More than 100 transgender women in Lima, Peru, have joined an amfAR-funded study that aims to determine if combining HIV prevention and treatment with gender-affirming medical care will help these women access health services and remain in care.
Transgender women have the highest prevalence of HIV in Peru—30 percent in Lima, according to one study, yet the least access to services.
“Stigma and discrimination are powerful barriers that prevent transgender women from participating in society,” said principal investigator Dr. Javier Lama of Asociación Civil Impacta Salud y Educación (IMPACTA), a nonprofit that conducts HIV/AIDS research. “The staff of most public clinics are unfriendly toward these women, and often have no idea about their unique medical needs.”
Many transgender women use female hormones to feminize their appearance and affirm their gender. In Peru, they often must resort to using black market hormones, which can pose significant health risks.
IMPACTA and its research partners—The Fenway Institute and EPICENTRO, Lima’s only community-based organization providing support and health services to transgender women and men who have sex with men (MSM)—have developed an innovative model that combines feminizing hormone therapy with essential HIV services.
The project, known as Feminas, relies heavily on a transgender women’s task force of community leaders, health outreach workers, and activists, to help guide the research team. The task force also raises awareness of the program and provides ongoing input from Lima’s trans communities.
“We tried to ensure that transgender women played a central role in the project,” said study coordinator Leyla Huerta, herself a transgender woman and longtime trans activist. She added that the task force has been instrumental on many levels, including helping to open a safe space for transgender women (Feminas House) and building recognition of Feminas in their local communities.
“During this first year, the girls have been able to find a space where they can be themselves and where they are made to feel valued and part of this important work,” she said.
Over the past few years there has been a growing interest in community-based participatory research—doing research with a community rather than on it, said co-investigator Dr. Kenneth Mayer, medical research director of the Fenway Institute.
Earlier HIV research in Peru focused mainly on MSM; transgender women were often overlooked. “A program that makes it clear that we want their involvement—and that we are not going to do anything without their input—is essential because there is a long legacy of mistrust,” Mayer said. “If they are going to engage, they really have to feel that they have a voice and a stake in the process.”
Such a collaboration builds trust, said co-investigator Dr. Sari Reisner, an affiliated research scientist at the Fenway Institute. “It has not only a greater chance of success, it helps the community feel empowered and want to participate.”
And transgender women especially need that empowerment, Huerta said. From an early age, they are ostracized, she said. “By rebuilding that confidence, that sense of ‘you are important, you are part of this, you too can get to where we are,’ we’ve begun to enable each of them to move forward,” Huerta said. “I think that’s fundamental—being able to rely on our experience and creating solutions that move us forward.”
Advocacy efforts have produced encouraging results: the Peruvian Ministry of Health has recently approved the first-ever policy to provide integrated care for transgender women within government health centers that includes feminizing hormone therapy to facilitate access to HIV and other treatment services.