HIV/AIDS Among Women Who Have Sex with Women
Alison R. Jones
Cynthia L. Hoyler
In 1997, The Institute of Medicine (IOM) Committee on Lesbian Health Research Priorities concluded the following:
There is no standard definition of lesbian. The term has been used to describe women who have sex with women, either exclusively or in addition to sex with men (i.e., behavior); women who self-identify as lesbian (i.e., identity); and women whose sexual preference is for women (i.e., desire or attraction).1
Sexual orientation has been described as occurring along continua that include behavior, desire, and identity.1 “That is, women may exhibit differing degrees of same-sex sexual behavior, desire, or identity in combinations that vary from person to person.”1 To appreciate the concept of continua in female sexuality, this chapter will examine the psychiatric aspects of human immunodeficiency virus (HIV) disease and acquired immunodeficiency syndrome (AIDS) in lesbians and expand the focus to include all women who have sex with women (WSW).
Incidence and Risk Factors for HIV/AIDS in Women Who Have Sex with Women
Women are now the population with the fastest growth of new infections with HIV.2 Currently, the greatest risk for HIV in women throughout the world is heterosexual intercourse.1 The CDC regards the highest level of risk for HIV infection to occur through unprotected anal sex, although risk in unprotected vaginal sex is also high. The National Lesbian and Bisexual Women’s Health Survey reported that 16% of the 6,146 women surveyed were currently having sex with both male and female partners.1,2 Compared to their exclusive cohorts (homosexual or heterosexual), behaviorally bisexual women had higher rates of HIV seroprevalence.1
Although considered to be low, the incidence for HIV infection through female-to-female transmission has not been established.1,3 Although there are limited case reports of female-to- female transmission, these have not been substantiated through large-scale, longitudinal
studies.4 Controversial evidence does exist regarding female-to-female transmission for other sexually transmitted infections (STIs) (i.e., bacterial vaginosis, trichomonas vaginalis, human papillomavirus, herpes simplex virus, hepatitis A, and syphilis).2,4,4,6 Reports concerning data regarding female-to-female transmission of HIV infection are conflicting at best.5 The lack of consistent definitions for WSW and the fact that the Centers for Disease Control and Prevention (CDC) has no HIV reporting category for lesbians limits reliability of data regarding transmission rates.1,3 The prospective study cited most often regarding female-to-female transmission for HIV was done in Italy. It followed 18 HIV-discordant, partnered lesbians in which no incidence of HIV occurred in the uninfected partner after 10 months.1,4,5
studies.4 Controversial evidence does exist regarding female-to-female transmission for other sexually transmitted infections (STIs) (i.e., bacterial vaginosis, trichomonas vaginalis, human papillomavirus, herpes simplex virus, hepatitis A, and syphilis).2,4,4,6 Reports concerning data regarding female-to-female transmission of HIV infection are conflicting at best.5 The lack of consistent definitions for WSW and the fact that the Centers for Disease Control and Prevention (CDC) has no HIV reporting category for lesbians limits reliability of data regarding transmission rates.1,3 The prospective study cited most often regarding female-to-female transmission for HIV was done in Italy. It followed 18 HIV-discordant, partnered lesbians in which no incidence of HIV occurred in the uninfected partner after 10 months.1,4,5
Although WSW have risk factors similar to those in all women, some are unique. Studies indicate that WSW engage in higher rates of injection drug use, sex with gay or bisexual men, sex with injection drug users (IDUs), sex with an HIV-infected partner, and sex for secondary gain (i.e. money, drugs, etc.). Although this may be an effect of sampling that included high rates of women involved in sex work, these findings were comparable throughout most studies.1,2,6,7 Other factors that influence risk for WSW include their specific sexual practices, their attitudes regarding risk, and their limited use of risk-reducing behaviors. Sexual practices in WSW include, but are not limited to, the following: oral sex (receptive, active), vaginal penetration (digital, sex toy), mutual masturbation, genital–genital (perineal) contact, anal penetration (digital, sex toy), fisting (hand-vagina or anus), rimming (mouth-anus), and sadomasochistic activity. For any of these activities, sex during menses may also apply.1,3,5,6 Practices of highest risk are those with the potential for tearing (i.e., fisting, use of sex toys, sadomasochistic activities) and exchange of bodily fluids (oral sex, genital–genital contact, rimming, and sex during menses). As is true for heterosexual practices, not all WSW engage in all practices cited. An additional risk for WSW seeking motherhood is donor insemination.5
As indicated earlier, many WSW have past or present histories of sex with men, particularly men in higher risk categories. These women, regardless of their sexual orientation, are also unlikely to use safe sex practices already established for heterosexual intercourse. One U.S. study with a sample of 7,929 total respondents from all 50 states found that of the 6,935 self-identified lesbians, 70.5% had a lifetime history of vaginal intercourse with a man and 17.2% had lifetime history of anal sex. The rates of lesbians with histories of vaginal intercourse without a condom were significantly high—88.2% compared to 63.9% of all respondents. Rates for anal sex without a condom were 15.8% for all respondents. Older lesbians (greater than age 50) were more likely to report sexual histories without a condom.4 A United Kingdom study consisting of 803 lesbian and bisexual women from two lesbian health clinics and 415 lesbian and bisexual women from a fairly diverse community found similar results. With a breakdown of 90% lesbian, 8% bisexual, and 2% other, 85% had reported past or present sex with men and 12% in past year. Rates for use of condoms or female condoms for vaginal intercourse were 23% always, 45% occasionally, and 32% never. With anal intercourse, rates were 29% for always, 29% occasionally, and 42% never.6 Both studies denote minimal risk-reducing practices for high-risk heterosexual contact.
Use of safe-sex practices between women is also low. Although there are currently no safe- sex guidelines for prevention of HIV infection in lesbians, there are methods to reduce risk.1, 8 The use of dental dams during oral sex, latex gloves with penetration, and washing or placing condoms on sex toys between uses are all known precautions that are seldom practiced.3, 6 Even in high-risk groups of WSW, safer sex practices when having sex with women are infrequently used. In one study of 871 HIV-infected women, 67 had a female partner at some time during the 31/2-year period. Of those 67 HIV-infected WSW, 44 had a steady female partner. Thirty-five of the 44 reported engaging in receptive oral sex in which barriers were used always at 26% of the time, sometimes at 31%, and never at 43%. Surprisingly, HIV serostatus of their partner did not affect the use of barriers. Couples reported use of barriers as always (23% concordant, 27% discordant) and sometimes or never (77% concordant, 73% discordant).8
Another study involving women who were IDUs or crack cocaine users who engaged in having sex with women 30 days before interview reported use of barrier protection when giving oral sex only 6% and only 3% while receiving oral sex.9 Factors that influence the use of risk- reducing behaviors in WSW include their attitudes regarding vulnerability to risk, especially for lesbians.
There seems to be a myth within society and WSW that female-to-female sexual activity is protective against HIV infection. This attitude is also reflected in the medical community, addressed later in this chapter. The fact that there are no established guidelines regarding HIV prevention in WSW supports this misperception.1,8 Lesbians are assumed to be at low risk because of lack of heterosexual intercourse.1 Their relationships are commonly assumed to be monogamous and long term, with low rates of outside sexual partners.1 Self-identified lesbians who have the perception of “lesbian immunity” consider themselves not at risk for HIV infection.3 One study reported that although 82% of lesbians surveyed believed HIV infection was a problem in their community, only 30% were worried about contracting HIV infection and 53% believed they were at low risk.3 Another study found that 39% of lesbians surveyed did not perceive that they had any risk for contracting HIV.3 Part of the problem in self-assessment of risk may be due to insufficient education and communication within the lesbian community. Something unique to lesbians compared to other WSW that may hinder education and communication is their level of disclosure in the coming out process.
Coming Out
Addressing the psychiatric aspects of WSW, and specifically lesbians, demands a discussion of the “coming out” process. This process of disclosure and self-acceptance can begin at any age and may continue for many years of a woman’s life. Many adult lesbians continue to live a “hidden life” and have not negotiated this disclosure process. The following section describes the stages of coming out and addresses some reasons many women continue to live hidden lives.
There have been many theories and stages of the coming out process presented in the literature. Richard Niolon10 presents a concise model that includes self-recognition, disclosure to others, socialization with other gays, positive self-identification, and integration and acceptance. As with other human emotional processes, the stages are fluid and a woman can move back and forth as she negotiates the process of becoming accepting of her sexual orientation and identity.
Initially a woman becomes aware of her physical and emotional attraction to other women.10 This awareness may be associated with feelings of guilt, shame, and anxiety and a sense of being abnormal compared to her family or peers.10 This internal awareness can be denied and repressed for months or years.10 If a young girl fears rejection of her family, on whom she is dependent on for food, shelter, and love, this repression may be part of her survival.10 Even if an adolescent has support from her family, there is often ridicule and marginalization from her peers. Pressures exist to conform to “the norm,” and many women who later identify themselves as lesbian will attempt relationships with the opposite sex because of the need for social acceptance.
Disclosing oneself as lesbian usually occurs first to a close friend or family member.10 If there is a response of rejection or ridicule, a woman may return to the initial stage and question her sexual orientation or identification or choose to keep her awareness of being lesbian to herself, sensing a shameful connection with her identification.10,11 This shame is not only at her “behavior,” but a feeling of shame that her “being” is not acceptable and should remain hidden. Religion often judges the homosexual “as a contaminant to be condemned, permanently distanced, and inexorably punished.”11 The homosexual is seen as one who will
“contaminate others who are healthy and pure.”11 If a woman internalizes this view, or experiences judgment on this harsh level, she may find it impossible to tolerate the “coming out” process because it would be attached to a proclamation of disease and disgust.11 This process of disclosing to others can last many years and often occurs in stages. A woman may disclose to her family and close friends, but stay “closeted” in her school, work, or church setting. Kaufmann and Rapheal11 in their book Coming Out of Shame describe self-disclosure as a form of self-exposure that inherently has the risk of shame. “Coming out to someone who doesn’t know you’re gay or lesbian risks not only rejection, but disgust, contempt, and possibly the loss of the relationship.”11
“contaminate others who are healthy and pure.”11 If a woman internalizes this view, or experiences judgment on this harsh level, she may find it impossible to tolerate the “coming out” process because it would be attached to a proclamation of disease and disgust.11 This process of disclosing to others can last many years and often occurs in stages. A woman may disclose to her family and close friends, but stay “closeted” in her school, work, or church setting. Kaufmann and Rapheal11 in their book Coming Out of Shame describe self-disclosure as a form of self-exposure that inherently has the risk of shame. “Coming out to someone who doesn’t know you’re gay or lesbian risks not only rejection, but disgust, contempt, and possibly the loss of the relationship.”11

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