A Springboard for Transgender Health Advocacy
An international collaboration strengthens research into the HIV-related care needs of transgender people
Evidence-based research can be a springboard for transgender health advocacy, says Rena Janamnuaysook, co-founder of the Tangerine Clinic, which provides transgender healthcare services in Bangkok, Thailand. Rena cites the example of data from the Tangerine Clinic being used to advocate for the inclusion of gender-affirming care under Thailand’s Universal Health Coverage. But more research about the HIV-related care needs of transgender people is urgently needed.
That’s the impetus behind the TransCohort, a collaboration between the Institute of HIV Research and Innovation (IHRI)/Tangerine Clinic in Thailand, the coordinating site for The South East Asian Transgender Cohort Study (SEATrans), and research cohorts in Argentina, Brazil, Chile, and Mexico.
By enlisting the research networks of two regional members of IeDEA, a global HIV epidemiology research consortium established by the U.S. NIH—the Asia-Pacific component and the Caribbean, Central and South America network for HIV epidemiology (CCASAnet)—the TransCohort assures not only a shared research methodology but also data that can be harmonized and made inter-operable across countries and contexts.
The Asia-Pacific component of IeDEA is co-led by amfAR’s TREAT Asia program and the Kirby Institute at the University of New South Wales in Sydney, Australia, while CCASAnet is led by Vanderbilt University Medical Center in the U.S.
“With improved data…we hope to better understand the risk factors for HIV acquisition among trans women, as well as better understand HIV outcomes in trans people with HIV,” says Anna Person, MD, of Vanderbilt University, about the goals of the project. “We hope to understand barriers to PrEP use for trans people at risk for HIV in these cohorts, and further elucidate challenges to caring for these special populations in terms of substance use, mental health, social support, violence, and stigma.”
Though there are similarities across countries, many of the challenges faced by transgender people depend on the nuances of national healthcare policies and personal histories, as participating researchers note.
In Argentina, transgender people have achieved legal recognition and universal access to healthcare, yet barriers to care remain, says Inés Arístegui, PhD, of Fundación Huésped in Buenos Aires. Though the transgender community has become more empowered to engage in care and trans-sensitive health services have increased, “these efforts have not replicated evenly [throughout] the country and there are disparities in access and availability of resources.”
“Trans people belong to one of the most vulnerable populations in Argentina,” says Dr. Arístegui, “mainly as a consequence of social stigma and discrimination, which has led many trans people into internal migration, low levels of education, unemployment, and unstable housing, among other [barriers to care]. In our country, trans people have a higher prevalence of physical and mental problems—ranging from HIV, other STIs, TB, depression, to alcohol and drug use and self-harm behavior—than the general population.”
Transgender people are part of an HIV-vulnerable population in Brazil, as well. Says Emilia M. Jalil, MD, PhD, of the Oswaldo Cruz Foundation (FIOCRUZ): “Despite [the availability of] HIV prevention through the Brazilian Public Health System, including oral PrEP, trans women remain the group most affected by HIV in Brazil. They are a challenging to engage population. Even those who are linked to health services often do not see themselves at risk or have competing interests (which is [understandable] due to the [hardships] that they face) that hinder their engagement in HIV prevention.” Transgender women who could have been accessing HIV testing and prevention tools often only finally engage when they return with HIV, notes Dr. Jalil. Prevention engagement, then, is key.
Despite HIV care at no cost to users, says Dr. Jalil, engagement is also hindered by a healthcare system that perpetuates ignorance about welcoming and caring for people who are transgender, as well as transphobia, discrimination, and HIV stigma. “[Trans women] have huge gaps in accessing services, including gender-affirming services, endocrinological care, and hormone therapy. Another major gap is providing mental support and mental healthcare.”
Ratee Taesombat, of the Foundation of the Thai Transgender Alliance for Human Rights, also lists mental health as a top priority: “Sexualized substance use and mental health are intersectional and are associated with HIV and other health-seeking behaviors. We found that research to inform service design and policy change around harm reduction in the context of sexual activities and integration of mental health is urgently needed in our country.”
Moving forward, the TransCohort will continue to conduct retrospective analyses with harmonized data, says Dr. Person, and then design a collaborative, people-centered prospective study.
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