NHBS-Trans Sheds Light on HIV Prevalence Among Transwomen in the United States

By: Ranier Simons, ADAP Blog Guest Contributor

Transgender women have disproportionately higher rates of HIV. It Is estimated that 14% of transwomen in the United States are living with HIV. Numerous studies exist examining HIV in various populations and subgroups. However, data on the mechanisms of HIV in the transgender community is lacking. The Centers for Disease Control & Prevention (CDC) uses data to determine who is most at risk for HIV, and that data comes from healthcare providers. Unfortunately, for a long time, there was no mandate for providers to count transgender patients. Historically, transgender women were categorized as gay and bisexual men, although they have vastly different needs. The 2015 update to the National HIV/AIDS Strategy prioritized data collection for trans people, and its mandate went into effect in 2018. Recently, the CDC released data from a systematic biobehavioral study conducted to examine HIV risk factors among transwomen.[1,2,3]

Photo Source: CDC

The CDC developed a surveillance system named National HIV Behavioral Surveillance Among Transgender Women (NHBS-Trans).[1] The purpose was to gather data specific to transgender women regarding HIV prevention, risk factors, testing services, and other social determinants affecting HIV treatment and overall health. From 2019 to 2020, the study gathered data from 1,609 transgender women from seven U.S. urban areas: Atlanta, Los Angeles, New Orleans, New York City, Philadelphia, San Francisco, and Seattle.[1] Trained interviewers administered anonymous questionnaires utilizing computer tablets and offered free blood rapid HIV testing. The participants were selected through respondent-driven sampling. This means that after an initial seed group of participants was identified through a referral from a community-based organization, they were asked to go out into their communities and recruit others. The study revealed that many factors contribute to the high rate of HIV among transwomen, with discrimination being one of the leading causes.

Approximately 42% of the study participants tested positive for HIV. Among the black subjects, 62% were living with HIV, 35% of the Hispanic and Latino participants, and 17% of the white participants.[2,4] The study data showed that the disproportionately high rate of HIV was due to factors such as lack of access to PrEP, discrimination in employment and healthcare access, homelessness, and even violence and harassment.[2,4]

Among all the participants, 17% had no health insurance, 7% had not visited a health provider in the past year leading up to the study, and 63% had household incomes at or below the poverty level. Additionally, 42% had experienced homelessness in the previous 12 months leading up to the study, 17% had been incarcerated, and 34% had received money or drugs in exchange for sex.[4] Employment discrimination was intertwined with a lack of healthcare access. People usually get healthcare coverage through their employment. Over 32% of the participants reported having great difficulty finding employment, with 10% stating they had been fired due to being transgender.[3,4] Without employment, many were without healthcare insurance. Lack of health insurance results in no access or poor access to HIV care and treatment, lack of access to PrEP, and lack of access to gender-affirming care.

Photo Source: iStock | Rights Purchased

Participants who were on Medicaid in states where Medicaid did not cover gender-affirming care were twice as likely to have difficulty finding employment.[3] Lack of employment leads to homelessness and housing instability. Moreover, difficulty finding employment leads some transgender women into sex work for survival, which is a high-risk factor for HIV transmission as well as an avenue into possible incarceration.[4] Lack of gender-affirming care also adversely affects HIV treatment and prevention. Studies have shown that transgender women receiving gender-affirming care are less likely to contract and transmit HIV.[5] This is due to the health education they receive with the care. Additionally, meeting the basic needs of identity allows transgender women to focus on other aspects of their health. Without gender-affirming healthcare, some transgender women take non-prescription hormones, which are potentially damaging to their health. Improper dosages, poor quality of medication, and lack of medical guidance can result in additional poor health outcomes. Moreover, some participants reported not seeking out PrEP or being inconsistent with their medicines out of fear of drug interactions with their hormone therapy. The study highlights the need to couple gender-affirming care with HIV prevention and treatment.

The study also revealed data regarding abuse and harassment. Approximately 54% of the transgender women in the study reported verbal abuse or harassment because of their identity, with 27% reporting physical abuse.[4] Of those reporting physical abuse, 15% reported the abuse from a sexual or intimate partner. Lack of social support and healthy surroundings adds to the mental stress and instability of the lives of these transgender women, which can also lead to illicit drug use as a way to cope. Eighteen percent of the participants had suicidal thoughts. Seven percent had previously made plans, and 4% had attempted suicide.

The study is not genuinely national since the sampling is from specific urban environments. However, it does highlight the dire need for more research to gather robust data regarding transgender women and HIV. Potentially, data can influence policymakers to create policies to facilitate beneficial access to HIV and gender-affirming care that improves their lives and respects their identities. It is essential to provide safe spaces where transgender women can receive culturally competent care coupled with access to medically sound interventions, prevention, and treatment specific to their needs. Policy intervention is also needed to remove transgender discrimination regarding employment and housing.

[1] Kanny D, Lee K, Olansky E, et al. Overview and Methodology of the National HIV Behavioral Surveillance Among Transgender Women — Seven Urban Areas, United States, 2019–2020. MMWR Suppl 2024;73(Suppl-1):1–8. DOI: http://dx.doi.org/10.15585/mmwr.su7301a1

[2] Adamczeski, R. (2024, January 28). Transgender women have a higher risk of HIV infections. A new CDC report reveals why. Retrieved from https://www.advocate.com/news/transgender-women-hiv-infections-discrimination

[3] Adamczeski, R. (2024, January 29). The real reason trans women have high HIV rates. Retrieved from https://www.hivplusmag.com/transgender/trans-women-high-hiv-rates

[4] Centers for Disease Control and Prevention. HIV Infection, Risk, Prevention, and Testing Behaviors Among Transgender Women—National HIV Behavioral Surveillance, 7 U.S. Cities, 2019–2020. HIV Surveillance Special Report 27. Retrieved from http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html. Published April 2021.

[5] Owen, G. (2023, April 28th). Surprising study indicates trans women in gender-affirming care contract HIV less often. Retrieved from  https://www.lgbtqnation.com/2023/04/surprising-study-indicates-trans-women-in-gender-affirming-care-contract-hiv-less-often/

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.