Written by:
Karen Hawkins
Photographer:
lissa ivy
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this Issue of Curve:
Vol. 13#4
It’s a myth that has been perpetuated in the lesbian community for decades, and one that has unfortunately been corroborated by health-care providers and even the Centers for Disease Control and Prevention: While female-to-female HIV transmission hadn’t been ruled out, the risks were slim to none.
With the recent report of the first documented case of woman-to-woman transmission, advocates who work in lesbian HIV health are watching as the rest of the world realizes what they’ve known for years: It was just a matter of time.
A “FIRST” IN NAME ONLY
The case involves a 20-year-old African-American woman from Philadelphia who contracted the virus that causes AIDS from her female partner. The details were released in the February 1, 2003, online edition of the journal Clinical Infectious Diseases.
According to the journal, “the route of transmission was probably use of sex toys, used vigorously enough to cause exchange of blood-tinged body fluids.”
For the first time since the discovery of AIDS more than 20 years ago, researchers were able to verify female-to-female transmission because of two factors: 1) the woman’s multidrug-resistant strain of HIV is chemically identical to the virus carried by her HIV-positive partner; and 2) she didn’t have any other risk factors for HIV. She had no history of substance abuse (including injection drugs), she had no tattoos or body piercings, she’d never had sex with a man, and she’d never had a blood transfusion. For two years before her diagnosis, she had sex only with her partner.
While this is the first documented case of female-to-female transmission, it is by no means the first to occur, advocates say. The woman in question is simply the first to fit into a certain set of parameters set by the CDC and accepted by most researchers. Women who may have contracted HIV from their female partners in the past and who had any other risk factors have traditionally been classified either under those risk factors or as “undetermined.”
Particularly troubling to some advocates is that under CDC guidelines, heterosexual sex is not ruled out as a risk factor unless a woman hasn’t had sex with a man since 1978.
“A woman could have 20,000 lesbian partners, but if she slept with one man in the last five years, that’s how she’d be classified [by the CDC],” says Lora Branch, director of the Office of Lesbian and Gay Health for the Chicago Department of Public Health.
LESBIANS OVERLOOKED
Some advocates argue that the CDC has overlooked lesbian HIV risk since the beginning of the AIDS epidemic. It took over 10 years for the CDC to expand its definition of HIV to include female-specific opportunistic infections, and despite the recent case of woman-to-woman transmission, the CDC still does not currently categorize sex between women as a risk factor for HIV. There is little data about HIV and lesbians, and only a handful of studies have included women who partner with women.
Of course, women in general have also been under-represented in HIV/AIDS research. Little is known about how AIDS medications affect women, for example; this is particularly true of women of color, who make up almost 25 percent of the 40,000 new HIV infections each year in the United States. There is also relatively little known about the opportunistic infections that affect women, including many that target their reproductive systems.
Over the years, the CDC has funded some small-scale regional studies about lesbians and HIV. The largest of its kind, an ethnographic study of HIV-positive women who partner with women, was conducted during the last few years in New York City and Boston. Its investigators included staff from the Lesbian AIDS Project, the CDC, the National Institutes of Health (NIH), and the National Development and Research Institutes (NDRI), among others.
The findings, unfortunately, were lost on September 11, 2001. The records were stored at the NDRI, a nonprofit organization whose offices were housed in the World Trade Center. Amber Hollibaugh, the first director of the Lesbian AIDS Project at the Gay Men’s Health Crisis (GMHC), was involved in the research. She says some of the data has been reassembled, but that the effects of 9-11 have made the project take much longer than anyone expected.
DON’T ASK, DON’T TELL
The myth that women can’t transmit HIV to each other has led to several misconceptions, the most potent among them being that there are no HIV-positive lesbians. But try telling that to the 1,000-plus clients of the Lesbian AIDS Project (LAP) at GMHC in New York City.
Founded in 1992, LAP grew from an initial caseload of 30 women in its first year to 400 by its second. Today, its clients include 1,000 HIV-positive women, their caretakers and 1,000 of their children.
Tolata Reeve, director of Women and Family Services at GMHC, says one reason it’s taken so long for a female-to-female case to be recorded is that not all HIV-positive women who have sex with women identify as lesbian or bisexual. Women who have sex with women are underrepresented in health surveillance, Reeve says, and we “need to make sure the data asks questions about sexual identity and behavior.”
As of December 1998, the CDC reports, there were 109,311 women with AIDS living in the United States. Of that number, 2,220 reported that they had had sex with women, and 347 of them reported having sex with women exclusively. The CDC also notes, however, that information on whether a woman had sex with another woman was missing for half of the 109,311 cases because either the doctors didn’t ask or the women didn’t tell.
Given the stigma that still surrounds women in same-sex relationships, many HIV-positive women choose not to tell their doctors or researchers that they have sexual relationships with women. And in most cases, the physicians and researchers, either because they’re uncomfortable with the question or because they’re oblivious to the possible answer, simply don’t ask.
The divide between identity and behavior has a lot to do with culture, Reeve says, and is observed most often among African-Americans and Latinas, who make up almost all of LAP’s clients. Both are cultures in which “propagation of the family line is more important than personal happiness,” according to Reeve. But, she adds, “The culture allows for a life on the side.”
African-American women continue to be among those hardest hit by HIV/AIDS: Of the approximately 12,000 new infections among women each year, about 64 percent are black, according to the CDC. About 18 percent are Latina and 18 percent are white. Reeve says she has seen a “whole range of approaches to sexual orientation and behavior” among Latinas, including women who consider themselves heterosexual or who are married but who also have long-term sexual relationships with women.
Hollibaugh, the first director of LAP, feels that much of the lesbian community’s denial about HIV/AIDS is rooted in its unwillingness to acknowledge that not all women who partner with women are white and middle-class. Some are women of color, some are drug users, some have been incarcerated and some maintain sexual relationships with men out of necessity or convenience.
Regardless of the reasons, lesbian and bisexual women who are part of marginalized groups heavily impacted by HIV and AIDS are finding themselves further marginalized within the more mainstream lesbian community.
“When you leave out a whole group of women because of their social position and then don’t claim them as part of the lesbian geography, there’s something about that that is both perplexing and frightening,” says Hollibaugh.
WHEN IS LESBIAN SEX “REAL”?
Perhaps one of the most striking facts of the first documented case of woman-to-woman transmission is that the HIV-positive partner of the infected woman “used protection only with her male partners, as instructed by her physician,” according to the journal report.
Hollibaugh says she feels the system let the women down. “A woman took responsibility and asked providers how she should handle sex with women and was given incorrect information, and that created a situation where someone else was infected,” Hollibaugh says. “She actually tried to do what HIV providers tell you to do … and was told it was no big deal.”
Most HIV-prevention messages aren’t reaching lesbians and other women who have sex with women because they’ve never been the intended targets of these campaigns. The conventional wisdom in HIV health has been that the risk of female-to-female transmission is so low that it never needed to be taken seriously. For HIV-positive lesbians, however, any risk is a big risk.
B., who asked that her real name not be used, has been HIV-positive since 1989. Her partner isn’t positive, and the couple has worked hard to keep it that way.
“I really take the precautions I need to take,” she says, “even though I feel like I’m dressing up in a Hefty bag” to protect her partner. B. was an early staffer with LAP and currently works elsewhere in the HIV health-care field. Because of her background as an advocate, she says, she’s never had to rely on her physicians for information. In her experience, doctors have never asked about her sexual orientation or behavior, and she hasn’t felt the need to volunteer it.
Reeve says one reason lesbians haven’t been educated about HIV risk is the biased belief that sex between women isn’t “real sex.” Female sexuality has come to be viewed by many health-care providers only in the context of childbearing, she says, and lesbians are mistakenly excluded from those discussions.
THE ROAD AHEAD
Many HIV advocates aren’t optimistic about the impact that this first documented case will have on lesbian health and HIV. Branch, of the Chicago Department of Public Health, says it all depends on how seriously AIDS educators take the information. She also cautions that the fact that it is only one case could have the opposite effect on increasing awareness. She believes people may assume that lesbian sex is a health risk but remain unconvinced by the lack of more documented cases.
Reeve, of GMHC, says it is up to the larger gay community to take the lead. “In order for us to make this case count, we need a broad coalition of support in the LGBT community,” she says. “We need to make HIV transmission a lesbian health priority. ... We need to encourage women to take responsibility to protect themselves.”
But Hollibaugh has doubts about the larger community’s ability to change course so far into the epidemic. “It would shock me if this case has any really big impact on health provision and prevention,” she says, “because who will articulate that need? The movement that’s already not done it?”
SAFETY FIRST
How women who partner with women can protect against HIV:
* Use protection during oral sex. Vaginal secretions and menstrual blood are both potentially infectious. Dental dams, cut-open condoms, latex gloves or plastic kitchen wrap can all be used to minimize contact with fluids during oral sex. You may have heard some debate about microwaveable versus “regular” plastic wrap. Though microwaveable plastic wrap can become porous, this happens only at very high temperatures — literally, hundreds of degrees Fahrenheit hotter than the human body.
* Cover your hands with latex gloves before sex. You can also find finger cots — condoms for your fingers — in the first-aid section of most drug stores.
* Use a condom every time you have sexual contact with men or with sex toys. Put a new condom on your sex toys every time you use them, and remember to use a new condom each time if you’re sharing toys.
* Avoid deep kissing if you have sores or cuts in your mouth.
* Know your HIV status and the status of each of your sexual partners.
Sources: CDC, auntieteck.com, thebody.com
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