New CDC Surveillance Reveals Risks Among Transgender Women, Including HIV

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate 

On April 15, 2021, the U.S. Centers for Disease Control released a new special report on HIV infection, risk, and tertiary issues impacting transgender women. The report included a literature review and community survey among 1,608 self-identified transgender women in 7 US cities (Atlanta, Los Angeles, New Orleans, New York City, Philadelphia, San Francisco, and Seattle), which was conducted between late 2019 and early 2020.

The findings of the report could be considered startling to those unfamiliar with HIV data among transgender populations. However, advocates for transgender equality have been shouting about this issue for years. Despite the CDC issuing guidelines for collecting data on transgender people in 2015, many state and local health departments were slow to implement this guidance; from debate on language to a grueling process in the massive undertaking to update official HIV screening forms. Further down the “food chain”, contract providers did not necessarily have the funding to reprogram electronic health records to reflect collecting this information or did not prioritize doing so. As a technical issue, this is the least of concerns in reaching out to transgender people. Cultural competency is lacking, programs directed toward transgender people may be managed by cis gender people, creating a disconnect between the experience of a target audience and program design. The Denver Principles demand “nothing about us, without us” and, even in HIV, this part gets forgotten about when establishing or operating transgender programs.

Photo Source: CDC

Back to the CDC’s findings.

The special report found an HIV prevalence of 42% among participants with a valid HIV screening within the last 12 months (note: 3% of participants did not have a valid HIV screening within the last 12 months, all findings are self-reported). Of those tested, along race and ethnic identity, the highest rates of HIV prevalence were among Black (62%), Hispanic/Latina (35%), and American Indian/Alaska Native (65%) transgender women. The cities with the highest prevalence were Atlanta (58%), New York (52%), and Philadelphia (51%). Of prevention activities, participants were generally well-educated regarding pre-exposure prophylaxis (PrEP) at better than 90% overall, however, uptake was lagging at around 30%. Participants cited medical mistrust due to incidents of transphobia in medical settings, lack of information regarding interactions with gender-affirming hormone therapies, and lack of trans oriented PrEP marketing materials. 63% of self-reported HIV-positive participants reported receiving HIV related care within 1 month of diagnosis and 89% having received care within the year prior to interview. 

The most stunning findings of the study include 63% of participants reporting living at or below the federal poverty level and 17% being uninsured. As a result, unsurprisingly, 42% of participants had experienced homelessness in the last 12 months. The statistic that should receive the greatest attention but - also unsurprising as 2020 was the worst year on record for anti-transgender violence in the US – 54% of participants reported having experienced verbal abuse or harassment as a result of their gender identity. Additionally, 15% of participants reported having experienced verbal threats or physical attack resulting in rape.* 

*Editor's Note: the report refers to “forced sex” – this author will not coddle this experience. “Sex” without consent, either by force, threat, or coercion, is rape.

Advocates, myself included, argue the Trump administration’s anti-transgender agenda released a social contagion of permission to enact violence against transgender people, Black transgender women in particular. Despite the precedent set by the Supreme Court’s Bostock decision in 2020, several states have decided to make 2021 a record-breaking year in introducing anti-transgender legislation. Again, experienced advocates expect this pattern to result in more violence against us. 

This is of particular note, given the CDC’s report cited medical mistrust due to experiences of transphobia in medical settings. 

Small, yet meaningful steps that can be taken in the immediate: both private and public funders must change the metrics in which they consider funding transgender programming and acceptable “competency”. Funded entities must conduct transgender cultural competency at onboarding of all staff and at least once annually and demand their staff satisfy a post-training assessment as part of their employment. Funders must require these metrics in order for an entity to receive funding. Entities should not be “developing” new transgender programs but courting existing trans led by-for organizations to manage trans oriented HIV programing. 

The Denver Principles were meant for all of us, every one of us, every piece of us. And beyond our status we have failed to implement these cornerstone values into our HIV prevention efforts and care programs. 

For providers seeking resources on trans oriented HIV prevention materials, the CDC provides model materials at no cost to providers via the CDC’s Let’s Stop HIV Together campaign. You can order these and other materials here.

Additionally, "TRANSGENDER HEALTH: Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program" are educational resources published by the ADAP Advocacy Association. They include an infographic, and a policy white paper.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.