Recognizing the Intersection of Transgender Identity and HIV
As we reflect on the Transgender Day of Remembrance, it's imperative to delve into how societal, medical, and policy factors intertwine in the lives of transgender and gender-diverse people, particularly in the context of HIV.
The Heightened Risk
Transgender and gender-diverse people face a significantly higher risk of acquiring HIV. According to a UNAIDS fact sheet, “in 2019, the risk of acquiring HIV was 13 times higher among transgender and gender-diverse people than among the rest of the adult population.” The prevalence of HIV among transgender women is 19 times higher than for other women aged 15-49 years. This alarming statistic is a glaring indicator of the systemic barriers and health inequities faced by the transgender community. Data more specific to transgender men is still being developed, as the population has not been deeply invested in thus lacking robust research. This uneven interest in trasngender men and HIV is noteworthy as well.
A study published in PMC reveals that these disparities are intricately linked to experiences of discrimination and marginalization, particularly for transgender women of color. The Center for Disease Control and Prevention (CDC)'s Transgender Issue Brief further highlights the complexity of this issue, pointing out that the risk factors for HIV among transgender and gender-diverse people are multifaceted, involving not just behavioral risk but also broader social determinants of health. These include factors like unemployment, housing instability, and limited access to culturally competent healthcare, all of which contribute to the heightened risk of HIV.
Stigma and Discrimination: Barriers to Healthcare
The journey of a transgender person in accessing healthcare, particularly HIV-related services, is fraught with challenges, primarily due to pervasive stigma and discrimination. This is not just a matter of personal prejudices but a systemic issue that significantly impacts health outcomes.
The link between discrimination and increased HIV prevalence among transgender women is well-documented. A study published in PMC highlights how experiences of stigma and discrimination correlate with higher rates of HIV. These findings are a direct consequence of the barriers created by such discrimination. Transgender and gender-diverse people often face hostility or ignorance in healthcare settings, leading to a reluctance to seek out necessary medical care, including HIV testing and treatment.
The UNAIDS fact sheet further elaborates on this issue, noting that the fear of stigma and discrimination goes beyond personal discomfort. It often involves a fear of violence, legal repercussions, or outright denial of care. This fear is not unfounded, as many transgender and gender-diverse people have faced dehumanizing treatment in healthcare environments, where they should be receiving support and compassionate understanding.
Legal and Human Rights Perspective in a Global Context
Legal protections and human rights for transgender and gender-diverse people, particularly in the context of healthcare and HIV, is a global issue that reflects both progress and setbacks. The United States, in this regard, presents a case study of the complex interplay between national policies and international perspectives.
Recent initiatives by the Biden-Harris Administration mark measured efforts toward advancing equality and visibility for transgender Americans. These measures, ranging from supporting transgender youth to combating discriminatory legislation, are crucial in fostering an inclusive society where transgender and gender-diverse people can access necessary healthcare services.
However, the United States' fractured approach to transgender rights and HIV prevention has not been without well-earned criticisms. The United Nations' recent report, highlighted in them.us, expresses deep concerns about the U.S.'s handling of LGBTQ rights. This critique underscores the ongoing challenges in ensuring full rights and protections for transgender people, particularly in areas such as the criminalization of transgender identities and the lack of comprehensive legal protections - particularly as it related to youth and parenting. While much attention has been given to transgender and gender diverse youths’ rights to expression and identity, little has been paid toward protecting the rights of parents or caregivers who are themselves transgender or gender diverse. These issues not only perpetuate stigma but also hinder access to essential health services, including HIV prevention and treatment.
Combating Anti-Trans Violence and Policies
The prevalence of transphobia and anti-trans violence in the U.S. poses a significant public health challenge, particularly affecting the health and well-being of transgender and gender-diverse people, especially those living with HIV. Addressing this requires both immediate action against violence and discrimination and the implementation of inclusive policy initiatives.
The National Alliance of State & Territorial AIDS Directors (NASTAD) report highlights the detrimental impact of violence and discriminatory policies on the health of transgender and gender-diverse people, contributing to increased HIV risks and barriers to effective treatment and care.
In response, the Biden-Harris Administration has initiated several measures aimed at enhancing equality and visibility for transgender Americans, as detailed in their fact sheet. These initiatives, ranging from improving travel experiences to combating legislative attacks on transgender youth, are integral to public health objectives, including the "Ending the HIV Epidemic" campaign.
These efforts are crucial for creating a healthcare environment free from discrimination and violence for transgender and gender-diverse people. Additionally, they align with global calls for inclusive policies that support the rights and health needs of transgender people, as emphasized in various international reports, including those by the UN.
The Role of Mental Health in the Transgender and HIV Context
Mental health is a crucial aspect for transgender and gender-diverse people, particularly those living with HIV. This group often faces unique mental health challenges, including higher rates of depression and anxiety, as highlighted by the Human Rights Campaign. These challenges are often rooted in societal stigma and discrimination related to both transgender identity and HIV status.
Research, including a study from PMC, indicates that transgender women with HIV experience more psychological distress than their cisgender counterparts, often due to stigma, discrimination, and violence. This distress can adversely affect their engagement with HIV treatment and care.
The CDC's Issue Brief emphasizes the importance of mental health services attuned to the experiences of transgender and gender-diverse people. Tailored mental health care is vital for addressing their specific needs, especially in the context of HIV.
Furthermore, mental health issues can influence the effectiveness of HIV treatment. The UNAIDS fact sheet notes that challenges in mental health can impact adherence to HIV medication and healthcare engagement.
Providing comprehensive, culturally competent, and stigma-free mental health care is essential for improving life quality and health outcomes for transgender and gender-diverse people living with HIV. It's about more than treating symptoms; it's about addressing the societal and institutional factors contributing to these mental health challenges.
Personal Narratives: The Human Aspect of the Transgender and HIV Experience
In the midst of discussing data and policies, it's crucial to center the human stories that truly embody the intersection of transgender identity and HIV. These personal narratives bring to life the statistics and policies, offering a deeper understanding of the lived experiences of transgender and gender-diverse people within this community.
One such powerful story is shared by Arianna Lint, a transgender Latina living with HIV, as featured on The Well Project. Her journey sheds light on the multifaceted challenges faced by transgender and gender-diverse people, particularly those living with HIV. She says, "Living as a transgender woman with HIV, I face a daily battle against stigma, not just from society but sometimes from within myself." This statement poignantly captures the internal and external struggles that are part of her reality.
Her narrative further reveals the complexities of navigating healthcare, societal acceptance, and personal identity. She explains, "Every doctor's visit, every social interaction feels like stepping onto a battlefield where I must constantly defend my existence." These words powerfully illustrate the constant vigilance and resilience required in her day-to-day life.
These personal stories are not just anecdotes; they are a vital part of understanding the broader context of transgender health and HIV. They underscore the importance of empathy, understanding, and tailored support. As Arianna notes, "Support from my community and healthcare providers who truly understand my journey has been a lifeline. It's about seeing me as a whole person, not just a diagnosis."
The Path Forward: Recommendations and Actions
To effectively address the challenges at the intersection of transgender identity and HIV, a comprehensive and actionable strategy is essential. Key areas of focus should include:
Enhancing Data Collection: Advocating for and supporting initiatives that gather more comprehensive data on transgender and gender-diverse people and HIV is crucial. This data is vital for informing effective policy and healthcare interventions. Changes at every level, from the CDC’s data operations to the Electronic Medical Records systems used by local providers, must be updated to collect relevant qualitative data points around intersectional identities.
Promoting Inclusive Healthcare: Encouraging healthcare providers to undergo training in inclusive, non-discriminatory care practices is essential. This can be achieved by advocating for policy changes at healthcare institutions and supporting training programs that focus on the needs of transgender and gender-diverse people. Of note: just prior to the time of this writing, a Florida Representative introduced a state bill which might forbid such competency trainings among all state agencies and contractors.
Supporting Mental Health: Amplifying the importance of mental health resources and support for transgender and gender-diverse people living with HIV is critical. This includes advocating for mental health services that are culturally competent and accessible.
Advocating for Legal Protections: Pushing for legal protections in healthcare, employment, housing and more for transgender and gender-diverse people is a key step in reducing stigma and discrimination. These protections should include investment in equitable employer-sponsored health benefits and public health programs. As of yet, the Biden Administration has not finalized a Rule for Sec. 1557 of the Patient Protection and Affordable Care Act, also known as the anit-discrimination provisions of the law.
Community Engagement and Support: Strengthening community support networks and engaging with organizations addressing HIV among transgender and gender-diverse people is vital.
Conclusion
The intersection of transgender identity and HIV is a complex issue that requires a nuanced understanding and a compassionate approach. By combining data-driven analysis with personal narratives and policy insights, we can begin to unravel the complexities of this intersection. It's not just about statistics or policies; it's about the lives of people who are often marginalized, misunderstood, and villainized. As we move forward, it's crucial to keep the focus on humanity, dignity, and the collective effort to create a more inclusive and healthier society for all.
A note from our CEO, Jen Laws: CANN recognizes TDOR as a call to action as much as a day of remembering those we've lost in the fight for a more fair and just world for transgender people. HIV advocacy is uniquely situated to lend our collective voices, institutional influence, and power to those by-for organizations serving transgender people. We ask for deep reflection on this, and every day, as to how we as a community of advocates can be strong allies in a related body of work as opposed to savoirs, all too often usurping one cause for our own.
Jen’s Half Cents: Addressing Health Disparities Through a Human Rights Lens
In early January 2023, I met with colleagues in Washington, D.C. We discussed priorities in the coming year, shared about families and holidays, and enjoyed the beauty of coming together as friends over a meal. But the flight to D.C. from New Orleans gives me about two and a half hours of reflection ahead of these things and something had been nagging at me. Over dinner, I asked if there was a sense our funders in advocacy might be considering how best to approach our mutual interests, particularly in addressing issues of health equity, health disparities, and access to care. Which comes first, human rights or health justice? Which lens necessarily advances the other interest most effectively? And how do we achieve any of that in the socio-political climate we find ourselves today?
A few days later, news broke about Governor Bill Lee discontinuing Tennessee’s involvement in federally funded HIV prevention programming. At the crux of the move were two issues: abortion access and access to gender affirming care. Since then, Tennessee and numerous other states have seen a swath of hundreds of proposed laws aiming to censor libraries and librarians, penalize teachers for sharing about their lives or properly educating students as to facts of anatomy or basic sex education, potentially criminalize parents and providers for providing gender affirming care, penalize public payer administrators for covering gender affirming care, subvert federal regulations on Food and Drug Administration (FDA) approved medications, and a whole host of issues which, in essence, seek to roll back any progress made in terms of human rights in the United States. Many of these pieces of legislation have no chance of survival on legal challenge but the problem is there’s just so much legislation that legal advocacy organizations, like the American Civil Liberties Union (ACLU), are overwhelmed trying to prepare responses. And the Biden Administration, despite much noise made in 2022 about efforts to protect abortion access and the rights of transgender Americans, has been relatively quiet in the first two months of 2023.
Before we move on, I want to take a moment and encourage our readers to support Erin Reed’s work. While our friends over at the ACLU, or Human Rights Campaign, and others are doing absolutely amazing work on educating legislators, advocating and organizing against these bills, and more, Erin has been dedicating a truly superhuman amount of time and energy into ensuring as much of these hearings are being covered in real-time as possible. She is leveraging a massive social media following to activate transgender communities and our allies in response to these bills all while juggling a family of her own.
I also want to take a moment to encourage support of our friends over at Equality Case Files for extraordinary tracking of litigation, including travel to witness and report on trials which otherwise are not accessible due to courts not always having live streaming.
I won’t ever shake reading Reed O’Connor’s preliminary injunction in Franciscan Alliance. The Obama Administration had waited until mid-2016 to propagate a Final Rule for the Affordable Care Act’s nondiscrimination provisions, known as Section 1557. And on the last night of the year, 20 days before the transfer of power and with absolutely no hope of being able to mount an opposition to the ruling, Reed O’Connor prohibited the rule from going into effect.
With meaningful uncertainty as to how the 2024 election cycle will go, the silence from the Biden Administration on finalizing a new Final Rule for Section 1557 is…hard on a heart. To be fair, nearly seventy-four thousand comments were submitted on the proposed rule. And the issues raised by those comments must be answered in a Final Rule. It’s a lot of work.
But that’s the nature of today’s environment, a beaten down and depleted federal workforce cannot follow the rules necessary to issue needed regulations, leaving much of the work to defining the contours of our laws to a recently reshaped judiciary. And in programmatic situations, that lack of government workforce, just means dollars meant to serve community needs aren’t getting to where they need to go and people are likely dying as a result.
So here we are, with a mental health crisis among our youth, the most marginalized and highly-affected by HIV communities being used as ideological scapegoats for cutting HIV prevention programming, and all of our avenues of remedy being overwhelmed with cheap shots at the least powerful demographics in the country.
Our human rights are under attack, and the necessary roll down impact is health disparities will worsen. Health equity will be further and further away. More and more scared young women and queer kids will turn away from the carefully-built safe spaces to seek life-saving care and the most likely outcome is we will see our youth die. Legislators are not deaf to these facts. They simply just don’t believe them. In a “post-fact” society, data is becoming less relevant as “people say” or “studies say” and a tortured misreading of findings is presented as evidence to justify stripping transgender people and women of basic rights to bodily autonomy or raising a family or seeking care.
And in response to Governor Lee’s moves, certain HIV advocates argued we need to keep low, stay quiet, “maybe he’ll change his mind,” as if HIV was ever the actual issue and we owned the corner market on the issues at hand. HIV prevention funding is just the means to the end, the “bat” in bludgeoning transgender people and abortion access.
Quietly, I cautioned, that HIV advocacy doesn’t get to control the narrative when HIV funding and programs are being weaponized to harm marginalized communities. Stripping critical funding from women means women get to drive our response, prohibiting programs from addressing drug users means drug users must guide us in our response, when Black neighborhoods don’t have an access point because all the other service providers in the area are white-managed and no dollars are left, Black voices must be placed front and center and well-supported and protected in designing HIV solutions. We never ever get to solely own the narrative of response, as HIV advocates, and operating in a silo, away from the context of the very identities of people living with HIV only has the effect of disempowering and weakening our response.
We must reckon with the fact that our national programming is not well-situated to deliver quick solutions to the problems of states refusing dollars in an effort to win political points. Our funders must prepare for a world in which the programs we’ve come to rely upon to deliver services are no longer reaching patients. Our partners in advocacy and service need to reconcile with the fact that when it comes to advocacy and service, outside of pharmaceutical manufacturers and the federal government, few other reliable funding pathways exist in the United States.
I don’t know which comes first, human rights or health justice. I do know we don’t get to one goal without the other and we desperately need to have strategic conversations with our partners in human rights work (and our partners in human rights work having conversations with us) about what a cohesive, rather than competitive, funding approach might look like. I do know that Ending the HIV Epidemic is an issue of both human rights and health justice. I do know meaningfully stopping the overdose crisis is an issue of both human rights and health justice. I know that eliminating Hepatitis C is an issue of both human rights and health justice. I know… I know that achieving health justice and equitable human rights is about saving lives every single day, regardless of what initiative we’ve branded those goals with and that we cannot achieve any of those initiatives without achieving an environment of well-protected, equitable human rights and tangible, touch-your-fingers-to-it, access to care for every person.