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.
Assessing Responses to the US Monkeypox Outbreak
On August 4th, the Biden Administration declared a Public Health Emergency (PHE) regarding the ongoing Monkeypox outbreak in the United States and other countries where the virus is not endemic. Two days prior, the White House announced a National response Team, lead by the Federal Emergency Management Agency’s (FEMA) Robert Fenton and the U.S. Centers for Disease Control and Prevention (CDC) Dr. Demetre Daskalakis.
Bob Fenton holds some notoriety at FEMA, in part, because in 2005, while helping to coordinate on-the-ground responses to Hurricane Katrina’s devastation, he warned officials in Washington, D.C. that more needed to be done to meet the needs of the moment. Dr. Demetre Daskalakis has been credited with helping to curb and end a measles outbreak in 2018 and 2019 in New York City, prior to joining the CDC, but more aptly, his extraordinary efforts in 2014 to end the meningitis outbreak by bringing vaccines to bath houses, dressing in drag, and otherwise successfully bringing care to communities and people who needed it. With these histories, there’s no wondering why the White House selected these two professionals to lead this response. And having well-qualified leaders with excellent analytical skills and histories of putting success strategies into action aren’t necessarily going to be enough.
In a protracted opinion published to The New York Times, a former U.S. Food and Drug Administration (FDA) lead, Scott Gottlieb, accurately assessed a lack of political appetite to allocate more power and funding into public health. Specifically, Gottlieb argued the CDC has failed to compel a more coordinated response from state level partners, despite a very evident need to make these kinds of investments to shore up the country’s preparedness and ability to respond to health threats. The Biden Administration has instead suggested a need to make more agencies, which may be a way of trying to get around that lack of appetite and still achieve some measure of these investments. This type of move is, as Gottlieb described, a “very Washington response”, from both the short-sightedness of the legislator-politicians tasked with serving the best interests of the country’s populous and the Biden Administration’s fumbling response. He is correct in saying monkeypox, like other viruses foreign to the United States, may well become yet another public health failure. However, Gottlieb also argued the delayed or at least slow federal response to this monkeypox outbreak showed a need for the CDC to get out of the business of preventing illnesses other than infectious diseases and leave that work to other agencies. A gentle reminder, “Prevention” is in the name of the agency and adding layers of bureaucracy will not fix the fact that existing bureaucracy just…isn’t working as fast or efficiently as we need it to in order to respond to public health emergencies.
Those politically powerful voices, like Mr. Gottlieb’s, with influence must push the conversation with their audiences, especially political leadership, to draw a line in the sand in the interests of the nation. The more any party leadership is willing or even happy to promote inflammatory, conspiracy minded, and objectively false claims, especially those around issues of public health, just to win elections, the less power our federal government will have to respond to emergencies and the less states will be willing to cooperate when cooperation is needed.
Of the notable assessments Gottlieb offers, the most meaningful are drawing a potential definition of “public health failure” as monkeypox becoming an endemic virus to the United States in which persistent but low-level of the virus continues to circulate. Another is the potential of an “ascertainment” bias, but not the one most folks discussing this issue might jump to first – regarding communication around at-risk populations – but that this outbreak may seem like it “appeared out of nowhere”. Instead, it has likely been circulating undetected for some time and misdiagnosed or assumed as some other illness among health care professionals. Given the genomic distinctions discovered shortly after the initial detection of cases in Europe and North America, there’s good evidence to support that conclusion; a conclusion that lends great concern for that definition of “public health failure” to be accurate.
On the more technical analyses regarding this outbreak, a lack of precise, effective communication and a willingness for the public to accept complex realities has plagued federal, state, and local health agencies. Arguments between well-intentioned advocates, journalists, and public health professionals on effective messaging have enveloped the discussion around Monkeypox, flooding and fueling social media speculation and concerns of misinformation. Indeed, maliciously intended politicians, like Representative (GA-R) Marjorie Taylor Greene’s repeated statements (which will not be linked here as readers can Google search these things) equating the rare Monkeypox cases being reported among children are some evidence of sexual assault being perpetuated by men who have sex with men, were among the fears voiced on these platforms in June.
Public health agencies are looking to perform a balancing act in ensuring the resources, including vaccines and treatments, are reaching the most highly affected communities, while also educating and informing the public at large when addressing a unique outbreak where clinical information on transmission risks is limited, even as data is becoming more readily available. To be clear, the current global outbreak of monkeypox is concentrated among the social-sexual networks of men who have sex with men (including transgender men). Messaging and resource allocation are two very different things and should not be treated as one in the same. And educational messaging must be carefully tailored to its intended audience in order to not perpetuate stigma and the violence that can result from stigma. Indeed, issues of stigma, violence, and even public policy already suppressed investigation around a previous monkeypox outbreak in Nigeria, which may have better prepared the world for preventing this one. As Dr. MK Titanji pointed out, part of this previous disinvestment and lack of investigation is a direct result of the fact that half of the world’s countries criminalizing homosexuality are within the African continent, some of which are the only countries in the world where monkeypox is already endemic.
Critically important, stigma and other factors which perpetuate health disparities are already finding familiar lines in the United States. The CDC’s Morbidity and Mortality Report Weekly (MMWR), published on August 5th, found that even in the limited data available, "The percentage of cases among Black persons increased from 12% (29 of 248) during May 17–July 2 to 31%." Additionally, for those cases with full profiles, 41% of cases were among MSM living with HIV. The confounding factor to consider with that high rate of HIV prevalence among monkeypox cases is thanks to robust, though certainly not perfect, public health infrastructure specifically in response to HIV, people living with HIV/AIDS (PLWHA) may be more able to readily access health care professionals who are aware and educated about this monkeypox outbreak than other populations. The press conference immediately following the declaration of public health emergency had federal officials discussing a “vaccine sparing” strategy in order to facilitate reaching more people in need. However, given this concentration of case identification among PLWHA and that the available vaccines may not be as effective for this population, there’s good reason for patients and advocates to be concerned what dose sparring may mean for the most impacted population.
As this situation develops, we’re lucky to have the expertise the White House has engaged, who have readily sought out community feedback and engagement. As an example, Harold Philips, the Director of the Office of National AIDS Policy (ONAP), has had subsequent conversations with stakeholders in HIV to discuss leveraging the HIV infrastructure in order to help address this outbreak. And there’s much left unknown, including what exactly the risk is to children who may be in close, consistent, physical contact with people who have been diagnosed with monkeypox. Advocates are already coming together from across jurisdictions in an effort to appropriately influence public policy and program designs. Our efficacy in that work and in coordinating a response based in best practices of meaningful engagement means our private industry stakeholders must also support us in this work.
Additional reading which may be beneficial: From our friends over at the Center for Disaster Philanthropy; Monkeypox Briefing, including suggestions to funders in supporting advocacy and services to address the outbreak.
Addressing the Intersection of HIV and Methamphetamine Use
A recent convening, hosted by the O’Neill Institute, found government representatives, service providers, and community advocates discussing methamphetamine use among gay/bisexual men, transgender women, and transgender men under the lens of exploring stigma, sexual health, and HIV. The intersectionality between HIV and Methamphetamine, commonly known as “meth”, is significantly associated with greater risk for HIV transmission and numerous co-morbidities for people living with HIV.
Attendees received updates on existing data and policy relevant to methamphetamine use. Often overshadowed by the opioid epidemic, wherein the “gaps” in epidemiological data explicitly on meth use were glaringly obvious and largely dependent on supplemental data gathered during HIV outreach activities or related to broader assessments of substance use. Similarly obvious were the reasons why these data would be challenging to gather: law enforcement. According to the Substance Abuse and Mental Health Data Archive (SAMHDA), in 2019, more than 400,000 people who use methamphetamine were arrested and booked into jail for at least one time during the previous twelve (12) months. While the convening focused on gay, bisexual, and other men who have sex with men (MSM), transgender women, and transgender men, federal data found similar rates of methamphetamine use among heterosexual men and MSM. Additionally, there was no statistical difference in methamphetamine use between heterosexual women and lesbian-identified women. There was however an increase in self-reported methamphetamine use among bisexual women. Data provided did not distinguish between cisgender and transgender people, an issue explained as participants in data gathering were not asked necessarily asked questions regarding their sexual or gender identity, rather this information was largely assumed unless a participant disclosed otherwise.
Following the data sharing, patient advocates and service providers discussed their perspectives on what to consider in assessing policy and federally funded programs. Presenters highlighted their own lived-experiences as influencing their ideas on where policies and programs have succeeded and failed – largely coming to an unspoken consensus that we must do at least something differently than we are today. One presenter stated existing funding structures tend to reward large entities which is perceived to be at the expense of small service entities, which may or may not be trusted by people who use substances. Another focused on the contrary policy priorities being voiced by the Biden Administration between supporting harm reduction and supporting law enforcement – giving an explicit voice from community advocates that law enforcement often poses a threat of harm to drug users. Presenters also pointed out the need to distinguish between recreational use, misuse, and addiction, as the stigma associated with substance use often conflates these experiences with one another, when the reality is very, very different. For my part, I shared the idea that existing funding designs associated with HIV, where substance use harm reduction is largely aligned both on issues advocacy and service provision, may perpetuate social stigma by prioritizing the experiences and work of health care providers over that of patients – especially with regard to metrics of “success”. A reworking of funding and program designs and incentives that look at addressing health disparities from a human rights lens is necessary. Envisioning Ryan White programs as workforce development and community investment programs in addition to being public health programs, recognizing the potential detriment of a consolidating provider market and the need to incentivize provider diversification, and shifting funding and goals to better reflect efforts to meet the needs of communities as those communities define them.
Lastly, presenters shared honest assessments of “on the ground” perspectives and what programs are working. With meaningful geographic and demographic diversity represented on the final panel, confirming sentiments of the previous one, presenters discussed novel (and often underfunded) approaches to ensuring affected communities are receiving high quality sexual health education, linkage to care, and low-barrier interventions for those people are seeking them. Panelists discussed the need for policy makers and funding to reinforce those novel programs which do work and to consider novel metrics to better capture these successes. From reinvestments in the Ballroom scene as a safe and empowering space of expression to the successful effort from affected Latino communities in Texas to engage with their state health department, educating health care administrators and providers on the necessity of harm reduction, these programs which originate from the priorities of communities, rather than from the dictates of statehouses are already doing more and going farther than traditional programming.
So…why don’t we have more of this?
To learn more about the initiatives of the O’Neill Institute at Georgetown University, click here.
Access Issues Remain: Protecting and Providing PrEP
Last week, I got to tackle the intersections of medication access and the issues of abortion and transgender health care. In doing so, I brought up one of the court cases I’m watching closely (and you should be too) as the next great attack on the Affordable Care Act (ACA). Kelly v. Beccera asks courts to strike down a portion of the ACA that outlines a requirement of services, care, and medications recommended by the United States Preventative Services Task Force (USPSTF) are required to be covered, with no “cost-sharing” to beneficiaries of a health insurance policy (or at no out-of-pocket cost to patients enrolled in a covered plan). Specifically, petitioners in the case object to the requirement because USPSTF gave a “Grade A” recommendation for preexposure prophylaxis for the prevention of HIV infections (PrEP).
The recommendation, originating with the USPSTF recommendation issued in 2019, and culminating in federal guidance offered in 2021, most insurers were put on notice to begin offering coverage for PrEP and support services at no cost to patients. However, according to an analysis by HIV + Hep Policy Institute, more work needs to be done to ensure payers were complying with the requirements of the law. State and federal regulators are tasked with evaluating benefit design, ensuring compliance, and enforcement when compliance fails. However, those regulators are deeply dependent upon patients and providers to initiate complaints about their experiences in payers who refuse to cover PrEP and the associated services necessary to maintain proper program adherence at no cost to patients. Successfully getting a complaint heard is time consuming and often difficult. Some payers have taken to a tactic of blaming providers for improper coding and billing as to why claims and coverage are being denied to patients. And while the law requires coverage of PrEP, it doesn’t stop insurers from implementing utilization management tactics, like prior authorizations (PAs), in which the insurer prefers a lower-cost generic medication over a higher-cost brand name medication. PAs are a deny and delay effort from payers that generally frustrate the process of a patient accessing the medication and care the patient and their provider has already determined to be of best interest to a patient’s health.
Sometimes, PAs can be an abusive. For example, one state’s public payer program required a PA in order for a patient to receive coverage for Cabenuva (Cabenuva is the treatment sister medication to Apretude, ViiV Healthcare and Janssen Pharmaceutical’s long-acting PrEP product). In this situation, the payer required patients to both be virally suppressed and have trouble swallowing their current oral medication – a complete contradiction to the medical science of HIV treatment. In terms of preventative medications, requiring a patient to fail their current treatment would necessarily mean requiring a patient to risk acquiring HIV unnecessarily – or worse yet to actually acquire HIV, negating the value of PrEP in the first place. Despite all of the value advancing pharmaceutical products and medication modalities may offer us, payers prioritizing costs over benefits realized by patients threatens to undermine the modern gains in the fight against HIV.
This point moves from acute to near painful when considering one pillar of the Ending the HIV Epidemic effort is prevention, the Department of Health and Human Service’s Ready, Set, PrEP program, and President Biden’s push to invest nearly $10 billion into PrEP and other HIV-related programing. But between payers limiting provider networks, provider bias leaving PrEP prescription largely to specialists rather than general practitioners, and the patient costs of navigating a complex payer effort to deny coverage at every turn, our highest ideals of accessible care come to a screeching halt.
Federal and state regulators must go beyond “calling” on payers to cover PrEP and the associated provider and lab services at no cost-sharing. They must refuse to certify payers without comprehensive PrEP coverage policies and practices as managed care organizations (MCOs) for Medicaid, marketplace plans, and qualified employer sponsored plans. If the practices of a payer substantially challenges a patient or provider from accessing PrEP, they are necessarily behaving in a discriminatory fashion. Regulators could require more proactive action on the part of payers to assume eligibility for particular PrEP medications, they could also require payers to “lock-in” medications and services meeting the USPSTF recommendation requirement without ability for mid-year adjustment, particularly with regard to formulary design, they could require payers receiving federal subsidy engage in patient satisfaction surveys as a meaningful engagement of patients and reflection of patient-realized access, they could simply make the penalties for failing to adhere to the law so painful as to not engage in these tactics. Much could be done to curb payer avoidance of covering necessary preventative care and we, as advocates, should readily challenge why these changes haven’t yet been made. And we’ll still have to tackle issues of access for our uninsured peers, often living at the intersections of greatest risk, we’ll still have more work to do to overcome provider bias and social stigma.
Making sure our regulatory structures meaningfully empower and enforce our legal protections as patients is an excellent first step in that process.