CDC: HIV Is an 'Unacceptable Burden' on 4 in 10 Transgender Women

In a group of more than 1,600 transgender women living in major U.S. cities, 42% have HIV. The data, which the Centers for Disease Control and Prevention (CDC) published last week, was collected through interviews conducted by the agency between 2019 and 2020.

Nearly two-thirds of the American Indian/Alaska Native and Black/African American study participants tested positive for HIV, as did one-third of the Hispanic/Latina transgender women surveyed, compared to 17% of White transgender women.

The CDC is calling it one of the most comprehensive surveys of transgender women in the U.S.

“These data provide a clear and compelling picture of the severe toll of HIV among transgender women and the social and economic factors—including systemic racism and transphobia—that are contributing to this unacceptable burden,” Demetre Daskalakis, MD, MPH, director of CDC’s Division of HIV/AIDS Prevention said in a statement. “Reducing HIV in these communities will require that public health and other providers of social and prevention services design innovative and comprehensive status-neutral solutions to overcome barriers to whole person prevention and care.”

High Risk of HIV Exposure

Researchers from the CDC interviewed 1,608 transgender women living in Atlanta, Los Angeles, New Orleans, New York City, Philadelphia, San Francisco, and Seattle. Rates of HIV-positive transgender women were highest in Atlanta, New York City, and Philadelphia, where more than half of participants in each place had the disease.

“Being that I’ve been resident in both areas within the last 10 years, it does not surprise me in that they have the highest number,” Jennifer Barnes-Balenciaga, LGBTQ liaison for State Representative Park Cannon, District 58 in Atlanta and co-director of Crystal LaBeija Organizing Fellowship, tells Verywell. These cities are home to a large population of Black and Hispanic/Latina transgender women—groups disproportionately affected by HIV.

Many of the women experienced known HIV risk factors. The household income of two-thirds of participants was at or below the federal poverty level and 17% did not have health insurance. In the year before the interview, 42% had experienced homelessness and 17% had been incarcerated. One-third of the study participants had been involved in sex work—a metric associated with a higher risk of HIV exposure.

People interested in participating were screened for eligibility requirements and interviewed for about 40 minutes. Participants were compensated for recruiting others for the study, with the goal of including 200 transgender women from each city. However, the base pay for participating in the study, Barnes-Balenciaga says, is “kind of offensive—to be paid $25 for your life story, your life’s understanding. … That brings about trauma.”

The study was published ahead of National Transgender HIV Testing Day on April 18, in an effort to bring awareness to the need for improved testing among transgender women and other groups of people.

Prevention and Intervention

One of the most effective proven prevention methods for HIV is preventive drug treatment called Pre-Exposure Prophylaxis (PrEP). People who are at high risk of HIV exposure from sex or injection drug use can take a pill daily, which significantly decreases their chances of developing an infection.

The report found that only 32% of HIV-negative participants reported using PrEP, though 92% were familiar with it. The CDC says previous studies indicate that this disparity could be due to “medical mistrust due to experiences of transphobia, lack of trans-inclusive marketing, and a concern about drug interactions between hormones and PrEP.”

“That’s the medical term of putting it,” Barnes-Balenciaga says. “In real terms, I would say, if I don’t have to take a pill, I don’t want to take it.”

Barnes-Balenciaga says that the underuse of PrEP also has much to do with the challenges of being able to access a health provider who can offer and prescribe it. Increasing access to services like PrEP and HIV treatments is “urgently” needed, the CDC states.

Alongside the use of PrEP, condom use and access to clean needles can also help prevent HIV transmission.

Challenges in Providing Care

Among the barriers to HIV care uptake, the authors list the status of a trans woman’s gender affirming process. More than half of both HIV-negative and HIV-positive transgender women included in the study stated their desire for gender affirming surgery. Improved access to gender affirming medications like hormones may increase trans people’s likelihood of prioritizing HIV prevention and treatment.

“If I’m someone who’s participating in, perhaps, sex work and my money is divvied up between going to a prevention group or taking a hormone shot, then I’m probably going to take a hormone shot,” Barnes-Balenciaga says.

“For trans women and women of trans experience, the priority will always be to be a woman,” Barnes-Balenciaga says. “Even if I’m not healthy if I can get my hormone shot…a hormone shot is certainly more necessary in the mind.”

Prevention and care efforts must go beyond traditional clinical settings to include community-based organizations, according to the CDC. Doing so may not only expand access to care but can also help transgender women access “culturally appropriate” intervention measures.

“If you have a physician who is not within the understanding of modern use of medications and have arcane ways as it pertains to prescribing or even administering certain medicines, then your word is one thing and what the doctor may feel is necessary for you is another,” Barnes-Balenciaga adds.

Next Steps in Preventing and Treating HIV

Barnes-Balenciaga says she is a woman of trans experience who is HIV positive and undetectable. She says her fiancé, a man of trans experience, has struggled to access PrEP. In trying to prevent him from contracting HIV, Barnes-Balenciaga says she’s become aware of the challenges faced by the community of transgender men and how they overlap with some of the hurdles transgender women must overcome. Current research on HIV in the community of transgender men is relatively lacking—this is a disparity Barnes-Balenciaga says needs to be addressed for a better understanding of how HIV impacts all transgender people.

The CDC report is part of a national effort to reduce new HIV infections by 90% by 2030 through the Ending the HIV Epidemic: A Plan for America initiative. Making testing more equitable and accessible can provide a step in the right direction.

“HIV testing is the gateway to all treatment and prevention, and expanding testing means more transgender women are aware of their status and can engage in the care they need—if we help them connect to appropriate and responsive care services,” Joseph Prejean, PhD, acting deputy director for surveillance, epidemiology and laboratory science in CDC’s Division of HIV/AIDS Prevention said in the statement. 

To meet the goal of greatly reducing HIV infections, Barnes-Balenciaga says there must be a focus on community building and creating a better understanding of the experiences of transgender people among healthcare organizations.

“Trans people are hundreds of years old in their movement,” Barnes-Balenciaga says. She is skeptical that by 2030 the CDC and other organizations will “have a total understanding of this community and its behaviors. But what could happen is a fostering and a development of leadership and of individuals who may be helpful in the passing down of understanding in these communities.”