Director's Blog: Identifying and Overcoming Barriers to Transgender HIV Testing

Each year on April 18th, we observe National Transgender HIV Testing Day (NTHTD). NTHTD is an annual event that highlights the importance of routine HIV testing and status awareness as part of our continued focus on HIV prevention and patient-centered care for transgender and gender non-binary individuals.

An estimated 1 million adults in the United States are transgender¹. Transgender individuals, particularly transgender women, are at a high risk for HIV infection and disproportionately affected by HIV². Among transgender women, recent data show that HIV is more common among Black/African American and Hispanic/Latina persons³. In 2018, adult and adolescent transgender individuals made up 2 percent of new HIV diagnoses in the United States and dependent areas, with most of the new HIV diagnoses among individuals ages 25–34⁴. As recommended by the Centers for Disease Control and Prevention (CDC), individuals at increased risk of HIV infection should be tested for HIV at least annually⁵.

Transgender individuals with HIV may face a broad range of challenges that affect their health outcomes, including socioeconomic factors, stigma, discrimination, social rejection and exclusion, unique barriers to seeking HIV testing, limited transgender-specific data and research, and health care providers who lack knowledge of transgender issues.

To learn more about these challenges and discuss solutions, I invited my colleague Dr. Karen L. Parker to have a conversation. Dr. Parker is an expert in sexual and gender minority (SGM)-related research and Director of the National Institutes of Health (NIH) Sexual and Gender Minority Research Office (SGMRO). Like OAR, SGMRO is a part of the Division of Program Coordination, Planning, and Strategic Initiatives, in the NIH Office of the Director. We covered some critical issues in this discussion:

Dr. Goodenow: What unique or critical concerns do transgender individuals face regarding HIV and AIDS?

Dr. Parker: Transgender individuals encounter unique barriers in accessing health care, which have significant implications for HIV/AIDS prevention, screening, and treatment within this population. Several documented concerns include experiences of trauma, discrimination, and minority stress. These experiences often lead to mistrust, fear, and avoidance of health care systems and providers. Additionally, there are socioeconomic concerns to consider. These populations encounter higher rates of poverty and unemployment, limiting their access to health insurance and/or the ability to pay for care. Transgender individuals are also more likely to engage in risky health behaviors such as substance use (including intravenous/injectable drugs) and unprotected sex, both of which are significant risk factors for HIV transmission.

Dr. Goodenow: What obstacles do transgender individuals face that stand specifically in the way of getting tested for HIV, and how can we address these obstacles through health research?

Dr. Parker: Interventions to mitigate and treat HIV/AIDS for transgender people should take into consideration the barriers to care that I mentioned above. There is also a need for training culturally competent providers to ensure welcoming and affirming clinical environments for transgender patients, which is vital for building trust within the community. A welcoming and affirming clinic will make it more likely that these patients are getting screened routinely and treated adequately to help reduce rates of HIV transmission. Additionally, HIV/AIDS prevention and treatment education, and related dissemination efforts, should be inclusive and representative of transgender people. These interventions should also be informed by health research involving these communities.

Dr. Goodenow: Can you tell us about the variety of NIH programs that are underway to advance our understanding of health disparities that put transgender individuals at a greater risk for HIV/AIDS and other health conditions? I know, for example, that SGMRO conducts Sexual & Gender Minority Health Research Regional Workshops, Listening Sessions, and the SGM Administrative Supplements Program.

Dr. Parker: Those are all great examples of the types of work SGMRO undertakes to help enhance our understanding of the health disparities encountered by transgender individuals and other SGM populations. The SGM Administrative Supplements Program, for example, provides additional funds to current NIH-funded grants to include SGM populations or SGM health-related research questions. Several supplements have been awarded to investigators with HIV/AIDS-related projects to include SGM populations, including transgender people. Additionally, SGMRO co-sponsored the recently released National Academies (NASEM) consensus study report on Understanding the Well Being of LGBTQI+ Populations. This report, conducted by an expert panel, is an extensive review of the available data and identifies future research needs and recommendations to advance health outcomes for SGMs.

Dr. Goodenow: Are there any other steps that NIH can take to facilitate HIV testing and reduce risk to improve health outcomes for transgender individuals?

Dr. Parker: As we know, research and science inform clinical practice, which leads to better health outcomes. To reduce HIV transmission and improve health outcomes for transgender people, we need to do more work in ensuring health research is inclusive of gender-diverse populations. Currently, research is limited due to inconsistency or lack of sexual orientation and gender identity (SOGI) in data collection, and there are no current guidelines in place to standardize measures. For that reason, SGMRO is proud to announce the launch of another NASEM consensus study to provide recommendations and guidelines for collecting SOGI measures across various domains, including administrative, clinical, and research use. We hope the upcoming consensus study report will better inform policy and programmatic efforts to improve data collection and yield better health outcomes for all SGM communities. This report will also be vital in shaping the next wave of scientific inquiry within this field.

Dr. Goodenow: Thank you, Karen. This discussion has been very productive and will inform OAR’s commitment to advance research to end the HIV pandemic and improve HIV/AIDS health outcomes for all people.

The OAR encourages stakeholders to get involved with efforts to reduce HIV stigma and promote testing and treatment for transgender individuals. To get involved and find tools to use, visit the CDC’s National Transgender HIV Testing Day webpage and Let’s Stop HIV Together Campaign resources for transgender individuals.

Maureen M. Goodenow, Ph.D.
NIH Associate Director for AIDS Research and
Director, NIH Office of AIDS Research

Karen L. Parker, Ph.D., M.S.W.
Director, NIH Sexual & Gender Minority Research Office

¹ Centers for Disease Control and Prevention. HIV and Transgender People. Available at https://www.cdc.gov/hiv/group/gender/transgender/. Accessed April 28, 2021.

² Centers for Disease Control and Prevention. April 2019. HIV and Transgender Communities. Available at https://www.cdc.gov/hiv/policies/data/transgender-issue-brief.html.

³ Centers for Disease Control and Prevention. HIV Surveillance Report—Special Report: HIV Infection, Risk, Prevention, and Testing Behaviors Among Transgender Women, National HIV Behavioral Surveillance 7 U.S. Cities, 2019–2020. Infographic. Available at https://web.archive.org/web/20240218002207/https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-special-report-number-27-infographic.pdf.

⁴ Centers for Disease Control and Prevention. HIV and Transgender People: HIV Diagnoses. Available at https://web.archive.org/web/20230929084351/https://www.cdc.gov/hiv/group/gender/transgender/hiv-diagnoses.html. 

⁵ Centers for Disease Control and Prevention. April 2021. HIV Surveillance Report—Special Report: HIV Infection, Risk, Prevention, and Testing Behaviors Among Transgender Women, National HIV Behavioral Surveillance 7 U.S. Cities, 2019–2020. Available at https://www.cdc.gov/hiv/pdf/library/reports/surveillance/cdc-hiv-surveillance-special-report-number-27.pdf.