Facing the facts: lesbian and bisexual women’s vulnerability to HIV

Felicity Daly DrPH and Sophie Strachan

The sexual health concerns of lesbians and bisexual women have often been invisible although studies conducted around the world show that lesbians and bisexual women face multiple vulnerabilities to sexually transmitted infections (STIs) including HIV. In the past three decades the public health argument around lesbians and bisexual women in the HIV response has not been strong(i) or at least not as compelling as the need to prevent HIV among gay and bisexual men or men who have sex with men (MSM)(ii).  Lesbians and bisexual women have largely been excluded from considerations about the needs of both heterosexual women and MSM and has confirmed “the perception that ‘lesbians’ as an identity group are not at risk of HIV”(iii). Because of heteronormative assumptions that view lesbians and bisexual women’s sexual health needs as the same as that of heterosexual women and fail to identify specific same sex risk behaviours “healthcare professionals lack knowledge of lesbian and bisexual women’s specific needs”(iv).

Lesbians and bisexual women are often less likely to access preventative health care as they “receive sub optimal care due to a variety of factors at the individual client level, the provider level and the health care system or macro-social levels”(v). Poor uptake is often associated with negative experiences within health care after disclosure of same sex sexual behaviour which can reveal discriminatory attitudes of health care providers which result in lesbians and bisexual women feeling judged, dismissed or silenced(vi). Health workers are often ill prepared to challenge common beliefs that lesbians and bisexual women are unlikely to acquire HIV given the construction of heterosexual penetrative sex as the ‘real sex’ which poses risk for women(vii).

A lack of evidence has resulted in many lesbian and bisexual women having a sense of invincibility to HIV transmission through their selection of same-sex partners(viii). This belief, which has been termed as lesbian immunity to HIV, is a false consciousness that “may expose WSW to a much higher risk for contracting HIV than is generally perceived”(ix).  Given the general lack of attention to lesbian and bisexual women’s health needs it has been considered “unsurprising to find that lesbians have been marginalised within medical research and practice into HIV and AIDS”(x). It has been argued that this marginalisation is a form of structural violence wherein “heterosexist medical practices and the erasure of lesbian, bisexual and queer women in epidemiological classifications and HIV research”(xi).

The lack of data on HIV among of lesbian and bisexual women has been conflated with the population being at ‘no risk’ or low risk’ for HIV transmission which has in turn “restricted their inclusion in research, education and treatment programmes”(xii).  In order to halt new HIV infections all risk behaviours are important and educational, preventative, diagnostic, and treatment opportunities should be accessible even for ‘low-risk’ groups(xiii). It has been recommended that rather than indicate lesbian and bisexual women at ‘no’ or ‘low’ risk HIV prevention interventions should address specific sexual risk behaviours(xiv).

Studies have shown lesbian and bisexual women’s HIV infection pathways include: previous or concurrent unprotected sex with men, including MSM, including through commercial sex work or transactional sex; injecting drugs or partnering with a male and/or female injection drug user; artificial insemination without requisite tests; receipt of infected blood and blood products, sharing razors(xv). Many of these transmission risks are emphasised in HIV prevention interventions and should be heeded by lesbian and bisexual women’s but sexual health advice is incomplete if it does not also focus on same sex sexual behaviours(xvi).  The literature that has established sexual HIV transmission between women has identified risks including: mucosal contact with infected menstrual fluid, blood, saliva, or vaginal secretions, complicated where there are abrasions on the hands or internal or external oral sores; and through the sharing of unprotected/non-sanitised sex toys(xvii).  Direct vaginal-vaginal or oral-vaginal contact is also thought to be capable of HIV transmission even in in the absence of trauma or lesions(xviii).

Nevertheless debate about whether female-to-female transmission of HIV is ‘efficient’ especially when compared with other highly ‘efficient’ transmission routes, such as anal sex, (xix) has contributed to the invisibilisation of these concerns. Among those cases of female-to-female transmission brought to the attention of clinicians “the number of women whose sexual partners are exclusively women and who have no other identified risk factor for HIV infection is small, rendering even more difficult the task of proving the existence of a risk factor – or lack thereof – with any statistical power”(xx).  Importantly in 2014 the US Centers for Disease Control and Prevention (CDC) published findings of a case of HIV transmission which they determined was likely to be by sexual contact between female partners. The CDC acknowledged that previous confirmation of female-to-female HIV transmission was complex due to other risk factors not being able to be ruled out(xxi). In the 2014 case they concluded “other risk factors for HIV transmission were not reported by the newly infected woman, and the viruses infecting the two women were virtually identical”(xxii). Thus the CDC issued revised guidance which recognises, “although rare, HIV transmission between WSW can occur”(xxiii).

Studies conducted in developed countries may not be generalizable due to differences among lesbian and bisexual women in terms of social and economic opportunities and access to affordable and quality health care in various contexts(xxiv). Interestingly several US studies established that lesbian and bisexual women of African American or latina backgrounds have a higher burden of HIV than the majority white population(xxv). Research conducted within South African LGBT communities within the past decade identified HIV prevalence among black lesbian and bisexual women at 9% and found they were at greater risk compared to white WSW. (xxvi),xxvii,xxviii,xxix,xxx) Furthermore a multi country study in 2013 found that WSW(xxxi) in four countries in Southern Africa face sexual health risks through partnering with men, including for transactional sex, and through forced sexual experiences and within their same-sex relationships as well wherein 20% of WSW living with HIV believe they were infected during an exclusively same-sex relationship.(xxxii,xxxiii) LGBT communities and public health actors in these countries have been surprised by this evidence given there is little international data showing a similar burden of disease elsewhere s there has been limited analysis in both high-income countries and low- and middle-income countries about a range of sexual and reproductive health concerns for lesbians and bisexual women.

Lesbian and bisexual women’s experiences in accessing non-discriminatory health care in the UK are consistent with these findings in other settings. They face significant barriers to accessing HIV services that health professionals inadvertently create through their heteronormative approach.  A presentation at the 18th International AIDS Conference reflected experiences of lesbian and bisexual women living in the UK as part of concerns raised at the conference that the needs of “‘invisible sexualities’ are still not integrated into ‘mainstream’ debates and discussions on women’s rights and HIV, and thus continue to be under-represented in ‘formal’ conference proceedings, as ‘stigma continues to render invisible the sexualities of those most marginalised by gender bias and heteronormativity’”(xxxiv).

A case that was reviewed was of a woman in the UK who came out to her GP as a bisexual and was seeking HIV prevention advice for her current same sex relationship(xxxv). Her GP was unable to engage in the conversation, was visibly shocked and told the woman she had come to the wrong place and it was an inappropriate conversation to have with her doctor. This woman continued searching for appropriate HIV information but was unable to access any literature that would help her navigate important conversations with her partner to help reassure them to be informed of their HIV risks and allow them to move forward and have a pleasurable and safe sex life. Guidance should always reflect that what is a small population of HIV positive lesbian and bisexual women could “grow exponentially if their high risk behaviours are not addressed”(xxxvi).

There remains a lack of support for lesbian and bisexual women in UK HIV services. It has been pointed out by lesbian and bisexual women living with HIV, particularly those from the Africa diaspora, seeking support services. They do not feel their needs are addressed in support groups for gay and bisexual men and transwomen living with HIV. Similarly they are uncomfortable being out about their sexuality in groups serving cis gender women living with HIV. The gap in specific lesbian and bisexual positive women’s support groups in the UK and elsewhere must be addressed along with the need to provide relevant HIV prevention information to all women, regardless of sexual orientation. It is essential that clinicians and HIV service providers ensure that they are accessible for women in all our diversity and not make heteronormative assumptions about the sexual history of women seeking HIV treatment, prevention, care and support.

i Lenke, K. & Piehl, M. 2009. Women who have Sex with Women in the Global HIV Pandemic. Development, 52, 91-94.
ii Power, J., Mcnair, R. & Carr, S. 2009. Absent sexual scripts: lesbian and bisexual women’s knowledge, attitudes and action regarding safer sex and sexual health information. Cult Health Sex, 11, 67-81.
iii ibid: 69
iv Fish, J. & Bewley, S. 2010. Using human rights-based approaches to conceptualise lesbian and bisexual women’s health inequalities. Health Soc Care Community, 18, 355-62. 356
v Hutchinson, M. K., Thompson, A. C. & Cederbaum, J. A. 2006. Multisystem factors contributing to disparities in preventive health care among lesbian women. J Obstet Gynecol Neonatal Nurs, 35, 393-402.393
vi Fishman, S. J. & Anderson, E. H. 2003. Perception of HIV and safer sexual behaviors among lesbians. J Assoc Nurses AIDS Care, 14, 48-55.
vii Power, J., Mcnair, R. & Carr, S. 2009.
viii Dolan, K. A. & Davis, P. W. 2003. Nuances And Shifts In Lesbian Women’s Constructions Of STI And HIV Vulnerability. Soc Sci Med, 57, 25-38.
ix Fishman, S. J. & Anderson, E. H. 2003.
x Richardson, D. 2000. The Social Construction Of Immunity: HIV Risk Perception And Prevention Among Lesbians And Bisexual Women. Culture, Health & Sexuality, 2, 33-49.41.
xi Logie, C. H. & Gibson, M. F. 2013. A Mark That Is No Mark? Queer Women And Violence In Hiv Discourse. Cult Health Sex, 15, 29-43. 37.
xii Montcalm, D. M. & Myer, L. L. 2000. Lesbian Immunity from HIV/AIDS: Fact or Fiction? Journal of Lesbian Studies, 4, 131-147. 134.
xiii Ibid
xiv Richardson, D. 2000.
xv Koh, A. S., Gomez, C. A., Shade, S. & Rowley, E. 2005. Sexual risk factors among self-identified lesbians, bisexual women, and heterosexual women accessing primary care settings. Sex Transm Dis, 32, 563-9.Montcalm & Meyer 2000, Fishman & Anderson 2003.
xvi Logie & Gibson 2013
xvii Montcalm & Meyer 2000; Fishman and Anderson 2003; Gorgos, L. M. & Marrazzo, J. M. 2011. Sexually transmitted infections among women who have sex with women. Clin Infect Dis, 53 Suppl 3, S84-91.
xviii Rich JD, Buck A, Tuomala RE et al. Transmission of human immunodeficiency virus infection presumed to have occurred via female homosexual contact. Clin Ifect Dis 1993: 17: 1003-5.
xix Richardson 2000
xx Kwakwa, H. A. & Ghobrial, M. W. 2003. Female-To-Female Transmission Of Human Immunodeficiency Virus. Clin Infect Dis, 36, E40-1. E40
xxi Chan, S. K., Chronister, K. J., Johnson, R. R. A., Vickie Sullivan, M. & Season, I. 2013. Likely Female-to-Female Sexual Transmission of HIV—Texas, 2012.
xxii ibid: 212
xxiii ibid: 212
xxiv Malterud, K., Bjorkman, M., Flatval, M., Ohnstad, A., Thesen, J. & Rortveit, G. 2009. Epidemiological research on marginalized groups implies major validity challenges; lesbian health as an example. J Clin Epidemiol, 62, 703-10.
xxv Montcalm & Meyer 2000
xxvi Wells, H. & Polders, L. 2004a. HIV and Sexually Transmitted Infections (STIs) among Gay and Lesbian people in Gauteng: Prevalence and Testing Practices. Pretoria, Gauteng, South Africa: OUT LGBT Wellbeing.
xxvii Wells, H. & Polders, L. 2004b. Levels of Empowerment among Lesbian, Gay, Bisexual and Transgender (LGBT) People in Gauteng, South Africa. Pretoria, Gauteng, South Africa OUT LGBT Wellbeing.
xxviii Wells, H. 2006. Levels of Empowerment among Lesbian, Gay, Bisexual and Transgender (LGBT) People in Kwa-Zulu-Natal, South Africa Pretoria Out LGBT Wellbeing.
xxix Rich, E. 2006. Levels of Empowerment among LGBT People in the Western Cape, South Africa Cape Town Triangle Project and University of South Africa Centre for Applied Psychology.
xxx Cloete, A., Sanger, N. & Simbayi, L. C. 2011. Are HIV positive women who have sex with women (WSW) an unrecognized and neglected HIV risk group in South Africa? Journal of AIDS and HIV Research, 3, 1-5.
xxxi Researchers have used the term women who have sex with women (WSW), a behavioural marker which establishes sexual behaviours and can determine potential risks.
xxxii Sandfort, T. G., Baumann, L. R., Matebeni, Z., Reddy, V. & Southey-Swartz, I. 2013. Forced sexual experiences as risk factor for self-reported HIV infection among southern African lesbian and bisexual women. PLoS One, 8, e53552.
xxxiii Matebeni, Z., Reddy, V., Sandfort, T. & Southey-Swartz, I. 2013. “I thought we are safe”: Southern African lesbians’ experiences of living with HIV. Cult Health Sex, 15 Suppl, 34-47.
xxxiv Griffiths, K. More Visible Than Ever Before…Looking Back On Vienna 2010. AIDS Legal Quarterly. October 2010.
xxxv Positively UK. 2010. Raising The Voice And Visibility Of Lesbian And Bi Sexual Women Living With HIV. Presentation. 18th International AIDS Conference, Vienna.
xxxviFishman, S. J. & Anderson, E. H. 2003.