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.

Beyond Medication: Tech Advances in Care Delivery

Broad telehealth acceptance is just the tip of the iceberg when it comes to technology advancements and innovations in the general health care space. From mobile Apps designed to encourage patient-provider communication and medication reminders to drone being the next home delivery pharmacy tool, much hope and concern rests on the horizon of health-in-your-hand-and-on-demand.

In this, as with many developments in care delivery and equitable access, the space of chronic care, specifically HIV, has long helped lead the way for the rest of the industry. A 2018 post on HIV.gov and 2020 post on webMD cite several mobile Apps with focuses on prevention services, linkage to care, care support, and social support. Some study has been done about effective strategies of user engagement with mobile Apps, with a particular focus on younger demographics. One such study, from University of North Carolina at Chapel Hill and Duke University, with participants ranging from 16-24 years of age, found extraordinary efficacy with a “gamifying” approach, including “badges” and “tokens” among users as rewards for adherence and completing tasks or engaging with the App. At 13 weeks, frequent users of the App were more than 56% more likely to achieve viral suppression and regular App users were more than twice as likely to self-report near perfect ART adherence at benchmark periods of the study. Another study, offering social support, with participants at or above 60 years of age across a period of 6 months showed the 30 participants accessed the App more than 2400 times for an average nearing 9 minutes per session.

Many of the studies working to understand best practices in client engagement, messaging, and positive outcomes are exceptionally limited. Beyond the cohort size, technology barriers appear to the biggest hurdles; including ensuring clients have appropriate devices for any particular App design, updated software, ensuring App accessibility across hardware platforms (phones, tablets, computers), appropriate data plans, and access to mobile data signal or Wi-Fi services.

Another avenue under exploration includes modernizing the time-tested aid delivery method of airdrops with drones to reach hard-to-reach rural area health care providers. However, as Uganda Medical Association’s secretary general, Mukuzi Muhereza, cited, drones only address medication transportation to health centers, not issues of medication shortages or transportation barriers from client homes to those same health care providers.

When given this topic for this week, my contract manager questioned “if this can be done in Uganda, why can’t it be done in rural Alabama?” Which is a good question…with lots of discussion worthy of following.

The business that cannot be escaped when discussing consumer data and tech also cannot be avoided in discussing health care delivery systems innovation: Amazon. In 2018, Amazon acquired PillPak, including all their state-based pharmacy licensing agreements, now billed toward Prime customers as Amazon Pharmacy. While posing as a potential exploration into the health care landscape, Amazon Pharmacy’s effort builds upon a concurrent effort to make the company’s voice assistants HIPAA compliant. However, much of Amazon’s effort don’t necessarily fall inside the entity scope requiring patient privacy compliance as HIPPA and explicitly cites compliance with law enforcement activities, recalling community fears associated with molecular surveillance and the criminalization of HIV status. Particularly, Amazon has been known to exploit its collection of user data for the sake of profit, skirt regulatory requirements on technicalities and mutilation of language, and frankly, lacks ethical grounds worthy of potentially courting government funding in light of its anti-labor practices.  Additionally, Amazon has faced numerous data breaches in the last few years and European Union former executives for Amazon have warned the company does not do enough to ensure security of users’ information. Garfield Benjamin gives a deeper dive into the history and context of these concerns, many already experienced in the United Kingdom, here.

That doesn’t mean Amazon, or any company making similar inroads into direct-to-consumer care models, is “always” a bad actor. Indeed, with the Federal Aviation Administration’s recent approval to study Amazon’s drone delivery system, known as Amazon Air, the possibility of delivery to your door within the hour of an appointment is deeply appealing to many consumers seeking easier access to medication. It just means the risks of the moment, of unanswered questions and unregulated technicalities needs to be addressed – and with expediency. Because just as with injectable ARVs being the next wave of innovation in ARVs, streamlining the consumer experience with greater privatization and expanded home delivery options is also on the horizon.

We have this brief moment, now. Where the mega-movers, like Amazon, and regulators, can reach outside of the provider and payer communities and discus with patient and consumer communities to ask us what we’re worried about. If public payers are not prepared to integrate appropriate reimbursements, leverage those reimbursements to ensure our privacy and access to care, to further Health Justice, then we run the risk of only furthering existing disparities, even more than COVID has. Between the rural hospital crisis only deepening and the Biden administration already running into push back on including expanding broadband access in its infrastructure package, as easy examples of the necessary “what-abouts” if we’re to meet this moment for its actual potential – for either good or ill.

Stakeholders across the spectrum should look beyond any development of their own proprietary App functions and into the broadest approach to this space to ensure consumer trust is maintained as one of the highest priorities, collaborative rather than competitive efforts so as not to duplicate efforts or get lost in the sea of App developments, and ensure our technology reflects our values as communities, not just that of those who may find new avenues of profit on our backs.