Update on the HIV care continuum for transgender adults
Positively Aware Tonia-Poteat
By Tonia Poteat, PhD, PA-C, MPH

Experts estimate that there are about 25 million transgender people globally, and 1.4 million transgender-identified people live in the United States. 1,2 A growing body of research indicates that transgender people are more likely to be living with HIV compared with the overall population. In 2015, the National Center for Transgender Equality led a survey of over 27,000 transgender people in the U.S.3 The survey asked about HIV status: 1.4% of respondents reported living with HIV, about 5 times the estimate for the general population of the United States (0.3%).

Transgender women of color who were on hormone therapy were more likely to engage in care and have an undetectable viral load if their HIV care provider was also the person who prescribed their hormones.

Not surprisingly, HIV impacted some transgender communities more than others. The prevalence of HIV among transgender men matched the overall estimate for the U.S. (0.3%). Gender non-binary individuals had a prevalence of 0.4%; and transgender women had a prevalence of 3.4%. Nearly one in 5 (19%) of black transgender women reported living with HIV—13 times higher than the overall prevalence of HIV in the study.

This self-reported information on HIV status from so many transgender people is incredibly important. However, not everyone knows their HIV status or is willing to report it on a survey. So, data from studies that include HIV testing provide important information for understanding the epidemic. The Centers for Disease Control and Prevention (CDC) have reported data on CDC-funded testing events across the U.S. from 2009–2011.4 Of the 2,047 HIV testing events among transgender men, 0.4% resulted in positive tests; and of the 11,771 testing events among transgender women, 2.9% were positive. Among transgender women, African Americans were most likely to have an HIV-positive testing event (54%), followed by Latina (30%) and white (7%) transgender women.

The CDC also supports the National HIV Surveillance System which collects data on newly diagnosed HIV infections across the country. 5 From 2009–2014, they received over 2,000 reported cases of HIV in transgender people: 1,974 among transgender women and 361 among transgender men. Consistent with other data, African Americans made up over half the people diagnosed with HIV. Most transgender people diagnosed with HIV were living in the South, and about one in four were diagnosed with AIDS within three months of their HIV diagnosis. In other words, they were diagnosed late in the disease.

These numbers make it clear that there’s a great need for accessible, culturally appropriate, medically competent HIV care for transgender people, particularly transgender women of color. The Ryan White HIV/AIDS Program provides public funding for HIV care services across the country, and collects data on all recipients of Ryan White services. Almost 6,000 transgender individuals received Ryan White services in 2015, including 5,553 transgender women and 327 transgender men.6

Transgender people were similarly likely to be retained in care (79% vs. 81%), but transgender women, specifically, were less likely to have a suppressed viral load (77% vs. 83%) compared with cisgender people. The good news is that this represents a 12% increase in viral suppression for transgender women compared with 2011. Among all transgender people receiving Ryan White services, retention in care was lowest for individuals who were younger and who had unstable housing. Viral suppression was lowest for individuals younger than 24 years old, African American or black, and with unstable housing.

As part of their Medical Monitoring Project (MMP), the CDC has published information on over 5,700 transgender women living with HIV receiving medical care in the U.S.7 They did not report on transgender men due to low numbers. In their analysis, they found no difference between transgender women and cisgender people in the percentages of those who were prescribed antiretroviral therapy. However, a significantly lower percentage of transgender women had 100% antiretroviral dose adherence (78% vs. 87%) and durable viral suppression (51% vs. 61%).

It is likely that these differences in adherence and viral suppression are driven by social and economic marginalization of transgender women of color. In the MMP, they found that more than 80% of transgender women were African American or Latina, and had an annual income less than $20,000; more than 20% reported homelessness; and over 30% did not have any health insurance. These rates of poverty, housing instability, and lack of insurance were significantly more common among transgender women than cisgender people. As would be expected, this resulted in a greater proportion of transgender women who needed supportive services.

Unfortunately, needs for basic services like food and housing were less likely to be met for transgender women compared with cisgender people. These findings suggest that unmet basic needs impede transgender women’s ability to effectively engage in and benefit from HIV care and treatment. In fact, preliminary baseline data from a project designed to improve engagement of transgender women of color in HIV care found that homelessness and lack of transportation were associated with poor adherence, and that transience and lack of transportation were associated with lack of viral suppression. Importantly, transgender women of color who were on hormone therapy were more likely to engage in care and have an undetectable viral load if their HIV care provider was also the person who prescribed their hormones.

The U.S. Transgender Survey was released at the end of 2016, and provided data from transgender participants living with HIV. Eighty-nine percent had seen a health care provider for HIV care in the last 12 months. Reasons given for not receiving HIV care included not having health insurance, not being able to afford HIV care, not knowing where to go for HIV care, not feeling sick enough to seek care, relying on a higher power, and only recently finding out about their HIV status.

The vast majority (82%) of transgender people living with HIV reported that they had CD4 count and viral load testing within the previous six months. Eighty-seven percent of participants living with HIV had been prescribed antiretroviral therapy. Eighty-one percent reported currently taking their ART medications. Of those who had been prescribed antiretroviral therapy, nearly two-thirds (64%) reported taking it as prescribed all the time. Nearly half (45%) of respondents who were not taking their antiretroviral therapy medication all the time reported forgetting as the main reason. Other reasons included not being able to afford the medication, not having health insurance, concerns about interactions with other medications, concerns about weight gain, and simply not wanting to take their meds.

The Transgender Law Center led a national needs assessment specifically for transgender people living with HIV.8 When participants were asked to identify their top five health priorities, gender-affirming and non-discriminatory care topped the list followed by hormone therapy and its effects, while antiretroviral therapy was fifth. The study also found that a higher percentage of transgender people had suppressed virus when their providers were supportive of their gender identity rather than hostile—or even neutral. Reported viral suppression was also lower when medical providers restricted access to hormone therapy based on adherence to antiretroviral medications. In other words, when a provider required a transgender person to be adherent to antiretroviral medication before providing access to hormone therapy, the transgender person was less likely to achieve viral suppression.

Clearly, the evidence supports the importance of gender-affirming medical care in promoting engagement in HIV care and suppression of viral load among transgender people and the need to address concerns about drug-drug interactions with hormone therapy. Importantly, transgender people, particularly transgender women, may have even greater challenges with housing, income, and food security than other people living with HIV; and it is more likely that these needs are not met. Recent experiences of violence have also been associated with lack of viral suppression among transgender women.9

The difficult circumstances that lead to challenges with HIV care engagement do not occur in a vacuum. Widespread stigma, discrimination, and violence against transgender people (transphobia) are critical barriers to care engagement. Low educational attainment due to school bullying, limited employment opportunities due to discrimination and poor education, and often breathtaking risk of physical and sexual violence all contribute to the poverty, homelessness, and psychosocial trauma that drive poor HIV outcomes. In the first three months of 2017, there have already been eight reported murders of transgender women of color in the U.S. It is likely that countless other murders and non-lethal violence went unreported.

It’s not hard to imagine that immediate survival and management of chronic trauma would trump engagement in HIV care. Health care environments that incorporate gender-affirming, trauma-informed, culturally and medically competent HIV care are most likely to successfully engage transgender populations and reduce the disparities we currently see in HIV outcomes. 

Dr. Tonia Poteat is an Assistant Professor in the Department of Epidemiology at Johns Hopkins Bloomberg School of Public Health, whose research focuses on LGBT Health and HIV. She is a certified HIV Specialist by the American Academy of HIV Medicine and has provided primary care for transgender individuals since 1996.

Scholarly citations and references

  1. Flores AR, Herman JL, Gates GJ, Brown TNT. How Many Adults Identify as Transgender in the United States?, 2016.
  2. Winter S, Diamond M, Green J, et al. Transgender People: Health at the Margins of Society. The Lancet; 388 (10042): 390-400.
  3. James SE, Herman JL, Rankin S, Keisling M, Mottet L, Anafi M. The Report of the 2015 U.S. Transgender Survey. Washington, DC: National Center for Transgender Equality; 2016.
  4. Habarta N, Wang G, Mulatu MS, Larish N. HIV Testing by Transgender Status at Centers for Disease Control and Prevention–Funded Sites in the United States, Puerto Rico, and U.S. Virgin Islands, 2009–2011. American Journal of Public Health 2015: e1-e9.
  5. Clark H, Babu AS, Wiewel EW, Opoku J, Crepaz N. Diagnosed HIV Infection in Transgender Adults and Adolescents: Results from the National HIV Surveillance System, 2009–2014. AIDS Behav 2016.
  6. Administration. HRaS. Ryan White HIV/AIDS Program Annual Client-Level Data Report 2015. December 2016. hab.hrsa.gov/data/data-reports. (accessed March 24, 2017).
  7. Mizuno Y, Frazier E, Huang P, Skarbinski J. Characteristics of Transgender Women Living with HIV Receiving Medical Care in the United States. LGBT H 2015; 2(00).
  8. Chung C, Kalra A, McBride B, Roebuck C, Sprague L. Some kind of strength: Findings on health care and economic wellbeing from a national needs assessment of transgender and gender non-conforming people living with HIV. Oakland, CA: Transgender Law Center, 2016.
  9. 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 and Behavior 2012; 16(8): 2160-70.