Say It! HIV Among Lesbians: Women and AIDS

by Kate Morrow, Ph.D.

Lesbians have a long history of invisibility -- and courage. Lesbians, and other women who loved women throughout history, have struggled to maintain the integrity of their lives, while at the same time maintaining their relationships -- without support from the majority community and often without the support of a unified and visible lesbian/bisexual women's community.

We were shrouded in mystery, often compelled to "hide," passing for men, passing with our partners as a "butch/femme" couple or not. Lesbians, according to majority myth, don't really have sex. So how could they get a sexually transmitted disease? Women and AIDS?

When we were discovered or chose to "come out," we were often shunned, ostracized, excommunicated. All this made it easy for the majority culture to deny our existence, deny our passions, and deny the responsibility to inform us and prevent disease in our community.

Since the beginning of the HIV epidemic, lesbians and other women who have sex with women (WSW) have played a major role: caring for our sick and dying gay brothers, caring for all those we love who are/were affected by HIV/AIDS. But there has been little talk of lesbians themselves being infected with this deadly virus.

You need only look closer to see that, actually, there has been evidence since the early years of the HIV epidemic that women can transmit HIV -- and other sexually transmitted diseases, including herpes and hepatitis -- to other women.

Women and AIDS

The first case of suspected transmission of HIV from one woman to another was reported in 1984. Others followed, with the Centers for Disease Control and Prevention (CDC) currently (1997) reporting that 333 women with AIDS report only sex with other women. The CDC was able to obtained more detailed information from only 50% of these women, but report that 97% of them had other known risk factors (e.g., injection drug use). So, given available evidence, WSW are at very little risk of exposure via female-to-female sex.

So let's shift to the evidence. In 1984, Sabatini and colleagues published the first case study of suspected female-to-female transmission of HIV. Another case study was reported in 1986 by Marmor and colleagues. Still another in 1987 reported by Monzon and Capellan.

In 1993, Rich and colleagues reported yet another case of female-to-female transmission of HIV. In addition, the popular press has reported several cases not published in medical journals. So, given "available" evidence, what is the risk of female-to-female HIV transmission?

The relative risk of transmission via female-to-female sexual exposure to HIV is unknown. A lack of data which could have been compiled throughout the epidemic was thwarted by the initial understanding of HIV disease as one which existed in specific types of people (e.g., gay males, intravenous drug users, hemophiliacs). This understanding prevented the health care system from defining sexual risk behaviors: it stressed people, not sexual behaviors.

Lesbians were seen as least likely to be infected, and because our understanding remained entrenched in biased attitudes toward people rather than risk behaviors, no data was systematically gathered. This led to a circle of reasons/excuses for not including lesbians in prevention programming.

There's no data to support risk of female-to-female transmission.... Why is there no data?.... Because none has been gathered.... And why has none been gathered?.... Because there's no reason to believe that female-to-female transmission of HIV occurs.... et cetera et cetera et cetera

Today, we know from a number of studies and reviews (e.g., Einhorn & Polgar, 1994; Morrow, 1995) that women who identify as "lesbian" report substantial "traditional" HIV-related sexual risk behaviors. The error in our understanding of risk, then, comes not from what we know about how HIV is transmitted, but what we refuse to acknowledge about what we don't know.

It is virtually impossible to go back and interview women who may have been exposed to HIV via woman-to-woman sex. By virtue of the way scientific data is collected, it's incredibly difficult to tease out one occurrence of a risk behavior from another in order to determine which behavior actually served as the causative factor in a person being exposed to HIV, or any other STD.

Lesbian women rarely engage in only one kind of sex act: they engage in oral-vaginal sex, oral-anal sex, sex toy sex, and, yes, even sex involving a penis. It may be that a particular individual was exposed to HIV via a more "traditional" sexual risk behavior: penile-vaginal sex, for instance -- or injection drug use.

Once a woman is infected with HIV -- or another STD -- there is little reason to believe that she cannot pass on any number of pathogens, via sex, to another woman! There are well-documented cases of female-to-male transmission of HIV.

Scientists know that vaginal secretions and menstrual blood are potentially infectious and that exposure of a mucous membrane to these secretions can potentially lead to infection. It may be rare that this infection occurs in self-identified "woman-only" lesbians, but it is not impossible.

And remember, HIV isn't the only disease worthy of prevention efforts. Many STDs are passed woman-to-woman (Carroll, et al., 1997), and some are not curable. The presence of STD infection causes increased susceptibility to HIV infection. Preventing one facilitates prevention of the other.

Being sexually safe can help us to maintain a healthy lesbian community. The bottom line is this, in my opinion: it may be difficult for women to infect other women with HIV or other STDs, but it is not impossible.

We have no reason to believe that we can't be infected and it takes very little to practice safer sex until the time comes when we have better information about this disease. I believe that we can rarely count on the majority culture to be sensitive enough to the needs of women, and lesbian women at that, to put a lot of effort into helping us prevent disease in our community.

I mean not to be blatantly critical, but merely to point out where we can -- and must -- help ourselves. We need to take care of ourselves, protect ourselves. More of us are getting comfortable being who we are and being in relationship. More of us are choosing to have families we'd like to be able to be around to see grow up.

AIDS is still not curable. Women and AIDS: We, as a community can prevent this disease from taking so many of us, as it's taken so many of our friends and family members. Be safe!

Carroll, N., Goldstein, R.S., Lo, W., & Mayer, K.H. (1997). Gynecological infections and sexual practices of Massachusetts lesbian and bisexual women. Journal of the Gay and Lesbian Medical Association, 1, 15-23.

Centers for Disease Control and Prevention. (1997, July). HIV/AIDS Prevention.

Chiaramonte, L. (1988). Lesbian safety and AIDS: The very last fairy tale. Visibilities, January-February, 4-7.

Einhorn, L. & Polgar, M. (1994). HIV risk behavior among lesbians and bisexual women. AIDS Education and Prevention, 6, 514-523.

Marmor, M., Weiss, L.R., Lyden, M., et al. (1986). Possible female-to-female transmission of human immunodeficiency virus. Annals of Internal Medicine, 105, 969.

Monzon, O.T., & Capellan, J.B. (1987). Female-to-female transmission of HIV. Lancet, 2, 40-41.

Morrow, K. (1995). Lesbian women and HIV/AIDS: An appeal for inclusion. In O'Leary & Jemmott (Eds.) Women at Risk: Issues in the Primary Prevention of AIDS. New York: Plenum.

Rich, J.D., Buck, A., Tuomala, R.E., Kazanjian, P.H. (1993). Transmission of human immunodeficiency virus infection presumed to have occurred via female homosexual contact. Clinical Infectious Disease, 18, 1003-1005.

Sabatini, M.T., Patel, K., & Hirschman, R. (1984). Kaposi's Sarcoma and T-cell Lymphoma in an immunodeficient woman: A case report. AIDS Research, 1, 135-137.

About the Author:

Dr. Kathleen M. Morrow is a postdoctoral research fellow at the Center for Alcohol and Addiction Studies at Brown University.