People don't think about transgender people in the picture of AIDS. In the Village, for years, for decades, there were transsexuals, male to female, which is what I'd like to talk about -- the Village has always had tons of them. Basically on every block lived one or a few of them. Slowly, the AIDS epidemic came up, and it engulfed everyone. I can tell you that now that I've been living here; there is nothing, there is hardly anything.
-- AIDS in the Transgender Community
These words were written by Nora Molina in 1996 and are still true today, over 20 years later. Nora was an out, HIV-positive, transgender Latina -- a former sex worker and peer educator at the Gender Identity Project (GIP) at NYC's LGBT Community Center. The epidemic eventually claimed her life in 2009.
I had the good fortune to work with and learn from Nora in 1998 and 1999, when we both worked as peer educators at The Center. Together, we conducted outreach to transgender clubs and street sex workers. Nora was rarely seen without her bicycle and was always the only one with a helmet in the clubs we visited. She was a formidable and inspiring sight on the street.
Building the Movement
Leaders like Nora were the roots of today's transgender movement and helped build the GIP. It was the first transgender-driven, peer counseling and empowerment HIV prevention program in NYS and has been a flagship program for transgender and gender non-conforming (TGNC) people for more than 26 years. It began in 1989, led by transgender activists Riki Anne Wilchins and Christian O'Neal, who founded Survivors of Transexuality Anonymous (STA). In 1991, they worked with Dr. Barbara Warren to create the GIP. The Center took the lead on numerous other TGNC firsts in the 1990s, including partnering with Callen-Lorde to create the first transgender medical clinic in NYC. The Center also produced "Safe-T-Lessons: HIV Prevention for the Transgender Community" (a transgender education and HIV prevention film), brought providers and community members together in the first Transgender & Transexual Health Empowerment Conference, and partnered to help create the first NYC transgender HIV needs assessment. This early needs assessment documented many issues TGNC people still confront, including provider prejudice and insensitivity, lack of knowledge of TGNC-issues, economic obstacles, and so forth.
Major strides have been made since the turn of the century. In 2002, after three years of advocacy by the GIP and others, New York City added discrimination protections based on gender identity and expression to the City's Human Rights Law. In 2006, after two years of advocacy by The Center and other partners, the NYC Department of Homeless Services released its groundbreaking Transgender and Intersex Policy, to help TGNC people get equal access to housing. In 2012, after two years of negotiation by The Center and other key partners, the NYPD revised its Patrol Guide to help ensure that police officers treat TGNC people with dignity and respect. And this year, The Center partnered with six other trans-driven programs and NYC Councilman Ritchie Torres to open the Bronx Trans Collective -- the city's first multiservice center dedicated to transgender people.
Creating an Advisory Group
The GIP's peer-driven model also amplified the voice of the TGNC community. In July 2015, after seventeen years working to address HIV in trans communities, I delivered the keynote address at the Transgender Health Symposium of the NYS AIDS Institute's "LGBT Health: Beyond the Epidemic" conference. I shared my critique of the failure of current HIV prevention approaches to address TGNC people and my concerns that measures such as PrEP would fail to successfully affect HIV with TGNC New Yorkers.
In response, and in face of the minimal inclusion of TGNC people in the process that created the Blueprint for Ending the Epidemic in NYS, the AIDS Institute asked me to help convene a TGNC Advisory Group. The purpose of this diverse group was to advise on specific actions that should be taken to address HIV in TGNC communities.
We worked with Carmen Vasquez, the Director of the LGBT Health & Human Services Unit for the NYS AIDS Institute, and Associate Director Kraig Pannell. Group members included Erin Alexander, Nicole Bowles, Jonovia Chase, Sean Coleman, Lyndon Cudlitz, Carrie Davis, Cecilia Gentili, Juli Grey-Owens, Cristina Herrera, Nathan Levitt, Kierra St. James, Levi Solimine, Gabby Santos, and Rev. Moonhawk River Stone.
We first met in Albany in November, 2015. Though AI staff provided ongoing support, the Advisory Group crafted the recommendations on our own to help ensure that the final product was reflective of community needs. We met for six months and developed a comprehensive set of recommendations that will soon be made public and reviewed for potential implementation.
Some of the health needs of trans people are well documented, as is the fact that they are more likely to experience certain health concerns than are heterosexual and gender-conforming people. The U.S. Department of Health & Human Services' Healthy People 2020 includes a chapter on LGBT Health, noting that TGNC people are more likely to face "a high prevalence of HIV/STDs, victimization, mental health issues, and suicide and are less likely to have health insurance than heterosexual or LGB individuals." Transgender people also experience significant substance abuse problems, while trans youth experience homelessness and self-harm at higher rates than non-trans youth. TGNC people of color are even more affected by these concerns.
Of all of these, HIV has attracted the most attention, for good reason. Transgender women of color are the highest HIV risk group in New York City, and in the world. A recent analysis of worldwide data found that transgender women are nearly 50 times more likely to have HIV than other adults. The New York Transgender Project also found a 50% HIV infection rate among transgender Latina women, and a 48% infection rate among Black transgender women in the study.
As a result, focusing on HIV has become a seductive way to address the health of TGNC people. Simple solutions are attractive, and HIV treatment and PrEP appear, at first glance, to offer that solution. Despite that, a 2015 study of PrEP in 339 transgender women found that it did not reduce their risk of HIV infection. The authors wrote:
PrEP seems to be effective in preventing HIV acquisition in transgender women when taken, but there seem to be barriers to adherence, particularly among those at the most risk. Population effectiveness hinges on the development of widespread PrEP education programs, and structural and legislative reforms to eliminate barriers to health care and HIV prevention services. Provider, policy, and public health interventions that reduce housing instability, improve employment opportunities, mitigate distrust of the medical community, and establish and enforce universal non-discrimination laws that include gender identity and expression are needed.
Transgender people have long understood the importance of looking beyond HIV. When asked about their main concerns, many TGNC New Yorkers often do not even mention HIV. Instead they focus on employment, access to quality health care, homelessness, immigration issues, criminalization, and incarceration. They also speak of being desperately poor and are almost twice as likely as non-trans people in to have very low incomes.
Looking at the Larger Picture
This complex matrix of psychological, legal, social, and physical hardships disproportionately affect TGNC New Yorkers. Marcela Romero, Coordinator of REDLACTRANS, a Latin American and Caribbean transgender network, noted, "I am not a 'high-risk' person. I am a member of a community that is put at high risk." Clearly, the larger forces that put us at risk for HIV must be addressed in order to end the epidemic in the TGNC community.
Healthy People 2020 identified five social determinants of health: economic stability, education, community context, health care, and neighborhood environment. The CDC notes that "health disparities in HIV, viral hepatitis, STDs, and TB are inextricably linked to a complex blend of social determinants that influence which populations are most severely affected by these diseases."
This might be visualized as a TGNC Wellness Cascade. Many transgender people experience social and developmental disruptions and have difficulties with educational attainment, economic productivity, and, eventually, mental and physical health. It is critical to note that few, if any, public resources are currently devoted to the two middle tiers of this cascade (education and economic). In addition, the persistently high HIV infection rate among trans women of color powerfully shows the ineffectiveness of most prevention and treatment approaches.
In this way, the social determinants of health are both indicators of and the driving forces behind the many problems TGNC people face as they seek to live healthy and successful lives. While these determinants have generally been overlooked in HIV prevention, they should be considered primary factors when developing interventions that address the HIV, health, and social needs of transgender people.
Addressing the social determinants of health also offers an opportunity to address the individual and community health needs of TGNC people. Importantly, the majority of resources required to address the complex needs of TGNC people in New York State already exist, but are often inaccessible to those who need them most for a variety of reasons, including provider prejudice and insensitivity, lack of knowledge of TGNC-specific issues, difficulty in obtaining identity documents, fear of disclosing a transgender identity or history, racism, and so forth.
The current commitment to a medical prevention model devours nearly all the resources dedicated to transgender health and wellbeing. More importantly, it is at its core primarily committed to making trans people less infectious or infectable. This is not high on the list that our community has prioritized. Recognizing this, the TGNC Advisory Group focused on the larger forces that put transgender people at risk of HIV.
Over a six-month period, the group produced a set of recommendations to guide the AIDS Institute in planning and implementing the Blueprint for Ending the Epidemic in TGNC communities. They are meant for transgender women and men, as well as transgender youth and elders, and gender non-conforming people of all ages. They also address regional concerns.
- Employment: TGNC individuals need access to employment that provides opportunities for advancement, competitive wages and benefits, and environments free of discrimination and harassment.
- Education: TGNC individuals need educational opportunities that provide gender-affirming environments and relevant curricula (such as trans-inclusive sexual health and TGNC history). This includes, but is not limited to, K-12 schools, colleges, certificate programs, and job training programs.
- Health care: TGNC individuals need access to physical, sexual, mental, and behavioral health care that is regionally accessible, affordable, and delivered by staff that are both skilled in trans-specific care and able to provide services in a trans-affirming manner.
- Law enforcement: TGNC individuals interacting with law enforcement, the Department of Corrections and Community Supervision, and the Department of Justice need to be treated respectfully by professionals knowledgeable about TGNC people. They need to be free from bias profiling, and to have access to safe and gender-affirming housing and services in jails, prisons, and detention centers of all kinds, including immigrant detention centers.
- Housing: TGNC individuals need access to safe and gender-affirming housing that is not exclusively dependent on HIV status. This includes, but is not limited to, transitional living, long-term housing, and various sheltering services.
- Community-based organizations: TGNC individuals need access to Community-Based Organizations (including AIDS Service Organizations and LGBTQ nonprofits) that provide services and programs relevant to TGNC communities, designed and delivered under the leadership of TGNC people, and located in safe environments where all staff, board, and volunteers understand the needs and identities of TGNC communities.
- Immigration: TGNC individuals of immigrants experience need access to all of the aforementioned priority areas in their first languages, as well as the ability to seek asylum from anti-transgender persecution.
- NYS Department of Health: The DOH must reflect the needs of TGNC communities and its commitment to TGNC health in its data collection, hiring practices, training of staff, grant oversight, and funding priorities.
It is important to note that few, if any, of the above recommendations can be accomplished solely by the NYS DOH. Addressing the persistently high rates of HIV among TGNC people requires collaborative solutions that engage a wide range of stakeholders, including many State agencies: Labor, Education, Corrections, etc., as well as local governments, private enterprise, community-based organizations, and the transgender community itself. New York offers numerous strengths that can and must be leveraged to improve the health and well-being of its TGNC residents, including a robust educational, economic and health safety net, as well as notable private sector protections and role model opportunities, a strong, progressive public environment, and a diverse and visible TGNC community with an expanding network of culturally relevant providers.
A Vision for the Future
An authentic vision for TGNC people can't be based merely on reducing risk of HIV infection. Instead, it must acknowledge the importance of creating opportunities for trans people that include meaningful connections and safe, healthy, stable places to live, learn, and work. Despite the sincere and long-held beliefs of the many public and private institutions that fund our work, focusing exclusively on reducing HIV, violence, or stigma has not moved trans people significantly closer to this vision.
A lot has happened in the nearly 20 years since I began working in the field of HIV and LGBT health. That period has seen many changes in the way transgender people perceive themselves and the way others perceive them, in the U.S. and even globally. While there have been many successes, TGNC people still struggle in ways we had hoped would have become part of our collective history by now. Something has to change if trans New Yorkers are to take their rightful place as whole, healthy, successful, and self-sufficient leaders in the next generation of the LGBT community. We can start by retooling our work with trans people toward the outcomes that trans people themselves prioritize, rather than those decided for them.
Addressing these concerns for transgender people is sustainable and cost-effective, and will reduce negative health consequences such as HIV and other STDs, suicide, and homelessness, as well as their significant costs.
If TGNC people, in particular transgender people of color, are identified and engaged in a network of trans-led support services that directly improve their economic, educational, social, and health status, and related concerns, they will be healthier and more likely to make a successful transition to self-sufficiency. They will also become change agents and contributors to a healthy, thriving community. That is the vision that TNGC people see for themselves.
Carrie Davis is a health and human services leader and the former chief programs and policy officer at The Center.