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.