The Washington Blade - January 14, 2000
Rhonda Smith

Another goal of the study, which will involve 200 participants from Washington, D.C., New York, and San Francisco, is to identify which sexual practices between women might facilitate the transmission of HIV. In addition, the researchers would like to learn more about prevention strategies used by HIV-positive women who have sex with women.

"One of the most important parts of the study is giving a voice to a group of women we have not heard from yet," said Kathleen Ethier, a behavioral scientist in the CDC's Division of STD Prevention who is coordinating the study. "I think that's essential."

Ethier wrote the grant for the $264,721 study, which is scheduled to be completed in September. She also served as its principal investigator while she was an associate research scientist in Yale University's epidemiology and public health department.

Data is being collected from women with HIV infection at three U.S. sites: Whitman-Walker Clinic in Washington, D.C., Montefiore Medical Center in New York City, and the Center for AIDS Prevention Studies at the University of California at San Francisco.

Ellen Kahn, director of Whitman-Walker's Lesbian Services Program, said her division plans to recruit and interview up to 75 women for the study.

"Currently, we're trying to educate people who work with patients with HIV about the study so they can inform clients they see about this opportunity," Kahn said.

Whitman-Walker Clinic is scheduled to begin interviewing study participants in January.

Researchers at Montefiore Medical Center in New York City plan to recruit 50 study participants who acknowledge that they have a current or past sexual history with another woman.

"We want them to bring in a female sex partner we can interview as well," said Dr. Ellie Schoenbaum, director of the medical center's AIDS Research Program, which also is part of the Albert Einstein College of Medicine's Department of Epidemiology and Social Medicine.

"The goal is to assess whether there are any female sexual partners whose only risk for HIV is that they had sex with another woman," she said. Some study participants will be asked to provide blood samples, Schoenbaum said, and CDC officials plan to analyze the samples to determine whether one HIV-positive woman possibly infected her current or past partner with HIV. If the analyses indicate they have the same strain of the virus, this could indicate, as some Lesbian and women's health advocates believe, that women can sexually transmit HIV to other women.

Montefiore Medical Center officials already have begun recruiting women to take part in the study. Schoenbaum said HIV-positive women are being recruited from existing studies as well as from local health clinics where providers might know of other possible participants.

She predicted that it would be difficult to determine whether a woman in the study contracted HIV from another woman.

"My sense is that this will be like looking for a needle in a haystack," Schoenbaum said, "because there's now ample evidence that many Gay women who have HIV have a higher risk [for being infected with the virus] than even the average heterosexual intravenous drug user."

This is because Gay women with HIV frequently have a history of having sex with men for money as well as having been in abusive relationships, she said. "Women with a very high risk [for contracting HIV] tend to have gone through abuse and violent episodes," Schoenbaum said. "Even in studies we've done in which women didn't contract HIV because of drug use, their past history with men is such that one has to wonder if that is where the HIV came from. So I think it's going to be hard" to find evidence of female-to-female HIV transmission. In metropolitan Washington, Kahn said Whitman-Walker officials plan to recruit 50 women with HIV to take part in the study. An additional 25 women from Baltimore might be included in the study as well but Kahn said Clinic officials have not made a final decision about this.

"We hope to include participants from Baltimore and we're exploring that possibility," she said. "But we don't have a site in that city where we could conduct phlebotomies, it's not convenient for participants there to travel to D.C., and we don't have enough funds to help with travel expenses."

Kahn said, however, Clinic officials are negotiating with several Baltimore-based organizations that might be able to help coordinate this effort so women from that city could take part in the study.

Another concern she mentioned is making sure that a broad sample of HIV-positive women who might not necessarily identify as Gay is recruited to take part in the study.

"We want to find women who are HIV-positive who have or have had sexual relationships with women in the past," she explained. "They might have a Lesbian identity, be bisexual, or identify as heterosexual women who have had sexual intimacy with women at some point.

"A challenge is to reach beyond the Lesbian- and bisexual-visible women," she added. "We want to be careful not to exclude anyone, because not everyone identifies as Lesbian."

The study should help researchers and advocates for Lesbian health learn more about the differences between women's sexual behavior and how they identify their sexual orientation, Kahn said. Because the study is behaviorally based, she said Lesbian health advocates and researchers should be able to learn more about sexual behaviors among women that could put them at risk for contracting other sexually transmitted infections.

To protect study participants' confidentiality, each woman who takes part in the study will be identified by a numerical code instead of by her name, CDC officials said. In Washington, they will be asked to take part in one 90-minute interview and be paid $25 for that participation.

Based on the women's responses during the interviews, Ethier said, some, but not all, study participants will be asked to provide blood samples. Researchers at the CDC in Atlanta plan to analyze the samples to determine whether HIV-positive women who have been sexually involved with each other are infected with the same strain of the virus. This would provide more conclusive proof that woman-to-woman HIV transmission is possible.

Although the risk of HIV transmission between women is likely very small, some researchers and Lesbian health advocates contend that cases of female-to-female transmission of HIV have, most likely, been underreported. This is because the CDC's method of tracking how HIV is transmitted has not included a category for female-to-female transmission.

Kitty Warren, a CDC spokesperson, said that, on the CDC's standard HIV surveillance report, federal officials list a hierarchy of the most efficient ways HIV is transmitted. The categories include: men who have sex with men, injection drug use, men who have sex with men and inject drugs, heterosexual contact, blood transfusion, hemophiliac, and mother-to-infant transmission. There also are categories for no risk, unknown risk, and unreported risk.

For women who have HIV but do not report one of the previously mentioned risk factors, Warren said, health officials would conduct a follow-up interview to determine how they might have been infected.

Some Lesbian health authorities have said the CDC should implement a procedure that would more easily identify possible cases of female-to-female HIV transmission.

Dr. Robert Janssen, acting director of the CDC's HIV/AIDS Prevention division, said special studies conducted by the CDC on risk factors for HIV transmission among women who have sex with women indicate that most are infected from "traditional modes." Such modes would include having sexual intercourse with a man, he said, or by injecting illicit drugs.

"In the studies we've done to date, female-to-female transmission is very rare," Janssen said, noting that this is why the CDC has not taken steps to change its methods for documenting such cases.

In a CDC report titled, "Epidemiology of Reported Cases of AIDS in Lesbians, United States 1980-89," Dr. Susan Chu noted that two instances of female-to-female transmission of HIV infection had been reported, though not confirmed.

But Kahn at Whitman-Walker said HIV transmission among women has been "grossly understudied."

"There have been some documented cases of woman-to-woman transmission but they haven't been thoroughly convincing to people in the research world because they weren't looking at other risk factors."

Ethier noted that, when information about HIV was first disseminated, it focused, primarily, on Gay men, then people who inject illicit drugs, and those infected with HIV through heterosexual contact.

"The risk was so much larger [for these groups] that people didn't focus on the risk for HIV-positive women or women with sexually transmitted diseases," she said.

In the past few years, however, researchers have seemed more interested in tracking HIV cases among women, she said. Two recent factors led to this. In 1995, the CDC convened a meeting for researchers, health care providers, and Lesbian health activists to discuss HIV issues related to Lesbians. The meeting brought together people who had been pushing for more research on Lesbian health and, Ethier said, this provided the impetus for the current study.

In addition, data reported in 1995 from the HIV-Epidemiologic Research Study (HERS) indicated that 18 percent of HIV-positive women reported same-sex contact. But, again, CDC officials have said that HIV-positive women who reported same-sex contact also tend to report engaging in heterosexual contact or injecting illicit drugs.

Nevertheless, Ethier said the number of HIV-positive women who reported same-sex contact was much higher than expected. The HERS study involved identifying females with HIV as well as collecting information about sexual behavior for women who were HIV-positive and HIV-negative.

"This is really something that needs attention and that hasn't always been an easy process, but the CDC has been really receptive to this study," Ethier said. "We hope what we get out of it shows the importance of looking further into this issue."

Renee Culver will be coordinating Whitman-Walker Clinic's participation in the study about woman-to-woman transmission of HIV. For information about enrolling in the study, contact Culver at (202) 939-7896.
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