HIV Prevention and Care Data

HIV Testing

The Centers for Disease Control and Prevention (CDC) recommends HIV testing for all adults and adolescents from ages 13 to 64 at least once in their lifetimes. Click here to learn more about HIV Testing.  Although it is estimated that one in seven Americans living with HIV is unaware of their HIV status,1 one systematic review found that fewer than half of transgender women living with HIV have been diagnosed.2

PrEP for Prevention of HIV

Why PrEP?

Health care providers may consider discussing PrEP as an option with transgender patients who are at high risk of HIV infection.

Transgender people, especially transgender women of color, have a high risk of contracting HIV.3 Because of this risk, some transgender women may benefit from taking pre-exposure prophylaxis (PrEP). Click here to learn more about PrEP.

What Is Known About Transgender People and PrEP

Most of what is known about PrEP for transgender women comes from a subgroup analysis of the iPrEx study,4 a randomized controlled trial of PrEP that enrolled 2,499 participants across the world. Of the study participants, 339 (14%) were transgender women. In the original iPrEx publication,4 of 2,499 MSM, 29 identified as female (i.e., transgender women).* In a subsequent subgroup analysis,1 men were categorized as transgender women (n=339) if they were born male and either identified as women (n=29), identified as transgender (n=296), or identified as male and used feminizing hormones (n=14). Using this expanded definition, among transgender women, no efficacy of PrEP was demonstrated. There were 11 infections in the PrEP group and 10 in the placebo group (HR 1.1, 95% CI: 0.5-2.7). By drug level testing (always vs. less than always), compared with MSM, transgender women had less consistent PrEP use OR 0.39 (95% CI: 0.16-0.96). In the subsequent open-label extension study, one transgender woman seroconverted while receiving PrEP and one seroconversion occurred in a woman who elected not to use PrEP.

*See Note on Terminology regarding HIV research published in academic journals.

PrEP and Hormone Therapy

Hormone therapy is a priority for many transgender people, and many use hormone therapy at some point in their lives. Transgender women may have concerns about potential interactions between PrEP and hormone therapy, which usually consists of estrogens and anti-androgen medications (such as spironolactone). However, there are no known or predicted drug interactions between the medication used for PrEP, oral TDF/FTC (tenofovir disoproxil fumarate/emtricitabine), and feminizing hormones.6, 7 These studies were done with hormone doses significantly lower than those typically used by transgender persons. Although tenofovir levels in blood were lower among the transgender women in the iPrEx study who reported taking hormone therapy compared to those who were not, the authors speculate that the difference is not the result of drug interactions. Instead, it is caused by poor medication adherence.4 Studies to assess the effectiveness PrEP and medication adherence among transgender women are underway.

To learn about prescribing PrEP click here.

Health care providers can inform patients that PrEP medication has not been reported to diminish the effectiveness of hormone therapy (estrogens and anti-androgens) and that hormone therapy has not been reported to alter the efficacy of PrEP.

Caring for Transgender Patients Living with HIV

Few studies have assessed HIV outcomes among transgender patients, so data on the HIV care continuum in this population are limited. Nevertheless, the evidence available suggests that many transgender women do not achieve viral suppression and other important milestones along the HIV care continuum.
Many transgender women living with HIV are not receiving HIV treatment. Available research indicates that many are neither engaged in care nor virally suppressed on ART8. Click here to learn more about HIV Treatment.

Obstacles to Health Care for Transgender People

Access to care. Across the continuum, one of the foremost obstacles is lack of access to care. Historically, transgender women have reported high rates of being uninsured compared to the general population9, likely because of poverty and employment discrimination. Even among those who are insured, stigma and discrimination can pose formidable barriers to health care. Transgender people may delay or avoid care entirely because of concerns about discriminatory treatment by medical staff. When they do access care, transgender people may hide their transgender identity to avoid poor treatment, which can complicate health outcomes.

It is important that, when transgender people seek medical care, health care providers welcome them and provide medically appropriate services. Services should include discussions about sexual practices and assessment of trauma across the lifetime.

From the Perspective of a Health Care Provider:

“You could have been made fun of the entire way to the health provider’s office, and when you get there you may still face stigma and discrimination. Even in the doctor’s office you might face incorrect pronoun use, misnaming, hostile waiting rooms, or being asked to use bathrooms that don’t support your gender identity.”  – West Coast health care provider

Housing instability and physical or emotional trauma may exist. More research is needed on barriers to HIV care. However, housing instability and recent physical or emotional trauma10 have both been associated with failure to achieve viral suppression. In one survey of transgender people living with HIV, the most commonly cited obstacles to accessing HIV care included lack of transportation, poor treatment by health care staff due to being transgender, and financial constraints.11 In a qualitative study, transgender women living with HIV described avoiding medical care when they were first diagnosed because of past negative experiences and uncomfortable encounters in health care environments. For example, one participant in the study noted, “I go by [female name], but my ID still says [male name]. With me looking like I do, if they call me [male name] in front of the other patients, I might just walk out.12

To help address these barriers, all health care providers can take steps to provide transgender women with. Health care providers can also ask transgender women living with HIV about potential barriers—housing, transportation and financial problems, abuse or violence, and other obstacles to care. Providers can also assist patients by making referrals to social workers, mental health providers, or programs for survivors of violence, as needed. The trauma and stress induced by stigma and discrimination, as well as the related effects of under- and unemployment, homelessness, lack of access to care, and lack of insurance, can create a great burden on the mental health of transgender people. Research has found that, compared to the general population, transgender people have higher rates of mental health issues and suicide attempts.13,14

Transgender women may prioritize other health issues over HIV treatment. In a survey of 157 transgender people—predominantly transgender women—living with HIV, respondents’ top health concern was receiving patient-centered health care without stigma, followed by hormone therapy and mental health care.9 ART was the fifth most important health priority. Developing a care plan that addresses all the health concerns of transgender people in conjunction with HIV treatment can improve ongoing engagement and trust.

One way that some providers can address these competing priorities is to collocate or integrate services relevant to the local transgender community. The colocation or integration of patient-centered care, mental health care, and HIV care can reduce such barriers as transportation and enable greater continuity and engagement in health care. Fenway Health,external iconexternal icon Callen-Lorde Community Health Centerexternal icon and the Center of Excellence for Transgender Healthexternal icon serve as examples of integrated services and offer provider resources.

*Transgender is used here as an umbrella term to describe people who have a gender identity that is different from their sex listed on their birth certificate. Gender identity is on a spectrum. It is important to keep in mind that although some transgender people prefer the binary classification of men or women, many reject it. Instead, they may have other identities, such as non-binary, gender expansive, genderqueer, or trans-feminine/trans-masculine. These terms emphasize a broader view of gender and may provide a more nuanced understanding of what it means to be a transgender person.

A note regarding HIV research published in academic journals: An important consideration in research with transgender people is the challenge to accurately classify transgender women for surveillance/research purposes. Not all jurisdictions collect data on gender identity that include transgender people, and some researchers may use older methods that can misclassify transgender women as men who have sex with men. This can also happen as some transgender people may not identify themselves as transgender in health care settings due to fear of discrimination or previous negative experiences. This mix of limitations can result in over- or under-estimating the number of transgender people. As such, it is important to consider methodologies when interpreting data and surveillance findings. As the field is developing newer and more precise ways to identify transgender identity for research and surveillance purposes, it is important to consider methodological approaches, particularly for studies that include both men who have sex with men and transgender women. The most accurate method uses a two-step process, including two questions: “What is your current gender?” AND “What sex were you listed as at birth?” The large majority of studies cited in this document use a two-step process, however one is a meta-analysis and likely includes studies with a one-step process to determine gender identity. For more information about using a two-step process, please refer to the section Collecting Sexual Orientation and Gender Identity.

  1. Centers for Disease Control and Prevention. Monitoring selected national HIV prevention and care objectives by using HIV surveillance data—United States and six dependent areas—2013. HIV Surveillance Supplemental Report 2015;20(No. 2). Available from: http://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillancereport_vol20_no2.pdf pdf iconpdf icon[PDF – 6 MB]
  2. Herbst JH, Jacobs ED, Finlayson TJ, McKleroy VS, Neumann MS, Crepaz N; HIV/AIDS Prevention Research Synthesis Team. Estimating HIV prevalence and risk behaviors of transgender persons in the United States: a systematic review. AIDS Behav. 2008 Jan;12(1):1-17.
  3. Becasen JS, Denard CL, Mullins MM, Higa DH, Sipe TA; Estimating the Prevalence of HIV and Sexual Behaviors Among the US Transgender Population: A Systematic Review and Meta-Analysis, 2006-2017. Am J Public Healthexternal icon. 2018 Nov 29:e1-e8. doi: 10.2105/AJPH.2018.304727.
  4. Deutsch MB, Glidden DV, Sevelius J, et al. HIV pre-exposure prophylaxis in transgender women: a subgroup analysis of the iPrEx trial. Lancet HIV. 2015 Dec;2:e512-9.
  5. Grant J, Mottet LA, Tanis J, et al. Injustice at every turn: a report of the National Transgender Discrimination Surveypdf iconexternal icon [Internet]. Washington, DC: National Center for Transgender Equality and National Gay and Lesbian Task Force. 2011 [cited 2016 Aug 26]. 220 p.
  6. Radix A, Sevelius J, Deutsch MB. Transgender women, hormonal therapy and HIV treatment: a comprehensive review of the literature and recommendations for best practices. J Int AIDS Soc. 2016 Jul 17;19(3 Suppl 2):20810. doi:10.7448/IAS.19.3.20810
  7. Sevelius JM, Keatley J, Calma N, Arnold E. “I am not a man”: Trans-specific barriers and facilitators to PrEP acceptability among transgender women. Global Public Health. 2016;11(7-8):1060.
  8. Santos GM, Wilson EC, Rapues J, Macias O, Packer T, Raymond HF. HIV treatment cascade among transgender women in a San Francisco respondent driven sampling study. Sex Transm Infect. 2014 Aug;90(5):430-3.
  9. Grant J, Mottet LA, Tanis J, Harrison J, Herman JL, Keisling M. Injustice at every turn: a report of the National Transgender Discrimination Survey [Internet]. Washington, DC: National Center for Transgender Equality and National Gay and Lesbian Task Force. 2011. [cited 2016 Aug 29]. 220 p.
  10. Machtinger EL, Haberer JE, Wilson TC, Weiss DS. Recent trauma is associated with antiretroviral failure and HIV transmission risk behavior among HIV-positive women and female-identified transgenders. AIDS Behav. 2012 Nov;16(8):2160-70.
  11. Houston Area Ryan White Planning Council. Access to HIV care among transgender and gender non-conforming people in Houston [Internet]. Houston, TX: Houston Area Ryan White Planning Council. 2013. [cited 2016 Aug 30]. Available from: http://www.rwpchouston.org/Publications/TG%20Special%20Study%20Report%20APPROVED%2003-14-13.pdfpdf iconexternal icon
  12. Sevelius JM, Patouhas E, Keatley JG, Johnson MO. Barriers and facilitators to engagement and retention in care among transgender women living with human immunodeficiency virus. Ann Behav Med. 2014 Feb;47(1):5-16
  13. National Academy . The health of lesbian, gay, bisexual, and transgender people: building a foundation for better understanding. Washington, DC: The National Academies Press; 2011.
  14. Healthy People 2020. Lesbian, gay, bisexual, and transgender health. U.S. Department of Health and Human Services. Available from: http://www.healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=25external icon.