Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program (ADAP)

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ADAP Advocacy Association announced earlier this week that it has launched a new project to improve access to care and treatment for transgender men and women living with HIV/AIDS. The project – “Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program (ADAP)” – aims to raise awareness about issues confronting transgender men and women living with HIV/AIDS who also access care and treatment (or whom could benefit from such care and treatment) under ADAP, as well as provide useful resources and tools to the communities serving them.

According to the Centers for Disease Control & Prevention (CDC), transgender communities in the United States are among the groups at highest risk for HIV infection.[1] The CDC reports the following key demographic data:[2]

• Highest percentage of newly identified HIV-positive test results was among transgender people (2.1%), compared to HIV-positive test results among males (1.2%), and by females (0.4%);
• Among transgender people in 2010, the highest percentages of newly identified HIV-positive test results were among racial and ethnic minorities:
• Blacks/African Americans comprised 4.1% of newly identified HIV-positive test results;
• Latinos comprised 3.0%;
• American Indians/Alaska Natives and Native Hawaiians/Other Pacific Islanders (both 2.0%);
• 73% of the transgender women who tested HIV-positive were unaware of their status; and
• HIV prevalence for transgender women was nearly 50 times as high as for other adults of reproductive age.

Among male-to-female and female-to-male transgender persons, there exists a high prevalence of clinical depression (44.1%), anxiety (33.2%), and somatization (27.5%).[3]  The Department of Family Medicine and Community Health, Medical School, University of Minnesota concluded that the minority stress model necessitated education to “…confront social structures, norms, and attitudes that produce minority stress for gender-variant people; enhance peer support; and improve access to mental health and social services that affirm transgender identity and promote resilience.”[4]

Furthermore, transgender persons experience numerous healthcare-related disparities. The extent of this barrier to health care is unknown, since “U.S. health surveillance systems infrequently include measures to identify transgender respondents or monitor the health of this underserved and marginalized population.”[5]

A cross-sectional, clinic-based sample in Massachusetts between 2001-2002 yielded some interesting findings between transgender and non-transgender adults. Among them:[6]

1. the prevalence of HIV, substance abuse, and smoking did not differ significantly for transgender and non-transgender patients; 
2. transgender patients were more likely to endorse a lifetime suicide attempt and ideation compared to non-transgender patients (p<0.05);
3. transgender patients disproportionately reported social stressors (violence, discrimination, childhood abuse) relative to non-transgender patients (p<0.05).

Despite spotty data, agreement exists on the following:[7]

• Studies reveal high HIV prevalence rates among transgender women in the United States.
• Black/African American transgender women are more likely to have HIV than transgender women of other races/ethnicities.
• Many social and structural factors pose challenges to preventing HIV among transgender people.

The CDC concluded, “Insensitivity to transgender identity can be a barrier for those who are diagnosed with HIV and seek quality treatment and care services. Research shows transgender women with diagnosed HIV infection are less likely to be on antiretroviral therapy (ART) or achieve viral suppression. Furthermore, few health care providers receive adequate training or are knowledgeable about transgender health issues and their unique needs.”[8]

There is no concrete data on the number of male-to-female and female-to-male transgender persons, nor gender-nonconforming persons living with HIV-infection accessing services under ADAP. That said, extrapolating data from the National ADAP Monitoring Project measured against CDC data suggests there is a need for gender-variant, culturally competent awareness and guidelines designed to better serve this underserved community enrolled in ADAP (as well as those persons eligible, but not enrolled).

Whereas excellent resources exist to promote transgender HIV testing, [11] as well as available programs, faith communities, and healthcare services, [12] presently nothing exists specific to ADAP serving the transgender community. There exists a need to raise awareness among key stakeholders – among them, ADAP Directors, community service providers, and state/local advocacy organizations – about existing and emerging issues confronting the transgender community. Furthermore, there is a need to model existing best practices[13] to ADAP across the 50 states and territories in the United States.

“It is important to focus on discussing and identifying competency measures that would aid in providing solid data collection in this area – especially with respect to the number of transgender individuals accessing services under ADAP – as well as expanding access for same by way of competency,” summarized Jen Laws, an independent policy consultant specializing in various aspects of healthcare policy and focusing on the needs of the HIV affected and transgender communities. “The ADAP Advocacy is committed to improved cultural competency for the transgender community in healthcare, in general, and what that means for the population accessing ADAP, specifically.”

The purpose of the project – “Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program” – is to raise awareness about issues confronting the transgender community accessing care and treatment under the AIDS Drug Assistance Program, as well as provide useful resources and tools to the communities serving them. 

To that end, key elements of the project include:

1. Infographic on Ryan White/ADAPs & Serving Transgender Community;
2. Community Forum on Transgender Health & Provider Friendly Care;
3. Educational Webinar on Ryan White/ADAPs & Transgender Health;
4. White Paper on Model Policy for Ryan White/ADAPs Serving Transgender Clients; and
5. Twitter Chat on Ryan White/ADAPs & Transgender Health.

To learn more about the ADAP Advocacy Association's Transgender Health Project, please email info@adapadvocacyassociation.org. 

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[1] Centers for Disease Control & Prevention, “HIV Infection among Transgender People,” August 2011; last viewed online at http://www.cdc.gov/hiv/transgender/pdf/transgender.pdf. 
[2] Centers for Disease Control & Prevention, “HIV Among Transgender People,” December 17, 2015; last viewed online at http://www.cdc.gov/hiv/group/gender/transgender/index.html. 
[3] American Journal of Public Health, “Stigma, mental health, and resilience in an online sample of the US transgender population,” May 2013; last viewed online at http://www.ncbi.nlm.nih.gov/pubmed/23488522. 
[4]  Sari L. Reisner, MA, ScD, et al, LGBT Health, “Transgender Health Disparities: Comparing Full Cohort and Nested Matched-Pair Study Designs in a Community Health Center,” April 10, 2014; last viewed online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4219512/. 
[5] Sari L. Reisner, MA, ScD, et al, LGBT Health, “Transgender Health Disparities: Comparing Full Cohort and Nested Matched-Pair Study Designs in a Community Health Center,” April 10, 2014; last viewed online at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4219512/.
[6] U.S. Centers for Disease Control and Prevention, “HIV Among Transgender People,” Apri 18, 2016; last viewed online at http://www.thebody.com/content/63509/hiv-among-transgender-people.html?ap=1200. 
[7] U.S. Centers for Disease Control and Prevention, “HIV Among Transgender People,” Apri 18, 2016; last viewed online at http://www.thebody.com/content/63509/hiv-among-transgender-people.html?ap=1200.
[8] American Journal of Public Health, “Stigma, mental health, and resilience in an online sample of the US transgender population,” May 2013; last viewed online at http://www.ncbi.nlm.nih.gov/pubmed/23488522.
[9] National Alliance of State and Territorial AIDS Directors (NASTAD), “National ADAP Monitoring Project: 2016 Annual Report,” page 16, February 1, 2016.
[10] National Alliance of State and Territorial AIDS Directors (NASTAD), “National ADAP Monitoring Project: 2016 Annual Report,” page 17, February 1, 2016.
[11] The Center of Excellence for Transgender Health, University of California, San Francisco, “Transgender HIV Testing Toolkit,” April 11, 2016; last viewed online at http://transhealth.ucsf.edu/trans?page=ev-nthtd-2016. 
[12] Transcending Transgender Program and the Alameda County Office of AIDS Administration, “Transgender Resource Guide,” 2016; last viewed online at http://www.acphd.org/media/269820/transgender_resource_guide.pdf. 
[13] JoAnne Keatley, MSW, YMSM+LGBT Center of Excellence, “Transgender People - Exploring Diversity and Health Service Needs,” August 28, 2015; last viewed online at https://vimeo.com/141821792.