Integrating HIV Treatment with Gender-Affirming Care
In our pursuit of health equity, it's critical to focus on the specific needs of transgender people living with HIV, particularly regarding the safe and effective use of antiretroviral therapy (ART) alongside gender-affirming hormone therapy (GAHT). A groundbreaking study conducted by Thomas Jefferson University and the National Institutes of Health (NIH) has significantly advanced our understanding of ART with GAHT for transgender people, specifically women, living with HIV. This research, a direct response to the previously identified gaps in knowledge, offers concrete evidence on the safety of such co-administration, marking a shift in how healthcare providers can approach treatment plans for their transgender patients.
Until now, the apprehension to combine ART and GAHT has led a significant portion of the community to modify their treatment regimens due to fears of adverse interactions. A 2017 study in LGBT Health reveals the depth of this issue, noting that among study participants 40% reported not taking ART (12%), GAHT (12%), or both (16%) as directed due to drug-drug interaction (DDI) concerns. The recent study, published in Clinical and Translational Science, directly addresses these concerns by analyzing the pharmacokinetic interactions of doravirine, tenofovir (key components of ART), and estradiol (a common estrogen used in GAHT). The findings reveal that these medications, when used together, do not significantly impact each other's effectiveness, providing a much-needed evidence base to support the concurrent use of ART and GAHT.
For transgender women living with HIV, the integration of ART and GAHT is essential not only for managing their HIV status but also for affirming their gender identity. This aspect of their healthcare journey underscores the need for clear, evidence-based guidelines that address the co-administration of these treatments without compromising their efficacy or safety. The recent study's findings mark a significant advancement in our understanding, challenging previous assumptions about potential DDIs.
Safety of Co-administration
The study, "Bidirectional pharmacokinetics of doravirine, tenofovir, and feminizing hormones in transgender women (IDentify): A randomized crossover trial," examines the pharmacokinetic parameters—essentially, how the body absorbs, distributes, metabolizes, and excretes a drug—of doravirine and tenofovir (two key antiretroviral medications) when administered alongside estradiol, a common estrogen used in GAHT.
The findings are significant: the co-administration of these ART medications with estradiol does not significantly alter the effectiveness of each drug. Specifically, the study observed that the levels of doravirine, tenofovir, and estradiol remained stable when used together, indicating that these medications can be safely combined without diminishing their ability to treat HIV or support gender transition.
This research addresses a critical gap in healthcare for transgender women living with HIV, who have historically faced uncertainty about combining ART with GAHT. By demonstrating that these medications do not interfere with one another to a clinically significant degree, the study reassures patients and healthcare providers alike that pursuing both HIV treatment and gender affirmation simultaneously is both safe and viable.
Furthermore, this study lays the groundwork for more informed healthcare practices. It underscores the importance of considering the unique needs of transgender people in HIV treatment plans and encourages ongoing research to explore the interactions between various ART and GAHT regimens. Ultimately, this evidence supports the development of comprehensive care models that fully address the health and well-being of transgender women living with HIV, ensuring they receive effective, affirming care without compromise.
Advancing Guidelines and Communication for Integrated Care
For providers, this new data addresses the concerns expressed in a prior literature review in the Journal of the International AIDS Society, which noted the "insufficient data to address DDIs between ART and feminizing hormone regimens." Now, with fresh insights available, the emphasis can shift to using this updated information to craft and apply comprehensive guidelines and to kickstart education campaigns for providers and the community that align with these new findings.
The urgency now is to convert this research into practical, accessible guidelines that assist healthcare providers and transgender women in navigating the safe use of ART alongside GAHT. It's critical to update healthcare providers with the latest evidence, ensuring they are well-equipped to guide their patients through informed treatment choices. This means integrating new research findings into professional development programs and encouraging open, knowledgeable conversations between healthcare professionals and their patients about the combined use of these treatments.
Expanding the Scope: Inclusive Research for Transgender Men and Non-Binary People
While significant strides have been made in understanding the co-administration of antiretroviral therapy (ART) and gender-affirming hormone therapy (GAHT) for transgender women, our knowledge remains limited when it comes to transgender men and non-binary people living with HIV and seeking gender affirming care. With the completion of this major study by Thomas Jefferson University and the NIH, the next step is to expand our research efforts to encompass the full spectrum of transgender experiences, ensuring that future studies are as inclusive and comprehensive as possible.
Transgender men and non-binary people face unique healthcare challenges that are often overlooked in medical research. This oversight not only perpetuates health disparities but also leaves significant gaps in our understanding of how ART interacts with testosterone and other aspects of gender-affirming care utilized by transgender men and non-binary people. To ensure that all members of the transgender community receive comprehensive and affirming care, it is imperative that future studies specifically investigate these interactions.
The call for research extends beyond the pharmacokinetic interactions to encompass the physiological, psychological, and social outcomes of combining HIV treatment with gender-affirming care across all gender identities. Such studies should aim to provide a holistic understanding of treatment efficacy, safety, and the overall well-being of gender diverse patients, regardless of their specific gender identity or the nature of their gender-affirming treatments.
By advocating for and conducting research that includes transgender men and non-binary people, we can move towards a healthcare model that truly embraces diversity and inclusivity. This approach not only enriches our collective knowledge but also ensures that healthcare practices and guidelines are reflective of the needs of the entire transgender community. It is through this comprehensive understanding that we can improve care, enhance treatment adherence, and ultimately support the health and well-being of all transgender people living with HIV.
Mobilizing for Inclusive Healthcare Reform
The recent advancements in understanding the co-administration of antiretroviral therapy (ART) and gender-affirming hormone therapy (GAHT) represent a significant step forward. However, the journey towards fully supporting the health and well-being of all transgender people living with HIV continues. We must intensify our efforts in advocacy, education, and policy reform to ensure equitable treatment for everyone. Here's how different stakeholders can contribute:
For Healthcare Providers:
Educate Yourself: Actively seek out and participate in continuing medical education (CME) opportunities focused on the latest research in ART and GAHT co-administration. Utilize resources from reputable organizations such as the World Professional Association for Transgender Health (WPATH) and the Centers for Disease Control and Prevention (CDC).
Practice Inclusive Care: Implement guidelines and practices in your clinical setting that respect and address the unique needs of transgender patients. Ensure that your staff is trained in cultural competency regarding transgender health issues.
For Researchers:
Fill the Research Gaps: Prioritize studies that explore the long-term health implications of ART and GAHT co-administration, especially for underrepresented groups within the transgender community, such as transgender men and non-binary people.
Collaborate with the Community: Engage with transgender communities to ensure that research is inclusive, relevant, and respectful. Consider community-based participatory research (CBPR) approaches to involve community members in the research process.
For Policymakers:
Develop Evidence-Based Guidelines: Work with medical experts and advocates to create and enforce guidelines that facilitate the safe co-administration of HIV medications and gender-affirming therapies. These guidelines should be based on the latest research and best practices.
Support Access to Care: Advocate for policies that remove barriers to accessing both HIV treatment and gender-affirming care. This includes ensuring coverage by insurance providers and addressing legal and systemic obstacles that transgender people face.
For Advocates and Community Leaders:
Raise Awareness: Use your platforms to disseminate accurate information about the safety and importance of integrating ART with GAHT. Highlight stories and data that underscore the positive impact of affirming care.
Mobilize Support: Organize campaigns to advocate for improved healthcare policies, increased research funding, and greater awareness of transgender health needs. Collaborate with healthcare providers, researchers, and policymakers to amplify your efforts.
Together, we can bridge the gaps in care and knowledge, creating a future where every transgender person living with HIV has access to the treatments they need, free from stigma and barriers. Let's commit to a healthcare environment that celebrates diversity, champions inclusivity, and ensures comprehensive care for all.
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.
2020 HIV Surveillance Proves Earlier COVID-19 Concerns
On May 24th, the U.S. Centers for Disease Control and Prevention (CDC) issued its much anticipated annual HIV surveillance report. The anticipation is akin to waiting for a bill in the mail, “how bad is it gonna be?” In the same vein as this sentiment is the understanding that we, as a country, made the policy decisions to underinvest in public health programs, the political calculus in response to a public health emergency, and the diversion of already too scarce personnel and infrastructure resources in HIV in the effort to address COVID-19. We’re reminded of this shifting of costs, “robbing Peter to pay Paul”, throughout the annual report, in every infographic, and in the press releases associated with the report’s announcement: “Data for 2020 should be interpreted with caution due to the impact of the COVID-19 pandemic.”
Source: CDC. Diagnoses of HIV infection in the United States and dependent areas, 2020. HIV Surveillance Report 2021;33; retrieved online at: https://www.cdc.gov/hiv/library/reports/hiv-surveillance/vol-33/index.html
The top line of the report is a marked decrease in new HIV diagnoses; where since 2016, we’ve typically seem about a 3% annual decrease in new diagnoses, 2020 gave us a 17% decrease. The aforementioned press release states the decline in new diagnoses should be “attributed to declines in testing caused by less frequent visits to health centers, reduced outreach services, and shifting of public health staff to COVID-19 response activities.” The press release went further, remarking that because COVID-19 is “still ongoing, more time and data are needed to accurately assess COVID-19’s impact on HIV” and urged those relying on these data to not provide assessment s on trends in HIV diagnoses to include 2020 data are a result. A noted difference from traditional reports, this year’s supplemental Estimated HIV Incidence and Prevalence in the U.S. will not be published.
Another finding in the report is the rate of death for people with an HIV diagnosis. While the report appropriately notes the data is “all cause” deaths among people living with HIV and those deaths should not necessarily be attributed to an HIV-related complication, the incidence of death among people living with HIV did increase in 2020 significantly. This particular data category is one the CDC notes should not be “assessed” as misinterpretation is distinctly possible, if not likely. With more than one million dead from COVID-19 in the United States, HIV will not be an outlier in seeing increased all cause mortality. However, this data should be closely watched given our aging patient population and the high correlation between COVID-19 mortality risks and age.
The report encourages viewers to access the CDC’s data tool, Atlas Plus, to review “Stage 3” (AIDS) classification and prevalence. The data table for this shows a similar marked decrease in providers classifying patients living with HIV with advanced conditions and AIDS-defining diagnoses, compared to similar years. However, that decrease should be viewed extreme caution as data on linkage to and retention in care is not yet available. As NBC’s, Benjamin Ryan reported, some providers who saw patients drop out of care during the height of COVID-19-related restrictions and are now seeing patients return to care “devastatingly ill with multiple AIDS-defining diagnoses”.
A final note on the data provided, Black gay and bisexual and other men who have sex with men, Black women, and Black transgender people remain a patient demographic hard hit by new HIV diagnoses. The South accounts for nearly half of all new diagnoses. These things are not coincidental. While expanding Medicaid in southern states would provide additional opportunities for communities to find health care coverage, a lack of Medicaid expansion does not explain these geographic and demographic disparities. It is important to always recall the vast majority of the Black people living in the United States also happen to live in southern states – ultimately, racism, while hard to “measure” in a public health context, cannot be dismissed or overcome by the limited imagination of expanding Medicaid. Medicaid expansion would well-serve southern states and provide an excellent tool but should not be considered the only tool or surest answer to the social ills inflicting harm on southern Black communities.
Supplemental reports are published throughout the year, helping to further define the contours of the domestic epidemic. We’ll be monitoring and evaluating the data from these as they’re published and encourage stakeholders to review these data, weighing how best to support public health programs aimed at addressing HIV and the health and social disparities that drive the epidemic. As always, pertinent data monitoring public health programs serving at the intersection of HIV and Hepatitis C can be found in Community Access National Network’s quarterly HIV-HCV Coinfection Watch.
In multiple previous blogs throughout 2021 and during both the 2021 and 2022 Community Roundtable events, I’ve stressed the issue of “flying blind” as a result of losing hard earned ground with regard to regular testing, linkage to care, and engagement in care. The 2020 surveillance unfortunately proves this point and, as the CDC has noted, the COVID-19 pandemic is still ongoing. I’d go further and state the disruptions caused by the COVID-19 pandemic are also still ongoing. While many public health programs are working to recover personnel shifts, some state legislatures are cutting funding for health departments. Yes, activities associated with HIV programs are generally federally funded and administrative supports necessary to hire and train sufficient personnel are tied to broader public health programming and if these jobs aren’t filled, then the jobs associated with HIV programming may well go unfilled as well. Stakeholders will need to keep an eye on the evolution of data as we begin to uncover just how much COVID-19 has cost us in HIV progress.