Stacy Cohen, MPH, is Chief of the Evaluation, Analysis, and Dissemination Branch at the Health Resources and Services Administration’s (HRSA) HIV/AIDS Bureau (HAB), Division of Policy and Data.
How long have you been working in HIV, and what motivated you to get involved with this public health issue in particular?
I have been working in HIV since the mid-1990s, starting when I became involved in my university’s LGBTQ group. That was at the beginning of the highly effective HIV treatment era and you could see the hope in people’s eyes. However, HIV was still devastating my queer and transgender community and stigma and discrimination were high, especially for racial and ethnic minorities. I saw this struggle among many of my friends and I, too, was not a stranger to poverty, trauma, and discrimination, nor the impact they can have on a person’s life and livelihood. Through all of these lenses, I saw many inequalities and barriers to healthcare and health-sustaining opportunities for queer and transgender people. These experiences moved me in a way that nothing ever had, and I knew I needed to be deeply involved in the work. Since that time, it has been my mission to help improve the lives and wellbeing of people living with HIV and to increase access to and engagement in meaningful, compassionate, and culturally relevant health care.
I have had a variety of paid and unpaid positions that led me to where I am today. I started at a Ryan White HIV/AIDS Program-funded organization delivering meals to people with AIDS. Later I became involved with research on health disparities and HIV. That motivated me to go back to school to obtain a Bachelor of Science in Public Health and then a Master of Public Health (MPH) degree.
I became the HIV and STD surveillance manager for the state of South Carolina, which gave me an intimate look at the striking epidemic in the Deep South. That position led me to work at the Centers for Disease Control and Prevention (CDC) as an Epidemiologist in the HIV Surveillance Branch. At CDC, I realized the potential to have a tremendous positive impact on the epidemic and the lives of people with HIV through data analysis and interpretation, and identification of health disparities and gaps in prevention and care.
I found my voice and natural ability to translate these data for programmatic use and policy decision-making for prevention, program implementation, and clinical care and treatment. I have been fortunate to continue that work in my current position, where I lead the national evaluation study portfolio and data analysis and dissemination efforts for HRSA’s Ryan White HIV/AIDS Program (RWHAP), in addition to several implementation science activities.
Through the Ryan White HIV/AIDS Program, HRSA served more than 9,400 transgender clients in 2017. How does HRSA’s Ryan White HIV/AIDS Program tailor its outreach and services to reach transgender people in particular?
There are several mechanisms by which the RWHAP works with and for the transgender community. First, education and training, which comes in two forms: cultural competency and meaningful involvement. One crucial part of engaging people of trans experience in care and treatments is ensuring cultural competence system-wide, meaning staff at all levels from the front desk to every person on the care team. The HRSA RWHAP AIDS Education and Training Centers (AETC) Program trains medical, dental, and allied health professionals on culturally-relevant health care practices, including those for the transgender community.
In addition, an integral part of the RWHAP is meaningful involvement of PLWH in the planning and implementation of activities. We understand that stigma and discrimination can often lead to limited opportunities for transgender people. Therefore, the HRSA HIV/AIDS Bureau works to increase opportunities for transgender people, such as with the BLOC initiative: Building Leaders of Color. This initiative provides opportunities for people living with HIV to receive education and training to participate in RWHAP planning bodies and work as part of medical and support care teams, boards of directors, and other mobilization efforts. The BLOC initiative focuses in on people of color living with HIV and has a specific track designed specifically for transgender women of color.
Another important activity is the testing of innovative models and interventions to improve HIV-related health outcomes for people living with HIV through the HRSA RWHAP’s Special Projects of National Significance Program (SPNS). For example, one previous SPNS initiative focused specifically on transgender women of color living with HIV. This initiative had nine demonstration sites that designed, implemented, and evaluated interventions to improve timely entry, engagement, and retention in quality HIV care, and each of the nine interventions resulted in an implication manual outlining the intervention and process. These manuals are available online for anyone who would like to implement them and can be found at TargetHIV.org, which is our repository of RWHAP resources. One current initiative I want to highlight is called “Using Evidence-Informed Interventions to Improve Health Outcomes for People Living with HIV”, or E2i. This initiative has four focus areas, which include improving HIV outcomes among transgender women, improving HIV outcomes among black men who have sex with men, identifying and addressing trauma among people living with HIV, and integrating behavioral health services in primary care settings. The outcome of E2i is to produce and disseminate toolkits that enable rapid and easy replication of these interventions in other RWHAP settings, as well as other non-RWHAP settings.
This is just a brief overview, but all of these HRSA efforts, in combination with the high-quality HIV care and treatment by the RWHAP providers, have contributed to significant increases in viral suppression for the trans community receiving RWHAP-funded HIV medical care, specifically for transgender women. Proof of these programs efforts is in the numbers: viral suppression among transgender women was 62% in 2010 and was 81% in 2017; for transgender men in 2010 it was 49% and was 84% in 2017. This is an indication of really good progress.
There are severe racial disparities among trans people living with HIV and 44% of trans women living with HIV were Black. What factors are contributing to this stark disparity?
There’s a complex array of social, structural, and environmental factors that contribute to these disparities. More specifically, the lived experiences of many transgender women include the intersection of racism, transphobia, discrimination, stigma, medical mistrust, and lack of culturally competent providers and culturally relevant healthcare practices for transgender clients. These issues can lead to under- or unemployment, food insecurity, and housing insecurity, just to name a few. To better understand this disparity, look at Maslow’s Hierarchy of Needs. The very basics of life for survival are food, shelter, and personal safety, but these are often unmet for transgender people. After that, comes safety and security of one’s environment, which includes having employment, resources, and health. The compounding challenges experienced by transgender women drastically changes the focus of life from self-care to survival, which can lead to higher-risk activities in order to meet those very basic needs in life.
Of the transgender women you serve, 11% have unstable housing, over 75% live at or below 100% of the federal poverty level. How do you specifically address those issues?
HRSA’s RWHAP specifically works with people of low income who are uninsured and underserved. The program functions as a resource to help decrease barriers to accessing care and treatment for people living with HIV. As such, the program provides a comprehensive system of care and support services to facilitate successful engagement and care outcomes. This includes housing and food assistance, as well as medical care and medication. Many organizations and clinics funded through the RWHAP have high levels of competence in working with transgender clients, so that facilitates decreasing medical mistrust and other barriers to care for transgender women.
National Transgender HIV Testing Day is April 18. What is your message to the trans community on this day?
My main message would be to seek knowledge, get tested, and be in control of your own health. I think one of the best things we can do for ourselves in many situations is to let go of the fear we hold and seek knowledge instead. Knowledge is power. Knowing your HIV status gives you the opportunity to have power and control over your own health and body. Educating yourself and taking action is self-care, while also caring for your intimate partner.