have sex with women. Furthermore, the study is the first designed to use a virus-matching technique to identify possible cases of female-to-female transmission.

"From what we've heard from people who work with these women, there are women who really think they were infected by or infected a female partner," says Kathleen Ethier, an associate research scientist at Yale University who is heading the study. "Yet the idea that HIV can be transmitted between women has been discounted for so long and continues to be discounted."

Lesbian-health activists have advocated for increased research on HIV transmission between women since the start of the AIDS epidemic, and their efforts led the CDC to host the historic Lesbian HIV Issues Meeting in 1995. That conference as well as the HIV Epidemiologic Research Study on HIV-positive women, which found a higher than expected number of women who have had sex with women, laid the groundwork for Ethier's study.

"People were blown away by the results of the HERS study," says Meaghan Kennedy, an epidemiologist in the Division of HIV/AIDS Prevention at the CDC. Kennedy assisted Ethier and an advisory committee composed of lesbian-health advocates and HIV researchers in designing the new study.

"The data showed that 18% of these women--one in five--reported same-sex contact. And even though this is a select group of urban women who are HIV-positive, that number was much higher than anyone ever expected."

In terms of statistics the course of the epidemic suggests that the risk of female-to-female transmission is small. Though at least five possible cases of woman-to-woman transmission have been reported by physicians since 1984, none have been confirmed through virus matching to determine if the strain of one virus passed to another is genetically identical. Such evidence would be definitive proof of transmission.

"Almost everyone at this point would agree that HIV is not easily transmissible between women," Kennedy says, "but I think that it is possible. And with this study, with the use of blood samples, we will be able to determine if it is very likely that two women share the same virus. And whether we find one case or five, we will have answered the same question."

Lesbian-health activists and some researchers believe that the CDC's overall method of tracking transmissions--which has never included a category for female-to-female transmission--has probably led to misclassification and thus underreporting of female-to-female cases.

"The CDC's surveillance method wasn't designed to find cases that don't happen a lot," Kennedy says. "Surveillance is based on a hierarchy of probability that you were infected this way if you engaged in this behavior. So the fact that we haven't found them there isn't a big surprise."

Since so little is known about HIV transmission risk between women, Ethier's study will also look at all types of sexual behaviors HIV-positive lesbians and other women who have sex with women engage in. In addition, her research will examine whether and to what extent women are using safer-sex methods. "Most HIV-positive women are in the dark about what is safe," Ethier says. "And they've had to make up guidelines as they go along."

Lesbian-health advocates and lesbian-health researchers agree that the CDC's decision to fund this study is a huge accomplishment. "It's really important that the CDC is paying attention to this," says Jeanne Marrazzo, an assistant professor of medicine at the University of Washington who is studying the sexual transmission of diseases between women. "A lot of people who study HIV and STDs don't even think there is the potential of transmission between women because there's this incredible assumption that basically women don't have sex. It's the worst combination of sexism and homophobia--thinking that not only do you need a man for sex to occur but that when you don't have a man, you really aren't going to do anything very interesting."

The lesbian AIDS study will use clinics in four cities--Baltimore, New York, San Francisco, and Washington, D.C.--as research sites. (Women who think they may have been infected by or infected another woman but live outside of these areas can take part in the study by contacting Ethier through The Advocate's Web site.)

Ethier and Kennedy emphasize that even if no cases of HIV transmission between women are found in this study, that doesn't mean that such transmission can't or hasn't happened. "If we can find those cases," Ethier says, "then we can say, `Yes, this happens,' and no one has really been able to say that before. But if we can't find cases, that doesn't mean it can't happen. It means we just didn't find those cases.

"By doing this study we're not trying to say that there is a huge risk," Ethier continues. "But there is a significant portion of women who are HIV-positive who have sex with women. This study validates that these women are out there and that their voices and concerns need to be heard."

Marks concurs. "I think that there is still a lot of fear in the lesbian community about having sex with a woman who you know is HIV-positive and that that fear is much higher than the possibility of transmission," she says. "But then again, how do we know?"

Rochman is a freelance writer in San Francisco specializing in health issues.