This woman shouted for ‘Kevin’ to come to the desk. I shrunk in my seat, hoping she would see the note on the chart about my gender change. But she just kept yelling for Kevin. I finally had to get up and cross the room in a walk of shame. Will I ever go back there? No way.
– Connie, 31, Miami, Florida
Connie is HIV-positive, one of many transgender women in Florida facing the challenge of finding health care that is safe, gender-affirming, and affordable. The 1.4 million transgender and gender-non-conforming people in the United States generally face multiple barriers, from family rejection to non-acceptance and abuse at school, and pervasive discrimination in employment, housing, and health care. Social and economic marginalization as a result of these factors lead to higher rates of suicide, poverty, violence, and incarceration, particularly for trans people of color. This is a severe and compound environment of risk for HIV that demands a robust response – one that the state of Florida, and the federal government, are failing to deliver.
Nationally, rates of HIV are declining as treatment becomes more effective and, if administered regularly, can eliminate the potential for transmission of the virus. Rates of HIV among transgender men appear to be low, though more study is needed. But among transgender women, rates of new HIV infection have remained at crisis levels for more than a decade. One of four trans women, and more than half of African-American trans women are living with HIV, rates that are far higher than the overall prevalence of HIV in the US of less than one percent. Transgender women are testing positive for HIV at rates higher than cisgender men or women, and racial disparities are stark: HIV prevalence is more than three times higher among African-American transgender women than their white or Latina counterparts.
Since 2010, the National HIV/AIDS Strategy has recognized trans women as a “key” population whose needs must be addressed. Trans people frequently experience disrespect, harassment, and denial of care in health care settings, and many avoid seeking health care as a result. HIV policymakers know what to do: ample evidence indicates that to be effective, health care services for trans individuals must be affordable, gender-affirming, and should be integrated with transition-related care. This is particularly important for HIV care. If forced to choose, trans women will frequently prioritize Hormone Replacement Therapy (HRT) over HIV care, making it essential to combine these services in a “one-stop shop.”
Numerous pilot programs across the country have demonstrated that providing integrated HIV care that engages and respects trans women is feasible and successful in reducing HIV risk and improving health outcomes. But this investigation of HIV prevention and care for trans women in south Florida found that trans women are navigating a difficult landscape that state and federal authorities have not done nearly enough to address. Services are fragmented, integrated care is limited, and cost and lack of insurance leave medical and mental health care out of reach. To the extent that such services exist, they are more a result of community demand and local advocacy efforts rather than federal or state policy, which contain no targeted requirements or standards to ensure that trans women are receiving the services they need.
The problem is not money. As a state with one of the country’s highest rates of HIV infection, Florida receives hundreds of millions of dollars from the Ryan White program, the federal government’s primary vehicle for funding HIV prevention and treatment services. The state HIV budget has increased more than 15 percent in the last three years. Nationwide and in Florida, more than half of people living with HIV receive care through a Ryan White funded program. Ryan White services are important for transgender women – when they stay in treatment in Ryan White programs, their health outcomes are significantly better than when they do not.
Despite a wide network of public and private providers in the metropolitan areas of Miami and Fort Lauderdale, only a handful of HIV clinics are consistently identified as providing what is recognized best practice, and to some experts, the standard of care, for transgender women. State HIV officials told Human Rights Watch that all Ryan White funded clinics “welcome” trans patients, but there was no systemic monitoring of the issue to determine whether this is the case, and evidence from the ground suggests otherwise. In fact, Human Rights Watch found that many transgender women experienced disrespect, harassment, and denial of services in health care settings, and that such experiences often result in avoidance of health care altogether.
The Ryan White program covers medications for patients under the AIDS Drug Assistance Program (ADAP). The federal government sets core criteria, but states can also cover medications for needs and conditions related to HIV, such as mental health and hepatitis C medications. In 21 states, ADAP covers hormone replacement medications for the purpose of gender transition – an important part of ensuring that HIV care meets the health needs of transgender women. Florida is not one of these states, and federal policy does not require it to do so.
Underlying this lack of targeted government policy is the lack of accurate information about HIV risk and infection among trans women in Florida. The failure to collect accurate or complete HIV data among trans people is an ongoing problem. Decades into the epidemic, neither the state nor the federal government know how many trans women are living with HIV. Most states, including Florida, have only partially implemented federal recommendations for how to improve data collection for HIV among trans populations, and though Florida’s data on trans women is improving, they remain incomplete. Estimates developed from other experts indicate that the number of transgender people living with HIV in Florida may be five to ten times higher than reported by the state.
Given that government response is driven by data, the undercounting of HIV prevalence means trans women are left out of many federal and state programs intended to monitor or improve HIV services. Often perceived by policymakers as a population too small to help, conditions for trans women on the ground remain unknown, unchanged, or inadequate. Over thirty years into the epidemic, the stark reality is that trans women are at an extremely high risk of HIV, but as a distinct population remain largely invisible to the federal and state HIV surveillance and monitoring systems that guide government response.
For this report, Human Rights Watch investigated access to health care, including HIV prevention and treatment, for women of trans experience in south Florida. We administered 125 survey questionnaires among trans women in Miami-Dade and Broward counties, two counties with the highest rates of new HIV infections in the country. These questionnaires, and the more than 100 interviews with trans women, their advocates, and HIV service providers indicated that many trans women in south Florida, particularly women of color, experience high HIV risk as a result of multiple factors, with poverty and lack of health insurance standing out as primary vulnerabilities. More than 63 percent of survey participants reported income of less than $10,000 per year, more than half were unemployed, and one of three were in “unstable” housing situations. This data is consistent with national surveys showing that many trans people live in extreme poverty and are three times more likely to be unemployed than those in the general population.