CDC studies causes of transgender women's higher HIV rates - STAT

This story has been updated with expert comment.

Transgender women, in particular those belonging to marginalized racial and ethnic groups, have disproportionately high rates of HIV. Yet so far, no standardized surveillance system has collected data that could provide insight into the factors that put people at higher risk for contracting the virus.

A survey of transgender women, developed by the Centers for Disease Control and Prevention, aimed to gather and assess behavioral data in relation to HIV prevention and risk for the first time. An analysis of the survey results, published Tuesday in the CDC’s Morbidity and Mortality Weekly Report, points to the high levels of social and economic marginalization that trans women experience as potential factors in the group’s higher risk for HIV. 

“It is no secret that trans people, trans women, and especially trans women of color face immense barriers in HIV prevention,” said Joseph Osmundson, a clinical assistant professor of biology at New York University and queer health advocate, who did not work on the report. “This new research not only formalizes this knowledge but addresses some of the underlying reasons, including increased rates of homelessness and transactional sex.”

More than 1,600 transgender women took the survey at sites across seven U.S. cities between 2019-2020. They were also provided with HIV testing. Overall, 42% of the participants tested were positive for HIV. That number jumped to 62% of Black trans women, compared to 35% of Hispanic and Latina trans women and 17% of white trans women.

Further analyses within the report focused on topics related to HIV exposure and other issues affecting trans women’s health, including access to and use of the preventative HIV medication pre-exposure prophylaxis (PrEP); experiences such as homelessness and sexual violence that correspond with having more condomless anal sex; and suicidal ideation. 

Among the report’s top conclusions: The discrimination that trans women face increases their exposure to conditions — including violence, homelessness, incarceration, and more — which in turn increases their risk of contracting HIV, the authors note. 

“Integrating housing services, behavioral health services, employment, gender-affirming medical care, and clinical care are important to improve the living circumstances and quality of life for transgender women,” they wrote.

Much of that change would need to happen at the government level, but clinicians can provide critical support through culturally responsive care that takes all aspects of a patient’s experiences into account, said Alex Keuroghlian, an associate professor of psychiatry at Harvard Medical School and the director of education and training programs at The Fenway Institute, which focuses on LGBTQ+ health research and policy. “We can’t think about gender-affirming care in a vacuum,” they said.

Use of PrEP

Among the respondents, more than 900 were HIV-negative and were therefore eligible to use PrEP. It’s often taken as a daily pill that can be 99% effective in reducing the risk of getting HIV through sex, though the majority of adults in the U.S. who might benefit are not taking it. 

Among the sample, 92% were aware of PrEP and over half (57%) had recently discussed it with a health care provider, but only about a third (32%) had recently used it. Those who had ever had transgender-specific health care, or currently had transgender-specific health insurance coverage, were more likely to use PrEP, along with those who had multiple sex partners or had condomless sex in the last year, and those who knew their last sex partner had HIV. Black, Hispanic, and Latina trans women were all more likely to use PrEP than their white counterparts. 

Despite relatively low uptake, the report’s findings were encouraging, the authors write, because the level of awareness was higher than in previous studies. 

Incidence of condomless anal sex

Another area of analysis looked at how psychosocial conditions (such as psychological distress, use of multiple drugs, and sexual violence) and structural ones (homelessness, exchanging sex for money, and incarceration) relate in combination with each other to the likelihood of having condomless anal sex. 

Anal sex without a condom is the main way that HIV is spread through sex, and nearly half had a positive HIV status in the sample group of 1,350 white, Black, and Hispanic or Latino respondents. About 55% reported that they had condomless anal sex. The more psychological and structural stressors that people experienced together, the more likely they were to do so, which is consistent with similar research performed on cisgender men who have sex with men.

The compounding factors affected transgender women of all races, but multiple drug use, sexual violence, and psychological distress were more common among white women, as was homelessness. Exchanging sex for money or drugs and incarceration were highest among Black and Hispanic respondents.

Employment discrimination

Access to health insurance, and therefore to affordable health care, is often directly dependent on employment in the U.S. About 10% of all survey respondents said they had been fired because of being transgender in the past year, and 32% reported trouble getting a job for the same reason. Seven out of 10 transgender women surveyed experienced at least one of these forms of employment discrimination in the last year. 

Among those who struggled to find a job, 62% had Medicaid coverage. While most of the survey respondents lived in states where the Medicaid program does cover gender-affirming care, those who didn’t were twice as likely to have trouble getting a job. Almost 22% of respondents who struggled to get a job were completely uninsured.

The results suggest that factors like employment discrimination, which was directly associated with poorer access to health care generally, may also lead trans women to engage in behavior, like survival sex work, that increases their risk of contracting HIV.

Nonprescription gender-affirming hormones

For many transgender women, hormone treatment is critical to combat gender dysphoria and other mental health struggles, but it can be difficult to access due to costs, insurance coverage problems, and a lack of access to inclusive medical providers. One analysis within the journal assessed nearly 1,200 respondents’ use of gender-affirming hormone treatments without a prescription, and so potentially without proper dosage, administration, or health monitoring. Taking hormones without medical supervision may lead to patients not understanding potential side effects. 

These barriers played out in the study: Transgender women who reported any recent health care use, or having insurance coverage for gender-affirming hormones, were less likely to use nonprescription treatment. But those who experienced homelessness or had to exchange sex for money or drugs were more likely. Younger people, ages 18-29, were also more likely to use nonprescription hormones.

The researchers note that future research should look at why people turn to nonprescription hormones. As anti-trans legislation targeting both youth and adults crops up across the country, it’s unclear how many transgender women may be affected by a lack of access to prescriptions.

Homelessness

Among 1,600 of the respondents, almost a third reported being homeless for at least one month out of the last year, with a median length of about six months. Periods of homelessness were also experienced by 55% of respondents who reported being evicted or denied housing because of their gender identity, and 58% of those who had been incarcerated. 

Addressing housing instability and integrating housing services with behavioral health services may also work as effective HIV prevention, the authors wrote. The factors associated with longer housing instability are some of the same factors that increase behavioral risk factors for HIV: living in poverty, experiencing violence and abuse, and a lack of social support.

Social support and suicidal ideation

Among the survey respondents, 60% experienced gender-based violence including verbal abuse (53%), physical abuse (26%), or sexual violence (15%) over the last year, and almost 18% experienced suicidal ideation. While this rate of suicidal ideation is actually lower than other studies focused on transgender people have found, it’s still much higher than that of the general U.S. population. 

Suicidal ideation was higher among young people (ages 18-24) compared to older groups, among those who had an unmet need for gender-affirming surgery, were HIV-negative, disabled, homeless, and reported drug use.

Three-quarters of all participants reported having high social support from significant others, while just 47% received similar support from family. Experiencing these forms of violence and harassment with low social support increased trans women’s risk of suicidal ideation.

While social support was generally protective against experiencing suicidal ideation for trans women who experience violence, the authors emphasize the need for more integrated and holistic approaches to abuse and harassment for when social support is not enough.

Policy implications

Outside researchers generally praised the CDC survey, which was able to reach a large number of trans women. However, Jennifer Barnes-Balenciaga, a New York City commissioner on Gender Equity, notes it still may fail to capture the full extent of the trans experience. This kind of research, she says, “it’s usually… not paying attention to the fact that transgender people are not just in need. There are transgender people that work inside of corporate America. They are trans, and they still have sex. There are trans women that work inside of hospital. They are nurses. They are doctors. They are lawyers. They are college students.“

Osmundson, the NYU researcher, said the new report should help guide policies to improve the health of trans women.  “While this research is essential, it remains our obligation to intervene,” he said. “Policies that reduce poverty, increase access to healthcare, and address homelessness for all can have an outsized effect for trans women, and including trans people as leaders of these efforts will be necessary to their success.”

If you or someone you know may be considering suicide, contact the 988 Suicide & Crisis Lifeline: call or text 988 or chat 988lifeline.org. For TTY users: Use your preferred relay service or dial 711 then 988.