Peru’s trans women remain a hard-to-reach population for the treatment of HIV/AIDS but the lack of access to care is, in part, due to widespread discrimination. Barbara Fraser reports from Lima.
When infectious disease specialist Eduardo Matos made an unexpected house call in 2016 on the request of a photographer who was documenting Lima’s transgender community, it was the beginning of a much bigger project.
The visit brought him to a trans woman living in a dilapidated rented room in a downtown neighbourhood of Peru’s capital, Lima, who was seriously ill.
The patient died of tuberculosis and AIDS, even though Peru’s Ministry of Health provides free treatment for these diseases—an outcome that is not unusual among trans women.
For Matos, this call opened a window into a world where transgender women struggle to survive. For many trans women, who often are rejected by their families, sex work is the only economic option, but widespread discrimination keeps them from receiving treatment for HIV and other illnesses.
Nearly two decades ago, Matos gave up on the idea of specialising in tropical diseases and began focusing on sexually transmitted illnesses, especially HIV; it was the greater need in the unit where he worked at Archbishop Loayza National Hospital, one of the largest public hospitals in Lima.
Despite publicity campaigns, the hospital still had a hard time reaching transgender women, who have a much higher prevalence of HIV/AIDS than the rest of the population.
In a country where about 30% of trans women are HIV positive, “you would expect the waiting room to be full of transgender women, and it wasn’t”, Matos says. “You would see gay men, you would see people from the general population, you would even see prison inmates, but we saw only one or two trans women.”
Trans women tend to shy away from health services in part because of discriminatory treatment, from sidelong glances to insistence on use of the masculine names on their identity documents instead of the names they choose to use. Moreover, trans women are absent from official health statistics, Matos says. “They’re invisible. They don’t even become visible when they die.”
“A large number of trans women who lived near the hospital were not going to their follow-up appointment [to pick up the results of rapid testing], even though we had diagnosed them in the field”, says José Luis Sebastián, who heads the Peru branch of the Los Angeles-based non-profit AIDS Healthcare Foundation (AHF), which began working with the hospital in 2016 to strengthen its antiretroviral therapy programme. “We lost them along the way or when they arrived at the hospital.”
In December, 2018, as a joint effort between the Peru Ministry of Health and AHF Peru, the Archbishop Loayza National Hospital opened a treatment area specifically for trans women at one end of the infectious diseases unit. Matos oversees the small wing designed to serve transgender women, which offers free hormone therapy as an incentive. The women also receive screening and treatment for HIV/AIDS and other sexually transmitted illnesses, counselling, and other health care.
The 6-month pilot project aims to reach 100 trans women. If successful, it could serve as a model for other hospitals around the country.
Since the opening of the ward, 64 patients have been enrolled, Sebastián says. The possibility of feminisation treatment helps to draw women to the unit. AHF Peru initially provided the free hormone therapy offered in the wing, with oestrogen and a testosterone blocker initially, although the Ministry of Health is expected to begin providing the hormones under a policy issued in 2016. Of the trans women enrolled, about 70% are HIV positive and 20% tested positive for tuberculosis, Sebastián says.
But getting trans women across the threshold of the hospital is only the first hurdle. Sheyla Ramírez, aged 52 years, who began her transition at age 13 years, acts as a bridge between the hospital and the trans community, visiting or calling women and encouraging them to use the services. She and another trans woman from AHF Peru are on the staff at the unit, greeting and accompanying the women. Using their own experience, they also help newcomers to understand what to expect from treatment.
It may take two or three visits to gain a woman’s trust, says Matos, who often must also convince newcomers that the hormone-induced physical transition will not go as quickly as they had hoped. It takes about 6 months to start to feel the changes, he says, and 2 years for maximum effect.
The pilot will be evaluated after 6 months, but Sebastián expects the project to continue with any adjustments that are needed. Besides providing a crucial service, Matos also sees the unit as a “golden opportunity” to gather social and health data to fill the gap in official statistics.
Women who visit the unit hope the idea will spread. On a recent afternoon, a 24-year-old who identified herself as Gahela Tseneg, who grew up in the southern Andean highlands, arrived for her third visit.
“There aren’t many places where [trans women] can get personalised treatment”, she says. “I would love to see the government put a unit like this in every region of the country.”
Taking various measures to increase HIV prevention among trans women in Peru, especially those engaged in sex work, would be cost-effective for avoidance of illness and early death, according to a study recently published in The Lancet Public Health that used mathematical modelling to calculate the cost-effectiveness of various prevention strategies.
The study examined the impact of two scenarios that involved increasing the use of condoms with clients and with stable partners; expanding antiretroviral therapy coverage, first to those with a CD4 cell count of less than 500 per mm3 and then to those with a count of 500 or more; and increasing pre-exposure prophylaxis using generic or brand-name drugs.
The less ambitious scenario would avert 47% of new infections among trans women sex workers, their clients, and their stable partners over 10 years, while the more ambitious options would avert 61% of new infections among those groups, according to the study. Both would be cost-effective if generic pre-exposure prophylaxis drugs were used, with a cost-effectiveness ratio of US$509 per disability-adjusted life-years averted for the first scenario and $1003 for the second.
“We tried to be very conservative [and to take] into account the limitations of the health system”, says Annick Bórquez of the Division of Infectious Diseases and Global Public Health at the University of California, San Diego, who led the study.
“There are low testing rates among trans women—this cannot work unless they get tested and that is linked to treatment services.”
The mathematical model used to analyse the scenarios considered activities such as promotion of condom use and training for health-care personnel. Bórquez had hoped to include measures that would address structural problems, such as reducing violence against trans women, but insufficient data on their effectiveness made that impossible. Future studies should examine the impact of integrated treatment, including things like hormone treatment and mental health care, as well as structural changes, she says.
Peru lags behind other Latin American countries in protecting the rights of transgender people. Although opening the unit for trans women is a step forwards, advocates say that differentiated hospital services are far from enough to ensure their health and welfare.
By focusing on HIV testing and treatment, the Peruvian Government is taking an epidemiological approach to a problem in which the underlying cause is the marginalisation of transgender people, says Alfonso Silva-Santisteban, a researcher at Cayetano Heredia University’s Centre for Interdisciplinary Research on Sexuality, AIDS, and Society in Lima. “The main problem is social exclusion, beginning with [the right to] identity.”
Trans women face a cascade of obstacles, says Juno Roche, a trans writer and rights campaigner based in England and Spain. Problems such as discrimination in the workplace, which pushes trans women into low-income jobs or into the sex trade, with its high rates of violence and drug use, affect both physical and mental health.
“There needs to be good equality law that names trans people”, Roche says. “You have to name trans people and understand what they go through, and then create laws around that.”
Legislation and policies should take a rights-based approach to health and wellbeing, says Silva-Santisteban, who also participated in the modelling study. While Argentina, Bolivia, Uruguay, and several federal districts in Mexico have passed gender identity laws, Peru lacks comprehensive legislation on the rights of transgender women and men.
In December, 2016, the Peruvian Ministry of Health issued technical guidelines for health care for trans women to prevent and control sexually transmitted illnesses and HIV/AIDS. While the guidelines call for non-discrimination, they focus largely on diagnosis and treatment of illnesses and provision of hormone therapy, noting that the therapy can help to keep patients connected with health-care services.
“These small steps are good, but from the standpoint of what the [trans] population needs, the standpoint of international law and commitments that Peru has signed, and the standpoint of public health, they are insufficient”, Silva-Santisteban says.
Other countries have laws, programmes, and services that can serve as models for Peru, he adds. “It’s not necessary to invent the steps.”