Prescription Drug Advisory Boards: What They Are and Why They Matter to Patients

It’s no secret that the high cost of healthcare is a significant concern for most Americans. The total national health expenditure in 2021 increased by 2.7% from the previous year to 4.3 trillion dollars which was 18.3% of the gross domestic product. The federal government held the majority of the spending burden at 34%, with individual households a close second at 27%. A cornerstone component of medical treatment is the access to prescription drugs. In 2019 in the U.S., the government and private insurers spent twice as much on prescription drugs as in other comparatively wealthy countries. Despite catchy phrases that poll well, and “simple” solutions by politicians that promise to fix the problem—such as Prescription Drug Advisory Boards (also known as Drug Pricing Advisory Boards)—it is mindful to remember one thing: if it sounds good to be true, then it probably isn’t true.

CANN PDAB infographic: What are they and why do they matter? (https://tiicann.org/dpab-project.html)

While list prices of prescription drugs continue to increase, medication costs do not represent the largest share of healthcare costs or the largest growth in healthcare costs in the United States. The cost burden on patients is so untenable for many that some have to decide between paying for medications, food, or mortgages. However, due to a number of incentives and the role of loosely regulated pharmacy benefit managers (PBMs), there is little direct relationship between drug list prices and patient cost burdens. This fact is only just now being appreciated by lawmakers but is not currently reflected in our healthcare funding schemes. As such, the discourse surrounding lowering cost is a consistently turbulent sea navigated by diverse public and private parties, with the language around drug pricing assuming efforts to curb costs relate to patient costs and access – but not explicitly saying so (and for good reason). Some proposals are government related, such as federal drug pricing proposals. Recent developments are state-level focused closer to home. One such development is the Prescription Drug Advisory Boards, or PDABs.  

PDABs are part of state divisions of insurance. Drug pricing efforts, in the general sense, could be a good thing. PDABs are being marketed to the public as a better means to make drugs more affordable for patients. However, the details of the implementation of developing PDABs are wherein lies significant challenges. Overall, the boards focus specifically on the prices of the drugs. However, the focus on pricing is mainly related to what governments, insurance companies, hospitals, and pharmacies are paying for the medications. This purview and the monitored metrics associated with PDABs do not necessarily translate into the actual costs patients pay at the pharmacy counter.

Because these designs are singularly focused on the “cost” to payors, current proposals and initiatives benefit both public and private payors at the expense of the patient access and the provider-patient relationship. It is unacceptable for any planned PDAB activity to disrupt the patient-provider relationship. Community Access National Network (CANN) has consistently opposed any policy initiative that might increase administrative barriers and patient burdens. Two examples are step-therapy and prior authorization. Activities such as these are considered what is known as utilization management. Utilization management helps lower prescription drug spending for public and private payors but creates additional costs for patients financially and logistically, affecting their continuity of care, amounting to a cost burden shift, not a meaningful increase of access to affordable, high-quality care and treatment for patients.

Additionally, the narrow specific focus on the list prices of drugs overlooks essential issues. Lowering the list price for medications can, for example, harm organizations that depend on revenues from the 340B Drug Pricing Program. The 340B program allows safety net clinics and organizations to purchase prescription drugs from manufacturers at a discounted price while being reimbursed by insurance carriers at a non-discounted cost. The surplus enables these entities to provide many services that the low-income populations they serve depend on. This is especially vital to low-income people living with HIV that do not have the means to afford all of their healthcare needs.

It is imperative that PDABs receive input directly from patients and caregivers as well. PDABs are aggregating a large amount of data. However, more of that data needs to include considerations of the patient experience. For example, drug rebate reductions can impact care and support services, such as transportation assistance or mental health services at federally qualified health centers (FQHCs). Moreover, there needs to be an examination of the actual pass-through savings to patients. Most importantly, PDABs need to explore how pricing decisions affect patient access. A lower drug list price is not beneficial to patients if it creates or increases administrative burdens or increases costs for patients in other ways outside of paying for the cost of medication.

Most policymakers do not always have robust experience in understanding the nuances of dealing with public health programs, clinics, and populations. This is especially true regarding the marginalized community of people living with or at risk for acquiring HIV, those affected by Hepatitis C, or people who use drugs. PDABS must be held accountable for acquiring anecdotal qualitative and quantitative data regarding patient experience, accessibility, and affordability while developing recommendations related to drug pricing. As it stands, of the states that have implemented a PDAB, none have statutorily mandated metrics monitoring patient experience and access.

Patients, caregivers, and advocates with direct experience and greater understanding of the policy landscape around healthcare access play a vital role in helping to shape legislation and informing proper implementation of programs to meet the goals those programs were “sold” on. If monitored metrics do not consider or reflect patient experiences, then the program is simply not about increasing access for patients.

PDABs, fortunately, do have numerous opportunities for patients, caregivers, advocates, and providers to become involved and to elevate patient priorities over that of other stakeholders. Getting involved and staying involved with a state’s PDAB work is critically necessary to ensure any final work or regulation is patient-focused.

CANN will be present and offering feedback at various PDAB meetings in affected states. The next meeting CANN will be attending is virtual for the state of Colorado, on July 13th at 10am Mountain time. You can register here and participate in ensuring any action taken reflects patient needs.

Opioid Settlements in America

In 2021, a group of state State Attorneys General announced a $26-billion national opioid settlement with three of the largest drug distributors—McKesson Corp., Cardinal Health, Inc., and AmerisourceBergen Corp.—and drugmaker Johnson & Johnson that would see $21b and $5b from those groups, respectively. This settlement deal was approved by all but four states—Alabama, Oklahoma, West Virginia, and Washington—and distribution of those funds began in 2022.

As with every such settlement, funds are distributed to states and municipalities, but how those funds are used is largely up to the recipients. One of the primary critiques of the 1998 Tobacco Master Settlement Agreement was that states and municipalities could use the settlement funds for any purpose. Many states, including West Virginia, used (and abused) those funds to plug holes in their budgets, fund infrastructure improvements, and, in the case of West Virginia, fund teacher pension funds. This lack of direction and oversight meant that relatively few funds actually went to provide healthcare, cessation, or prevention services. Despite this, adult smoking rates have largely plummeted since 1998 but remain relatively high in Appalachian and Midwestern states (Figure 1).

Figure 1 – Current Cigarette Use Among Adults (Behavior Risk Factor Surveillance System) 2019

Source: Centers for Disease Control and Prevention. (2021, October 22). Map of Current Cigarette Use Among Adults. https://www.cdc.gov/statesystem/cigaretteuseadult.html

Negotiators appear to have learned from that mistake, and the National Opioid Settlement is different. However, while the settlement agreement requires that 85% of the funds going directly to states and municipalities must be used for “…abatement of the opioid epidemic,” the settlement doesn’t go so far as to enumerate what qualifies as “abatement.”

According to Kaiser Family Foundation reporting, funds from the settlement are split between states and are then divided in varying percentages across state agencies, local governments, and councils that oversee opioid abatement trusts. But, there has been little transparency around the settlements, including how much each state is received, how those funds are then divided, and how those funds will be used. To date, just 15 states (Arizona, Colorado, Connecticut, Delaware, Florida, Idaho, Massachusetts, Minnesota, Missouri, New Hampshire, New Jersey, North Carolina, Oregon, South Carolina, and Utah) have explicitly promised to report 100% of their Distributor and Johnson & Johnson settlement expenditures. These promises are not, however, legally binding, and recent moves by certain state administrative and legislative bodies to make private information that is statutorily mandated to be public under state Sunshine Laws bode poorly for those hoping to hold states accountable for their use of the funds.

There have been some successful efforts to track the distribution of national settlement funding out of the National Academy for State Health Policy (NASHP). Their map, however, is limited in that it only covers funds from that National Opioid Settlement, meaning that states that chose to continue pursuing additional damages (i.e., West Virginia, Alabama, Oklahoma, and Washington) are not tracked on the map. In addition to the interact map, NASHP provides a pretty comprehensive breakdown of how each state is using opioid settlement funds, including those states that did not participate in the national settlement.

Because we’re still in the early days of the settlement disbursements, there’s not really a great way to measure whether or not the funds will be successfully utilized, nor whether or not the abatement programs will actually have an impact. What we have seen outside of the settlement is that there is little consensus between states on how best to approach the continuing opioid epidemic. While some states increased access to harm reduction services, others have reduced access to, heavily regulated, or eliminated those services altogether.

In states where the opioid epidemic has become part of the fabric of life, such as Indiana, Kentucky, Ohio, and West Virginia, anecdotal reports and some limited research have found that, while additional and public health professionals are actively attempting to implement policies, plans, and interventions to openly and positively confront the opioid crisis, state residents are simply exhausted after dealing with over twenty years of devastation, loss, and both perceived and real destruction to their ways of life.

On the anecdotal front, I recently returned to Eleanor, WV, where I briefly lived and attended school and where my father taught music. What I found made my heart ache: the town’s lone shopping center essentially abandoned and left in disrepair; a middle school whose track and football field (which are still actively used by students) so destroyed that the track was little more than broken concrete loosely interspersed between fields of overgrown grass and bleachers literally tilting from rust and overuse; a set of buildings that once served as some of the town’s few apartment buildings literally burned out and boarded up with graffiti-covered plyboard; school bus stops that looked like they’d been hit by a tornado, and nobody repaired them.

We’re not talking about a major metropolitan area—we’re talking about a town of just over 1,500 residents that carries the moniker, “The Cleanest Town in West Virginia.” And the devastation didn’t stop there. I spent the next hour or so driving along the routes I used to travel as a kid and teenager, and every place that once held a great memory for me was absolutely destroyed or so badly damaged as to be wholly unrecognizable.

When I go through Facebook to check on friends from my time in Eleanor, a significant percentage of them are either recovering, in active use, or have lost their lives to the opioid epidemic. Even after working in the public health and advocacy space for more than fifteen years, the realities sometimes feel remote, and this drive allowed me to see what the opioid epidemic has done to West Virginia: it has deprived us of hope that things can or will get better. What’s more, our state legislature seems determined to make things worse.

These are the states and towns where opioid settlement funds are desperately needed, but it’s unclear whether or not they will receive or utilize them well. I know that I will be actively following how these funds are used in Appalachia, particularly in my capacity as Founder and Executive Director of the Appalachian Learning Initiative (APPLI, pronounced like “apply”).

When Anti-Equality Means Anti-HIV

As a teenager in Western Illinois, the educational content I received on sexual health consisted of what can best be described as “MadLibs Sex Ed” - sheet after sheet of entire sections of a book, meticulously handwritten by my teacher with various words replaced by blanks. It stands to reason then that my functional knowledge of this content also had some gaps. In the years since, my world has drastically shifted as has the world around me. I came out, transitioned, and found my footing as a queer and trans health advocate, all the while access to comprehensive sex ed has remained polarized despite gains made in HIV prevention and treatment such as PrEP and U=U (Undetectable=Untransmittable). It is amongst this backdrop that I learned that the great State of Iowa had recently put a sweeping bill into law - SF 496 - that, under the guise of parental rights, eliminates the requirement of age-appropriate information about HIV/AIDS and HPV.

To say this is concerning is an understatement. By eliminating the mandate of HIV education, the state of Iowa is essentially choosing the path of willful ignorance on behalf of its young people. The State of Iowa would have one believe that young people are either too young to safely know about sexuality or are certain to have a parental figure able to competently have “the talk” with them in such a way that the necessary content will be covered. The reality is that the Centers For Disease Control and Prevention’s (CDC’s) Youth Risk Behavior Survey from 2021 found that 1 in 5 high school students is currently sexually active, and among those, only 52% used a condom the last time they had sex and less than 7% had been tested for HIV or STIs.  Additionally, In the United States, 20% of new HIV diagnoses in 2020 were among young people aged 13-24. Earlier this month, Iowa Public Radio noted that despite national new HIV infection rates falling overall, Iowa’s new infection rates have remained steadfast. It would seem that now is not the time to stand down on HIV education efforts.   

Truly comprehensive sex education empowers individuals with accurate and evidence-based information about HIV transmission, prevention, and treatment. By teaching individuals about how HIV is transmitted, the importance of condom use, regular HIV testing, and the use of PrEP and nPEP, comprehensive sex education equips folks with practical skills to protect themselves and their partners from HIV transmission and unintended pregnancy. Additionally and equally importantly, comprehensive sex ed, when done well, stresses the importance of communication, negotiation, and consent, which are essential elements in fostering healthy relationships throughout the lifespan and even outside of sexuality-based contexts.

It is also important to note that the same law that eliminates the requirement of HIV education also eliminates any mention of sexual orientation or gender identity through the sixth grade. As a queer and trans person raised in a similar environment, I spent my childhood and adolescence staring out across the corn and soybean fields, intensely aware that I was different yet with no feasible outlet (or Internet) to understand why. This bill (and the onslaught of others like it elsewhere in the U.S.) targets the exploration of sexual orientation and gender identity and hopes to harken back to the bad ol’ times when access to information was limited and supportive resources were scarce. Interestingly, this bill also includes mechanisms to make it easier to ban books in schools and explicitly prohibits students from serving on committees that determine or provide recommendations concerning banning books and other materials from school libraries. Because not only do we want young people under-informed about their bodies and their options, we also want to make sure they don’t dare have agency about what happens in their school - yet we hope for them to be good and engaged citizens. How interesting and perfectly sensible!  

What happens next is both predictable (in that some of us have lived it before) and preventable. In the Mad Lib, SF 496 of it all, young people will not get access to the information they need to make sound decisions or to feel less isolated. There will still be gay young people or trans young people - just less understood by their peers and less likely to see themselves in the literature at their schools. There will be more young people who become HIV positive and unknowingly transmit it to others, and because removal of HIV education means removal of HIV testing information, there will be more people who have no idea about what testing means, how frequently to do it, and where one can do it. Therein lies the work for HIV advocates. The State of Iowa has created a “tough row to hoe” as they say in my hometown, but I take solace in the fact that whether overlooking the cornfields, the beaches of my adopted home, or the haze of a city elsewhere in the world, HIV advocates don’t give in and they don’t give up.

The Necessity of Patient-Centered 340B Reform

On the issue of any health policy discussion, many, powerful stakeholders are inserting their priorities and interests, working to be the “most favored” entity group in any final outcome. For the Affordable Care Act (ACA), some fights were seen between providers that asserted some feigned “moral” objection to any given type of care, others included insurance companies fighting to get a bigger piece of the subsidy pie or establishing themselves as “managed care organizations” to take over management of Medicaid programs. To this day, Judge Reed O’Connor has ruled on the ACA more than any other federal judge outside of the Supreme Court. But repeatedly, despite the political stump speeches and the claims of high ethical priorities from other stakeholders, actual patients do not tend to dominate in terms of who benefits most when health policies are enacted or when reforms are needed. The 340B Drug Discount Program is no different. In fact, serving the intent of the program is at the center of the patient-centered reform movement.

Often these fights happen without sufficient focus on how they impact patients. Providers, particularly provider administrators, and payers (public and private) are well-funded enough to out-shout patients and then claim some paternalistic insight as to what will “really” benefit patients. Having someone speak for us is not where we end up being the “winning” stakeholder. It’s part of why patient self-determination is at the core of The Denver Principles. And, again, 340B is no different in this regard.

Bad actors in this space continue to tout prioritizing patients while doing…not that.

For a recent example in a long line of examples, Allina Health System was routinely denying care to patients, despite being designated a “non-profit” health organization. Indeed, in that specific health system, not only were patients denied care for having a balance or struggling with paying medical bills, as evidenced by the system’s less than half of one percent charity care rate indicates patients weren’t being made aware of the system’s own financial assistance policy even when facing collections.

Collections…

Hospital-related collections are the driving factor for health-related GoFundMe and other, similar crowd sourcing, mutual aid sites. A pregnancy complication. A non-life-threatening injury, like a broken arm or a potentially terminal one, like a cancer diagnosis. Regardless of the particular causes, patients needing care and not being able to afford it is the throne in the side of millions of Americans. Medical debt touches more families than even student debt, with one estimate showing at least 11 million owing more than $2,000 in medical debt and at least 3 million owing more than $10,000. And unlike student loans, medical care is an absolute necessity of life.

We need to be clear, some 75% of adults with medical debt owe that debt to hospitals. It isn’t “mom and pop” providers (though hospitals are buying them out at an alarming rate) or your local community clinic. The vast majority of “medical debt” is really just hospital debt. And that medical debt – it’s not evenly distributed. An Urban Institute analysis from 2022 found Black Americans experienced medical debt at a higher rate and higher amount than their white peers. But looking at Bon Secours, an entity that took these vital dollars from Black communities and reinvested them in wealthier, whiter communities, we can’t be terribly surprised to see this data on debt and predatory practices are tinged with racist impact.

We’ll gently remind our readers that equity-minded persons and entities prioritize “impact over intent” is a very real thing.

These things are so sufficiently related that the Los Angeles County Department of Public Health issued a report suggesting the most efficient way to handle the medical debt crisis was for hospitals and mega-providers to pony up and actually meet their charitable service obligations. Meeting those charitable missions thereby reduces medical debt, addresses at least one aspect driving health disparities (financial toxicity), and ensures those program revenues are being geographically oriented to serve the most medically marginalized populations in this country. That includes incentives to address hospital and pharmacy deserts, whereby the experience of patient communities has been pilfering followed by abandonment.

Here’s a simple fact: reforming 340B to better meet the intent of the program does not pose a threat to those entities already meaningfully serving the intent of the program – serving patient needs.

Mid-Year Public Health Policy Update

Ya’ll…the last 4 months have been wild.

Let’s start with the “win”, shall we?

Last week, the Supreme Court of the United States (SOCTUS) issued its ruling in Talevski, authored by Justice Jackson and siding 7-2 in favor of patients’ private right of action to initiate lawsuits when their rights issued by law or regulation relative to a federally funded program are violated by an entity paid under that program. Now, the Taleski family still has to go back to district court to fight the Health and Hospital Corporation of Marion County (HHC) – SCOTUS just denied the effort by HHC to claim patients didn’t have a right to seek remedy when the payor was the government. As we described in January, this idea that patients couldn’t initiate lawsuits when federally funded programs weren’t administered fairly or didn’t comport with the statutory language or regulatory definitions is pretty bonkers. Indeed, for most actions regarding any kind of federally funded programming, the government typically comes in after the fact and those injured have to initiate the court processes themselves. Some advocates, particularly disability and Medicaid advocates, called the potential of the court to rule restrictively in Talevski “the Dobbs of Medicaid”, and urged the parties to consider settling ahead of a ruling. However, the potential crisis was averted because, as Justice Jackson put it, “Hewing to [the relevant statute]’s text and history (not to mention our precedent and constitutional role), we reject HHC’s request, and reaffirm that ‘laws’ in [the statute’s text] means what it says.”

Fancy that, laws meaning what they say.

Speaking of laws and problematic folks tryna skirt them, the 5th Circuit Court of Appeals heard oral arguments as to the stay – not the whole merits of the case – of Judge Reed O’Connor’s effort to strip the Affordable Care Act’s (ACA) preventative coverage mandate by way of extraordinary bigotry – targeting HIV prevention medication because “ewww, the gays”. As our friend, Chris Geidner, over at Law Dork covered those arguments and boy howdy! I wouldn’t wanna be Jonathan Mitchell – well for a lot of reasons but this one is pretty good, too. Mitchell’s name should look familiar as he’s arguing for book bans, helped author Texas’ head-hunting abortion law known as SB8, and is, in general, a deeply rotten human being. During thee oral arguments Mitchell fell more than a little flat, in no small part because the Department of Justice’s attorney, Alisa Klein, was gracious in asking “what’s the harm in putting in a stay?” In essence, she argued the physicians that Mitchell represented – who have themselves claimed to have never personally administered to an abortion or anyone needing HIV-related services but might, maybe, one day have to help a patient who experienced adverse events as a result of these extremely safe medications on the off chance they respond poorly to them – don’t actually have a tangible harm in putting off implementing O’Connor’s “universal remedies”, while some 2 million health plans as an industry and millions of patients across the country certainly will experience an impact if the ruling were to go into effect while being appealed. Mitchell kinda fell flat footed and basically asked the court to speculate what would happen if the stay wasn’t implemented. Hint: Courts aren’t actually supposed to pull conclusions out of thin air, “facts” must be presented inside of defined rules. So Mitchell then hedges cuz everybody suddenly seems real skeptical in how this might relate to standing and he asks of he can maybe meet with the DOJ to come up with some settlement agreement between the parties on the stay.

Now for the not so good news and there’s two bits to this one we’re gonna need to watch for quite some time; 1. Medicaid unwinding and 2. public health funding claw backs in the debt ceiling deal.

Last week, CANN hosted it’s third and final Community Roundtable in a series on COVID-19 impacts on public health and all the bad news is related to that intersection.

Because the House and the Senate voted to end the COVID-19 public health emergency a month early, Medicaid’s continuous coverage unwinding began pretty chaotically. To literally no one’s surprise, millions of folks are already losing their Medicaid coverage and not necessarily because they don’t qualify. The administrative or procedural disenrollments happen not because of a person or family no longer being qualified for Medicaid, but because a program administrator has not received necessary document responses. But the thing about that is, not a whole lot of folks who gained coverage for the first time during COVId-19 actually know a whole lot about the process, according to a Kaiser Family Foundation survey. And not every state is making it easy. Indeed, Arkansas and Florida are in a massive rush to get folks off Medicaid rolls – so fast that advocates are begging those states’ governors to slow down the process in order to reduce the risks of losing people to care who might otherwise qualify. Those states’ governors aren’t likely to respond to these pleas, despite guidance from the Centers for Medicare and Medicaid (CMS) to “not rush” the process. Those disproportionately at risk for being thrown off Medicaid are also those who are most at risk for acquiring HIV or already living with HIV and being covered by Medicaid. Again, about 40% of people living with HIV are covered by Medicaid, it stands to reason our patient population is at risk of potentially falling out of care if these processes are rushed.

Back in April, CANN reviewed annual sexually transmitted infection (STI) surveillance data released by the Centers for Disease Control and Prevention (CDC). In doing so, we pointed out the potential hazards of the Biden Administration failing to uphold its promise to reinvest in public health programming, specifically million dedicated to replenishing the workforce via disease intervention specialists (DIS). Those dollars were promised under the American Rescue Plan (ARP) but, as with all federal programs, take time to disburse. In the case of workforce development in state health departments, that means identifying an appropriate vendor to contract with to provide training, then contracting them to develop a curriculum, then giving guidance as to qualifying certification, then disbursing dollars to contract provider entities, then actually hiring people (in which there’s serious churn), training them, and so on. It takes time. But states weren’t quick to use those dollars and many of them remained unspent as the debt ceiling approached. A late-minute deal was struck between the White House and House Republicans in which certain public health funding allocated under the ARP are being clawed back. How this impacts our nation’s ability to provide meaningful public health services and address rising crises like STIs, we’ll find out in the worst possible way. For what it’s worth, our friends over at the National Coalition of STD Directors has called on the Administration to protect the public health workforce in light of the country’s first STI National Strategic Plan and how cutting those dollars risks any tangible ability to respond.

Advocates have tons more to pay attention to as the Biden Administration begins responding to this state legislative session’s “Hate Slate”, targeting LGBTQ people and our care. And because Congress is working to address things like reforming pharmacy benefit managers and 340B.

In all, advocates should work to focus on their strengths, strengthening relationships with service providers and legislators – sharing the human costs of these moves – and taking care themselves. With so much going on all of the time, we have to celebrate our wins while fighting for a fairer system serving patients. In order to do that, we have to also take care of ourselves.

Jen’s Half Cents: Digging Deep on Leadership Equity in HIV

Much focus is given to the “noise” leadership from advocacy organizations have to offer. Public statements are signed by folks with titles like Chief Communications Officer or Executive Director. Media interviews focus on selecting personalities based on their organizational role. This isn’t necessarily a bad thing. It’s a chance to set public narratives and share personal backgrounds in a storytelling fashion…it’s how we humanize what often feels like a faceless discussion. That humanization is critically necessary for effective advocacy. Patients, people living with HIV, are not blots of ink on paper or some series of numbers assigned in a budget. We’re more than the “black and white” of a grant application. We are certainly more than our titles or our jobs. We are whole persons with a plethora of experiences and aspirations and families and communities that depend on us in all variety of ways.

There’s a quality of those ongoing discussions of public health that’s enriched and made more effective, more tangible when those speaking to the issues also live those issues. The discussion itself, at least with regard to HIV, centers on issues of equity across the lives of those most affected – economic equity, health, education, and so on. The quality of that discussion is so sufficiently elevated that we built community principles which are meant to guide our engagement; Meaningful Involvement of People with AIDS (MIPA), the Denver Principles, and so on. Hell, the statutory requirements of the Ryan White CARE Act includes these ideas in requiring recipient jurisdictions to have planning and advisory councils.

So must our organizational leadership reflect these ethical directives in exactly who sits in those seats and their experiences in getting there.

As we begin to see some, though not enough, generational shift in HIV leadership, how we get there is going to matter as to our sustainability.

For those not “in the know”, an unsurprising fact of this generational shift is the “new” leaders talk to one another about how we’re navigating those changes. For me, it was the absence of a mentor in Bill Arnold’s death. For others, it might look like fighting an institution’s inclination to rely upon previous leadership to undermine decisions of the current or incoming leadership, for others still, it might look like founders prioritizing legacy contacts over that of newer blood. We need places to vent but also to share strategic alignment, which might look different than things have in the past.

We are, after all, each other’s peers in every professional respect.

In discussing with a colleague their experiences with how these shifts feel very reminiscent of the very problems we’re being tasked to address by our mere presence, they shared the following, “The intersections of founder’s syndrome and white supremacy are profound and real and exhausting. For all the emphasis we put on new Black queer leadership, let’s also hold the old leaders accountable for not letting go.”

My colleague… my friend asked of anonymity if I were to include this quote anywhere. I’m endlessly grateful I have earned their trust and will work to continue to earn their trust.

And we really do need to do more than sit with this idea if we’re to not beat down the fabulous innovation and talent that awaits us. The time for “sitting” and reflecting on how our leadership might be more reflective of the epidemic, how we might address “subtle” (it’s not subtle, ya’ll) slights and “cultural competency trainings” aren’t going to do it.

HIV diagnoses have not meaningfully declined in the last decade in the United States, except for white, gay, bisexual, and same-gender loving men. Our overall leadership, the slow pace of generational change, and the barriers to meaningful leadership change are all part of the reasons for that.

We will not make meaningful progress by doing the same things, with the same people, over and over and over again. We will not break chains of racism or misogyny or stigma or ableism or any other bigotry by requiring a new generation to perform in the environment in which those…less than palatable ideas flourished to begin with.

HIV not only needs to consider the necessity to expedite leadership changes but how we get there.

How do we ensure we’re not burning out bright stars before they even start? How are we actively planning for success in succession? How is old leadership, including board members, releasing its idea of how thing “should” be, going beyond “allowing” new leadership to guide, and moving forward with enthusiastic support for a different vision of how to get to the same goal?

“How” matters as much as “who” or “when”.

We need to dig deep to ensure the equity we seek in the world around us is also reflected in the leadership guiding us and the experiences of those coming into leadership.

An Expression of Support for Basic Human Decency

Earlier this week, ADAP Advocacy Association and Community Access National Network (CANN) issued a joint statement announcing an embargo of each respective organization’s patient advocacy and education activities within the state of Florida. Both organizations also cited a need to protect advocates and patients from outside of the state from the very real dangers associated with traveling to the state, while also emphasizing that both organizations will continue to support local advocates in the state as they work to create positive public policy changes for Floridians living with HIV. The decision to adjoin both the ADAP Advocacy Association and the Community Access National Network to the previously issued formal travel advisory by the NAACP wasn’t taken lightly because maintaining strong ties to the community is important in generating effective advocacy. The move wasn’t a political statement either, but rather an expression of support for basic human decency.

The announcement comes after the state’s governor, Ron DeSantis, signed into law a series of bills targeted toward harming Black, Brown, LGBTQ+, and immigrant people. The transgender community was probably singled out more viciously than any of the marginalized communities throughout this hate-inspired Florida Legislative Session. Make no mistake about it why this effort to enflame a “culture war” is an issue of organizational values and something quite personal to both of us. The non-trans guy here taking issue with the fact that the trans guy here now cannot take “a leak” without fear of being charged with a felony has nothing to do with politics and everything to do with basic human rights.

The fact is we both previously lived in the state for many years – it’s where we started our HIV policy work, even before we knew one another. It is where we met over a decade ago. Upon reflection, we still can regularly be found discussing mutual friends from Florida, those still living and those who have passed on, in different phases of their lives. 

From recalling Bishop S.F. Makalani-MaHee's testimony to the Florida Legislature in 2016, against a bathroom bill (which failed that year), to his death on Transgender Day of Remembrance in 2017, part of this internal discussion was a reflection on the deep history he had with advocates serving both the Transgender and HIV communities of the state. What we’re witnessing right now in Florida is challenging for us, personally and professionally, but state-sponsored discrimination, hate, and stigma drew a line that cannot be ignored.

In 2017, Human Rights Watch published an important report, Living At Risk: Transgender Women, HIV, and Human Rights in South Florida and the very same year ADAP Advocacy Association published it’s issue paper, Transgender Health: Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS Under the AIDS Drug Assistance Program. Both of us worked on the ADAP project, and it was important for a transgender advocate (Jen) with lived experience to lead in writing model policies meant to serve Transgender People Living with HIV. The decision to issue a travel advisory in Florida for people living with HIV is rooted in disparities and areas of improvement emphasized in those two reports.

Much of our hearts belong to Florida for the dedication and innovation the people of this state can and do offer, despite every unnecessary public policy challenge they face. People like Mick Sullivan and Donna Sabatino (formerly with Tibotec Therapeutics), Connie Reese and her amazing work with Simply Amazing You Are (SAYA) in Miami-Dade County, Riley Johnson promoting trans equality in accessing medical care via RAD Remedy, Michael Ruppal’s leadership with The AIDS Institute, and the late Tiffany Marrero, who served to voice the experiences of vertical transmission patients and Black Women and only recently left us. Heck, Trelvis Randolph and Maria Mejia both reside in South Florida, and they serve on CANN’s board of directors. These folks not only are colleagues, but they are friends and expressing concern over traveling to a place once call “home” saddens us.

But some things are larger than us. Recognizing the inherent roots of racism, which has prompted the NAACP to issue a travel advisory, our joint statement read, in part:

The state of Florida's moves to harm Transgender people, Black and Brown communities, and immigrant families undermines the exceptional work the state's Health Department has done in the last several years and only serves to further existing health disparities affecting these communities, particularly as it relates to HIV. For example, according to Florida's own data, while Black and Hispanic/Latino communities make up about 15.6% and 26.7% of the state's population, respectively, these same communities represent 37.7% and 39.6% of HIV diagnoses. Put another way, in Florida, while white people experience a rate of HIV diagnoses of 8.5 per 100,000 people, that rate among Black communities is 51.8 and for Hispanic/Latino communities it's 31.7.

Similarly, Florida has, in years past, made extraordinary strides in ensuring transgender people can access HIV related care, specifically by integrating best practices and guidance from the Health Resources and Services Administration (HRSA) on integrating gender affirming care into HIV care provision. Indeed, as a result of these moves, transgender women represent some of the greatest successes in linkage to care, retention in care, and viral load suppression of any demographic in the state. Recently signed bills prohibiting state contracted clinics from providing gender affirming care will have a dramatic affect in reversing these long sought after wins. 

Make no mistake, we are frustrated with an apparent lack of involvement from the federal agency charged with implementing the Ryan White HIV/AIDS Program. Because Ryan White program dollars are passed through the state and then contracted with counties, local areas, or directly with a provider, and because other health initiatives of the state are also part of how providers in Florida acquire funding to provide public health services, they may be prohibited from providing gender affirming care at all - regardless of where those dollars originate (state or Federal).

It is incumbent upon HRSA to provide guidance beyond ‘allowable’ uses and inform that state it has contractual, fiduciary responsibilities associated with its grant and subrecipient contracts to ensure these dollars serve these communities. HRSA must move beyond the language of ‘allowable’ uses to ‘expected integration of best practices.’

In many situations, we have been willing and able to confront harsh environments. Indeed, we recognize the need to be present in the spaces where political forces wish to silence us. However, Florida has crossed a line in becoming hostile to the very existence of Black and Brown and Immigrant and Transgender people, those same communities most affected by HIV. The people who enacted these hateful laws were motivated by hateful politics; our response is motivated by concern for the people we’re charged with representing in our community…many of whom feel silenced. This is a line which we cannot cross and still consider ourselves as living the values we espouse.

We came to the difficult decision that neither the ADAP Advocacy Association or Community Access National Network will host any advocacy or educational event in the state of Florida. We will continue to support local advocates and people living with HIV residing in the state, including scholarship support for intrastate travel by local advocates. We will continue to offer analysis on the state's activities. But we will not ask advocates from outside of the state to risk their mental health or physical safety to travel to the state.

Lived Values: Trans Employment Survey of National HIV Advocacy Organizations

In the summer of 2020, the U.S. Supreme Court ruled the wording of Title VII of the Civil Rights Act specifically around “sex” and previous precedent regarding “sex stereotyping” protects workers from discrimination based on their gender identity or sexual orientation. Bostock was a landmark decision that many social justice advocates across the nation hoped would open the door for extending similar gender and sexual orientation protections in other titles of the Civil Rights Act.

While some circuits are considering cases which might reflect broader protections, we have yet to definitively see how this ruling might impact the ways in which the higher courts may determine whether or not they feel LGBTQIA+ people deserve protection when accessing things like housing, education, and healthcare (spoiler alert: we do). In the meantime, even with active federal workplace protections, many LGBTQIA+ folk are still struggling to find and maintain the employment and employment benefits they need to survive, let alone thrive.

We know that previously existing workplace protections under the Civil Rights Act related to race, color, religion, sex, or national origin have far from eradicated experiences of racism, misogyny, ethnocentrism and any other discriminatory experience that these kinds of rulings are intended to ameliorate.

While these protections do offer some hope that a person with the right access to resources might be able to fight back if their rights are violated, many more average LGBTQIA+ workers, especially those with oppressed intersecting identities, are left wondering the same thing: “Will these rulings actually make any difference in my life?”

It feels entirely relevant to wonder about the durability of the few federal protections the LGBTQIA+ community is offered considering the current maelstrom of state-level legislative attacks on our community. As of May 2023, over 500 bills that aim to limit the rights of LGBTQIA+ people have been filed nationally, and organizers in nearly every state have been exhaustively strategizing in response.

In the midst of these attacks, many advocates have continued to champion the fight to update their own state employment anti-discrimination laws to mirror the protections for gender and sexual identity that Title VII offers. In many states, this is no new battle. For example, advocates in Louisiana came to their legislature for the 30th consecutive year, demanding protections for sexual orientation and gender identity this legislative session…but to no avail.

Last week, many passionate activists (myself included) held the Labor Committee chamber floor for 3 hours of moving testimony in which community members relayed the ways that homophobia and transphobia had negatively impacted their ability to find and maintain work in Louisiana. Advocates have been laboring just as fiercely in the sixteen other states that also have yet to expand these protections for their citizens. I cannot speak for how organizers are feeling in other states, but I can confirm that in Louisiana, many of us are deeply tired.

People who have dedicated their lives to HIV advocacy are no strangers to the kinds of personal and collective tolls that result from having to constantly fight for our community’s access to basic needs like healthcare, housing, and employment. A silver lining of this truth is that our community also has a rich legacy of developing community-level supports when governmental accommodations fall short. HIV focused organizations have been well ahead of the curve in promoting the benefits of hiring staff that reflect the communities they serve. This has resulted in generations of LGBTQIA+ identified public health workers starting their careers at organizations that focus on providing HIV care and prevention services… but is merely hiring people from our community enough to make an organization a safer space for LGBQ and transgender and gender diverse workers?

It can be challenging to shift the broader culture of a LGBQ-friendly work environment to adequately accommodate transgender and gender diverse employees. While there are noteworthy steps that can be taken to create safer work spaces for staff based on their sexual identity, creating work spaces and benefit designs that are reflexive to the unique needs of gender diverse people is a far more nuanced endeavor.  Precious few HIV focused organizations have had access to the kind of technical support or assistance they would need to more holistically consider how their hiring and promotion systems – that were likely designed to meet the needs of cisgender staff – might be insufficient when accommodating gender diverse employees. Hiring us with good intention is not enough.

“We cannot be tokens to garner funding at the expense of funding ‘by-for’ advocacy and service organizations in trans and gender diverse-centered HIV advocacy,” Jen Laws, President and CEO of Community Access National Network (CANN) shared with me. “We won’t achieve equity in access to treatment or quality of care, we won’t end this epidemic by waving a handful of trans staff in front of funders like a flag. We have to meaningfully invest in accessible benefit designs, leadership, and programming that reaches deep into gender queer spaces,” Laws continued. “The Denver Principles and decades of advocacy have shown us this. It’s time we hold ourselves accountable to these ideals.”

For these reasons, CANN is launching a nation-wide assessment for HIV advocacy organizations to help better gauge their strengths and support needs about hiring, promotion, and good benefit designs serving the needs of transgender and gender diverse staff. The survey will be accompanied by an anonymous employee experience survey to better inform CANN’s future goals of providing capacity building and training opportunities related to hiring and maintaining gender diverse workers. Most importantly, while the results of the survey will be de-identified, the goal of this assessment will be to create a sense of accountability within the culture of national HIV advocacy.

We absolutely have the power within our own organizations to advocate for evolving internal practices that would make it easier for gender diverse people to flourish. Now, more than ever, we need to be in communication with each other to ensure our values related to workplace equity are in alignment with our practices to create work environments that are supportive for people of all genders. “Integrity is integrating our values into our actions,” as Jen likes to remind his audiences. We hope you’ll join us in filling out the survey – we need your voice in our efforts to build an HIV advocacy movement that makes space for all of us to join and endure in this fight, together.

To learn more, please contact me at dietzconsultingllc@gmail.com or Jen at Jen@tiicann.org.

Several national HIV advocacy organizations received an introduction to this initiative in the last week. If your organization did not receive an introduction and you would like to see your organization participate, please, reach out to the emails above.

MPOX Resurgence Points to Potential Trouble Ahead

Earlier this year, as part of Community Access National Network’s (CANN’s) Monkeypox (now MPOX, previously MPV) Response and Monitoring Project, this blog cautioned against premature declarations of “victory”, urged a recognition of the likelihood MPOX would become endemic to the United States, and relayed anecdotal reports of new MPOX infections, both breakthrough and naive. CANN’s concerns were and remain centered on insufficient vaccine coverage and screening among highly marginalized, highly affected communities. Very specifically, due to anecdotal reports relayed to CANN in January 2023, heightened concern exists regarding provider knowledge, willingness to screen when presented with symptoms, and willingness of public health agencies to take community reports at face-value, rather than paternalistically denying the potential or possibility of new outbreaks or breakthrough cases.

Since then, a study out of France has identified a new cluster of MPOX cases, of which most had some level of previous vaccination, with more than half having had a “complete” vaccination cycle (several potential situation are qualified as “complete”, including a combination of childhood smallpox vaccination and “3rd generation” vaccination in 2022 as part of the 2022 MPOX outbreak). Of these, none were associated with a specific event – which indicates independent exposure among a social-sexual network and not an “index” event.

Similarly, a recent report from Howard Brown Health indicates there is a resurgence of MPOX virus cases in the Chicago area since April 17, 2023. Since April 17th, seven new cases have been identified in the area, representing a departure from the three months prior, when just one case of MPOX was identified in the area, and the highest case rate since November 2022. Patient data related to these cases have not been made available.

This increase in cases in the Chicago area is concerning, particularly as the city is about to see an influx of tourists for this year’s International Mr. Leather (IML) contest from May 25-29, 2023. The event brings in thousands of LGBTQ+ people from across the world for a variety of contest events, parties, and social gatherings where the populations most at risk of contracting MPOX—Black, Indigenous, and other People of Color (BIPOC) Same Gender Loving, Gay, and Men who have Sex with other Men (SGMSM) and Persons Living with HIV/AIDS (PLWHA)—will be in close contact with one another in crowded spaces often wearing little clothing, actively engaging in social-sexual environments, or otherwise increasing their sexual partners, often time anonymously, which will increase their possibility of being exposed to MPOX. To be clear, sexual activity in these spaces should be celebrated and effective interventions should be designed around how to empower fulfilling sexual activity while reducing risk of exposure.

After IML, Chicago will begin its 2023 Pride month, with the festivities to continue through the month of June—another prime opportunity for MPOX to spread from person to person.

In addition to the pressing concerns related to potential infections, this serves as an excellent example of why we should not be quick to call an end to public health emergencies. From almost the beginning of the 2022 MPOX outbreak, it was a disease that disproportionately impacted minority and underserved patient populations—those who were least likely to have access to or feel comfortable and safe seeking healthcare services that would lead to the identification, diagnosis, and treatment of MPOX, much less receive prophylactic vaccinations to reduce the risk of transmission.

Any time we call an end to a public health emergency where the disease primarily impacts underserved populations, we run the risk of de-prioritizing physician awareness of the disease. This is particularly true with MPOX, with which physicians outside of the infectious disease space were largely unfamiliar. Additionally, although vaccine supplies were increased by dividing the single subcutaneous dose into a two-dose intradermal delivery system, vaccine supplies were initially highly limited. Moreover, Black patients were the least likely to receive vaccination against MPOX, meaning that a priority population is still unprotected again a potential resurgence of the disease.

Another concern related to the spread of MPOX relates to the efficacy afforded by the vaccine over time. Few data are available about the continued protection of the MPOX vaccine, largely because this was one of the first use cases of the vaccine in a real-time setting with an adjusted dosing mechanism. If there are concerns about the efficacy waning, local health officials and event coordinators should make efforts to secure and provide vaccination services on-site at these very public, sex-positive events, and at a full single dose, rather than a two-dose series. While those vaccines may not provide immediate protection, they could serve as a prophylaxis against infection and transmission.

Ending public health emergencies almost always poses the risk of shifting attention away from populations where a disease may continue to flourish largely unchecked. We must remain vigilant and keep easily transmissible diseases at the front of our minds when providing services to those most at risk.

Advocates should remain engaged with their local communities, encourage ready responses from public health entities, and those same entities (contracted providers and state and community health departments) should be held accountable for being responsive, creative, and careful as community members and advocates identify potential cases and outbreaks.

HIV Advocates Gather in Nashville for Health Fireside Chat

From April 27th through 29th, ADAP Advocacy Association (aaa+) hosted its first Health Fireside Chat of the year. The series was rebranded to encompass a broader focus on public health, changing from the HIV/AIDS Fireside Chat to the Health Fireside Chat. Unlike previous Fireside Chats, Nashville’s event added an “ice breaker” activity, themed in light of the hosting city – a line dancing lesson, as well as a town hall meeting convened in partnership with Positively Aware. The additional half day of activities - including the ice breaker, townhall meeting, and meet and greet - allowed attendees to settle into conversation expediently after having a solid hour of good laughs, encouragement, and bonding. Once down to business, policy discussions focused on Tennessee’s politically-motivated decision to decline HIV prevention funding, reforming the 340B Drug Discount Program to better meet patient needs, and the intersection between U=U (undetectable equals untransmittable) and reforming HIV criminalization laws.

The townhall meeting, which was facilitated by Rick Guasco, Acting Editor-in-Chief of Positively Aware, started with recognition that Nashville was explicitly chosen as a hosting city due to the state of Tennessee’s rejection of federal HIV prevention dollars. While a later discussion was specific to that issue, the town hall dug into underlying (and broader) concerns around systemic discrimination as a driver of today’s HIV epidemic. Digging into how racism, as an example, manifests can be a touchy subject in any group, even among those who generally align. Such a charged set of topics, especially among HIV’s thought-leadership, can and does lead to transformational moments, particularly because creating a space of “internal” advocacy provides a chance for us to experience, and navigate, conflict amongst ourselves. That conflict and navigation also provides us a chance to grow together and to break down silos of interest, work, and thought. And this townhall did exactly that.

The first policy session, “Tension in Tennessee: Is an HIV Access to Care & Treatment Crisis Looming?”, lead by the O’Neill Institute’s Jeff Crowley, invited local advocates to discuss their internal view of Tennessee’s “troubles” with some national advocacy representation. While much of the discussion focused on the details of local communication and national assumptions, some discussion on how the state may implement its newly allocated funding (will the state’s budget continue to fund prevention efforts next year?), much of the conversation that followed was explicitly about how local advocates can communicate and collaborate with national advocacy efforts. What became clear from that conversation is much of the national and state level advocacy we tend to reflect fondly of when speaking on decades past is relatively fragile and not well-coordinated. Planning bodies have diminished to largely being provider groups and some don’t even meet – despite a statutory requirement to do exist. An attendee with capacity building expertise pointed out the need for investment in this space. Many planning bodies have been weakened by atrophy, others have faced a demographic shift (and as a result a change in the barriers and assistance needed in order to appropriately activate affected community). The discussion as a whole highlighted the extreme silos working against a cohesive and collaborative advocacy network necessary to support ending the HIV epidemic.

340B remains an important issue for HIV advocates. As such, “340B Drug Discount Program: The Issues Spurring Discussion, Stakeholder Stances, and Possible Resolutions?“ was the focus of the second policy session. Some of the advocates in attendance knew little about the program, so the discussion provided an excellent educational opportunity on how the discount drug program works. Laser focused on issues of health equity, Kassy Perry of Perry Communications Group lead the group to dig in – and quickly. Advocates less familiar with 340B were readily able to identify the need for reform when assessing reductions in charity care and increases in medical debt. The group readily recognized 340B as a powerful tool toward addressing health disparities, especially economic consequences for patients, and where those consequences can and do negatively impact entire areas of patients’ lives. Attendees from industry partners listened intently as advocates described their concerns and the need for the program to better reflect the intent in which it was established.

Day two concluded with attendees enjoying a meal with one another, and a round of singing “happy birthday” to Brandon M. Macsata, the ADAP Advocacy Association’s CEO, who turned 50. This was truly a moment (many of them really) in which attendees got to buy into my desire to ensure our colleague felt loved and celebrated, since we were all together. All told, it is very likely Brandon heard the song “happy birthday” some two dozen times or more throughout the event (and I sincerely encourage ya’ll to do so again, if you find yourself in a meeting with him during the month of May).

The final policy session, “U=U: Is 'Undetectable Equals Untransmittable' Changing the Landscape for HIV Criminalization Laws?“, focused on the intersection of issues between U=U and reforming HIV Criminalization Laws with the conversation hosted by Mandisa Moore-O’Neal, executive director of the Center for HIV Law and Policy, and Murray Penner, executive director of U=U Plus. Mandisa shared with the group the exceptional nature of HIV criminalization laws, but also how general criminal codes are out of date, furthering the HIV epidemic, and nearly exclusively used against Black and Brown people living with HIV. Mandisa also discussed how these laws can and are leveraged to further domestic violence (and coercive control). Murray then discussed how laws which allow for “affirmative defenses” only help those people living with HIV which can readily access and maintain care. All of which emphasized that the design of these laws assume that because someone is living with HIV, they are necessarily presumed “guilty”. Advocates discussed how to break silos, including the potential to partner in prosecutor and public defender education efforts. Advocates focused on health or with strong relationships with their local health departments, for example, might wish to participate in education efforts alongside legal advocacy organizations or a state Bar.

The Health Fireside Chat series remain an exceptional retreat to advance thought-leadership, deep-dive policy conversations, as well as often-under appreciated advocacy collaboration. The ADAP Advocacy Association plans to host additional Health Fireside Chats later this year in Philadelphia, PA, and New Orleans, LA.

Underrepresented: HIV Prevalence Among Transgender Men

At the United States Conference on HIV and AIDS in September of 2022, Sybastian Smith from the National Center on Transgender Equality and I talked with one another after a session focusing on trans masculine representation, data collection, and policy leadership development. We reflected on years of what we understood to be significant under-representation of transgender men and masculine persons in HIV – in research, in data collection and surveillance activities, in advocacy…everywhere.

There are complex intersections of experience that lead to this under-representation, in no small part because an unspoken assumption of transgender men is we transition from being cis-gender women who have sex with cis-gender women to being transgender men who have sex with cis-gender women. Therefore, our “risk” of acquiring HIV by way of sexual activity is astronomically low. However, that’s not always true. At the intersection of survival, the fluidity in sexuality that might occur was we transition (some people are same-sex attracted, therefore changing gender identity might also mean a change in who someone chooses to have sex with). Gay transgender men exist. Indeed, there’s a whole segment of the porn industry which is exploding in popularity that’s dedicated to transgender men who have sex with cis-gender men. And, anecdotally, gay transgender men tend to have the kinds of sex their cis-gender counterparts have and for the same reasons, rather than the kinds of sex cis-gender women have or for those reasons.

An added layer is the discrimination transgender men face in accessing health care. This includes public health activities which do not capture our data. Many “risk” assessment forms focus exclusively on identity and make assumptions as to what behaviors someone might engage in based on their identity. For example, when a cis-gender woman fills a form or discusses with an outreach worker, they’re generally asked about the identity of who they have sex with and if they engage in injection drug use. But discussion of what kinds of sex they have or what body parts their sexual partners have aren’t necessarily accounted for. And that lens is applied to transgender men. In fact, the Take Me Home screener questions ask what a requestor’s gender identity and assigned sex at birth are but only ask the identity of sex partners. For someone who is a transgender man who has receptive penetrative sex with a transgender woman, the “risk” assessment will miss essential behavioral data because of this.

This is just one of many ways in which transgender men are disregarded as men.

This isn’t significantly different from how transgender women have historically been “grouped” with men who have sex with men based on assumptions of behavior. However, transgender men have almost no representation in HIV data, despite this close mirror of considerations. Indeed, the Center for Disease Control and Prevention’s (CDC) webpages under “HIV by group” for “transgender people” only mention information about transgender women (prevalence and prevention challenges).

So it comes as no surprise for transgender men working and living in HIV spaces when two studies, one from New York and one from Germany, found that transgender men who have sex with men had a higher rate of HIV prevalence than the general population (at 2.5%). For good reason, some might suggest this could be an undercount. The data also found that only 24% of transgender men who have sex with men have ever had an HIV test and only 45% have ever had a STI screening, both significantly lower than their cis-gender counterparts.

If we are to address HIV in the transgender community, we need to include all of the transgender community. Resources should be allocated appropriately but not in a fashion which excludes highly affected, marginalized populations.

We need to include both identity and sufficient assessment of detailed behavior to design effective education and interventions.

Australia is on Track to End HIV…by Focusing on Treatment

Last week, researchers funded by the National Health and Medical Research Council of Australia published an assessment of Australia’s success in combatting HIV and how the country might meet its goals to end their domestic HIV epidemic. The study is remarkable in many ways and readers should be cautioned to appreciate the various differences in dynamics between the epidemic in their country of residence and Australia. For example, Australia has been willing to get creative with its policy and program environment and infrastructure to address barriers to care – something many other countries, including the United States, might face steeper challenges in doing.

The study, which focused itself in New South Wales and Victoria – the country’s most populous states. While these areas hold large urban populations, Melbourne and Sidney for example, they also have large rural geographies as they get closer to the interior of the country. This isn’t dissimilar to much of the United States, where the coasts and land boarders, to a lesser degree, are well populated and as you get closer to the interior of the country, that population becomes more rural. Rural and urban geographies present very unique dynamics in and of themselves. And those differences should be well-appreciated when considering the findings of the study.

Specifically, the study sought to assess “whether treatment-as-prevention could achieve population-level reductions in HIV incidence among gay, bisexual, and other men who have sex with men (GBM)”.

What’s most interesting about the study – though not necessarily surprising given historical evidence – is it found a positive correlation between increasing viral load suppression and reduction of new HIV diagnoses. But it’s not a 1-to-1 ration. The study found a 1% increase in viral load suppression was associated with a WHOPPING 6% decrease in new diagnoses. That’s not all folks – that decrease was AFTER an adjustment to account for pre-exposure prophylaxis (PrEP), meaning the 1-to-6 correlation between increased viral load suppression and reduction of new diagnoses was INDEPENDENT of PrEP uptake and use.

Now, that’s not bash PrEP. Rather, the authors argue that to achieve maximum benefit, PrEP should continue to be partnered with our understanding of treatment-as-prevention, or, as messaging goes, Undetectable Equals Untransmittable (U=U). Indeed, the data from the study spans 10 years, which means the authors were able to positively demonstrate how PrEP increases the successes related to treatment-as-prevention.

Authors conclude their work with a direct interpretation: “Our results suggest that further investment in HIV treatment, especially alongside PrEP, can improve public health by reducing HIV incidence among BGM.”

This work is especially important as the United States begins considering a nationalized PrEP program and making exceptional investments in doing so. This study very specifically reminds us that we will NOT reach our goal of ending the HIV Epidemic with PrEP alone…but we might with treatment-as-prevention. And if we were forced to do so with treatment alone, we might still get there if we could overcome barriers to care like stigma, unnecessary barriers to care like utilization management practices, employers leveraging their power in the private market, meeting people where they physically are, closing gaps between “available” and “accessible”, overcoming discriminatory actions aimed at harming those already most affected by HIV, and more.

There’s another advantage in not moving onto PrEP with a near exclusive fervor, HIV treatment is directly life-saving. It is the humanitarian and right thing to do to ensure people already living with HIV are receiving the care and treatment and resources and support we need to thrive.

Directly, this data shows us that we will not defeat HIV by only focusing on people not already living with HIV. Rather we must ensure the lion’s share of our work focuses on people already living with HIV.

There’s much work to do and much promise on the horizon.

I’ll leave advocates with this and a request to search internally.

In December, HBO will be releasing a documentary on the Honorable Nancy Pelosi. The trailer for it is out already. In one clip, one quote, Representative Pelosi, one of our dearest champions, summarizes where our work should guide us, “I came here to do a job, not keep one.”

New STI Surveillance Report – It’s Not Good

In late 2021, ProPublica profiled the efforts of a local public health worker, Mai Yang, Mai Yang, as she sought to track down a pregnant client recently screened for syphilis Yang was urgent in the need to find this client and get her curative treatment, three uncomfortable injections of penicillin, completed at least 30 days before giving birth. Congenital syphilis is a killer with a near 40% chance of a newborn dying or being stillborn. Beyond death, congenital syphilis risks a range of difficulties, from disabling deformities to cognitive dysfunction. COVID-19 impacts were readily felt throughout the story as Yang’s client, Angelica, struggled with housing, a language barrier required an interpreter, and, eventually, the clinic Yang sought to link Angelica to was not able to accommodate a walk-in appointment, despite Yang having gotten assurances they could.

Last week, the Centers for Disease Control and Prevention (CDC) released its annual sexually transmitted infection (STI) surveillance report for the year 2021, and the news, while not surprising in retrospect, is not good. Both syphilis and congenital syphilis cases rose about 32%, compared to 2020. 2020, on its own saw a moderate rise in both syphilis and congenital syphilis. However, the CDC notes 2020 as the most affected year in STI surveillance with a marked decreases in screening activities in much of 2020 and higher than previous baseline diagnoses throughout much 2021 (mostly around the 150% level but a massive spike well above 200% around November 2021 – or about the time of ProPublica’s report being published).

Gonorrhea and chlamydia cases rose, though not as dramatically. Herpes, despite being a prevalent STI, is not a reportable illness and thus not tracked in the annual report.

This marks the eight consecutive year of increasing STI diagnosis, as noted by the National Coalition of STD Directors and Association of State and Territorial Health Officials. The situation is dire, going forward. Public health offices across the country are expecting to see an exodus of staff in the next 5 years. Between low pay and poor benefits relative to the private sector and displeasure with supervisors (which may be attributed to a lack of flexibility befitting the modern world or political pressures exerted at the appointment level), young and even well-established professionals are planning on leaving this space. And none of that necessarily reflects struggles with private partners or contracted clinics, which are equally struggling with securing funding and meeting ever increasing demands to do more with less.

In the ProPublica article, former CDC Director Dr. Tom Frieden reflected on how the United States has a terrible tendency to go through “a deadly cycle of panic and neglect”. And the same might be considered here. When President Biden announced in May of 2021 that his administration would be working to secure funding for “tens of thousands” of jobs to respond to COVID-19 and support local public health officials, there was an implication those dollars (secured in the American rescue Plan) would also fund positions that had been left to atrophy or were usurped by COVID-19 activities – most notably, disease intervention specialists. But COVID-19 is winding down, in so far as the Biden Administration seems prepared to invest much in the way of workforce dollars, and that promise made in 2021, was supposed to extend through 2026. If comments from federal legislators last year were any indication, there’s not much hope yet in this Congress choosing to ensure funding is secured to help these programs meet their goals.

In a recent interview, U.S Food and Drug Administration (FDA) Commissioner Dr. Robert Califf said “misinformation” was a leading cause of a decline United States life expectancy. And while that may one element of the issue, an abject failure to appropriately fund, stay competitive with the private market, and retain the talent needed to execute public health programs is core and central to this issue. The latest STI surveillance report shows us this plainly. Technology can only do so much in terms of outreach and extending capacity – in order to meet the demands of public health, the human element must be sufficiently supported.

Advocates would do well to take the long-view of their work. It is critically necessary to support existing public health programming and to address disparities being laid bare by annual surveillance data in order to reach an equitable health dynamic in this country – health justice. We cannot get there without supporting public health entities, shielding them from the politicalization of their mission work, and ensuring they’re appropriately appreciated for the life-saving work they do. We cannot represent patients when we don’t know who they are. We must participate with our partners in elevating the STI crisis for what it is – a public health emergency.

Stigma: ‘The PrEP Penalty’

Since the beginning of the HIV Epidemic in the United States, advocates have worked to combat HIV-related stigma, and the populations most affected by it. That stigma, in no small part, originates from the messaging and official positions from the country’s foremost public health institutions and the government itself. Starting with the Reagan Administration’s labeling of affected communities under four specific categories, now referred to as the “4-H Club” (homosexuals, hemophiliacs, Haitians, and heroin users), some of those perpetuated by the Clinton and W. Bush Administrations, eased under the Obama Administration, and weaponized by the Trump Administration. Despite each of these past leadership regimes coordinating programing and funding to address the domestic HIV epidemic, they have all participated in certain furthering in stigma by policy, position, or language.

In response, advocates have largely targeted efforts to address social attitudes, with some effort to address policy issues which might define that stigma. One of the challenges of addressing stigma is appropriately defining the real-life experiences of people living with HIV and where, having been diagnosed with HIV, that stigma influences institutional assumptions and wherein power is exercised to affect a person’s life. Much advocacy combating stigma has been focused on modernizing state HIV criminalization laws. Advocates can and should be thinking more broadly, and specifically, around other areas in which people living with and at risk of acquiring HIV might be affected.

In February 2021, this blog published a piece defining that stigma in terms of family courts and child welfare systems and where advocates might find themselves involved in policy work to better protect families affected by HIV from adverse rulings or actions involved in custody and child welfare matters. This is but one example of where specific advocacy, leveraging existing protections, can and does dramatically affect the lives of people living with HIV for the better. Additional advocacy is necessary, including pressure on professional standards, continuing education, and licensing organizations to eliminate stigma and protect people living with HIV interacting with these systems. For example, what might it look like for the American Bar Association to promulgate ethics rules or specifically define that mentioning someone’s HIV status (or gender identity) in a child custody hearing is a breach of professional ethics worth sanctioning? In 1992, the Association of Family and Conciliation Courts warned of high-conflict parents trying to incite biases and assumptions of family court judges with making claims around their ex’s HIV status. These professional associations and those like them have incredible sway and should be realized as an opportunity for advocates to identify new allies.

One tool analyzing these concepts of stigma, and as a result identifying areas of opportunity for advocates to combat same, comes from Doron Dorfman, a law professor at Seton Hall University. In Dorfman’s paper, published in March 2021, The PrEP Penalty, the professor examines how stigma is institutionalized by various agents and agencies of the government as well as the attitudes (and stereotypes) behind the qualifiers of stigma. I got the chance to speak to Professor Dorfman on Thursday, March 30. It just so happened that morning, Judge Reed O’Connor issued a judgment in Braidwood v. Becerra which would gut the Affordable Care Act’s mandate for coverage of pre-exposure prophylaxis (PrEP) with no cost-sharing.

“If you look at the ruling itself, you can see clearly this isn’t about PrEP, per se, but about how O’Connor and the plaintiffs view PrEP as something that ‘encourages homosexuality’,” Professor Dorfman said, speaking to core of what drives stigmatization of PrEP. Recounting initial insurer refusal to cover PrEP and continued problems in ensuring payers are covering both the medication and related, required laboratory screenings for PrEP maintenance, Professor Dorfman argued these positions really center on a ”de-medicalization” of HIV prevention. This concept removes the nature of preventative tools as a medical necessity and conflates engaging protective measures with “enabling” “risk taking” or that patients are engaged in “risk compensation” – compensating behavior to mitigate negative health outcomes while still engaging in activities which are moralized as “undesirable”. Indeed, in his ruling, O’Connor ruled the Religious Freedom Restoration Act claims had standing and were legitimate because the plaintiffs argued providing insurance with PrEP coverage “facilitates and encourages homosexual behavior, intravenous drug use, and sexual activity outside of marriage between one man and one woman.” This argument failed to recognize that HIV can and does pose a risk between married, heterosexual, sero-discordant couples. O’Connor also flatly rejected that the government has a “substantial interest” in preventing new HIV transmissions – or the public health argument. The fact that the government has an interest in preventing new transmissions of an infectious disease of any kind is indisputable and this end of O’Connor’s judgment is likely the weakest of an already weak ruling.

Instead, Professor Dorfman says that patients utilizing PrEP should be appreciate for assessing a risk and working to mitigate the potential negative outcomes. Penalizing PrEP engagement due to these rather naked biases creates a “chilling effect”, discouraging people and whole communities from seeking out necessary medical care. Dorfman compared this to the anti-gay stigma around prostate and colon screenings, wherein heterosexual, cis gender men might avoid seeking out recommended screenings because “getting something put up my butt makes me gay”.

These stigmatizing attitudes and stereotyping are universal around “sexually charged preventative measures”; we see it when people are charged for solicitation as a prostitute because they carried condoms on them, around access to the morning after pill and abortion, and certainly we’ve seen these attitudes around the human papilloma virus vaccine. These attitudes are so pervasive that providers sometimes refuse to prescribe PrEP and, when they are, they may find themselves avoiding doing so for patients in their teens for fear of a parent acting out as a result.

While the Americans with Disability Act 9ADA) and related guidance and rulings have offered some protection for people living with HIV, those protections are not offered to people utilizing PrEP – but they could be, with some creative thinking, in part, because the ADA protects people from stereotypes related to an “assumed” disability. If a situation arose where PrEP use was specifically assumed to mean someone is likely to develop or already has an HIV diagnosis, the ADA protects patients from harmful stereotyping. But that would be extraordinarily specific. Instead of trying to make that stretch, Professor Dorfman thinks seeking out state or federal legislation which prohibits medical discrimination more broadly than disability status could be useful. Similarly, guidance and policies which apply a personalized assessment of risk, tied with scientifically accurate information may also be useful. For example, a personalized assessment in evaluating people for blood donation, rather than a categorical (though, now more limited) ban might create a sense of equity between potential donors and address some of the stigmatizing assumptions that come from the policy.

Professor Dorman has another, forthcoming paper, Penalizing Prevention, which includes case studies – one wherein a parent’s engagement with PrEP was one factor used against them in a child custody matter – that assesses how preventative care is adversely treated by various institutions.

Advocates should consider what it means to define “stigma” and evaluate what comes next. Such as, what are potential policy answers as well as identifying private, professional organizations with power to influence the persons exercising those biases as potential partners in addressing HIV stigma. Invested policymakers should consider a variety of ways, including legislation, regulatory guidance or rulemaking, and requirements attached to grants as a means of combating stigma and promoting a more robust public health landscape. Lastly, funders should consider what it means to have an active and effective strategy for addressing stigma beyond “education” - which of your grantees and partners are getting creative in changing our environment for good? More specifically defining stigma allows us to identify ways in which to address that stigma and make tangible improvements in people’s lives and we should not shy away from exploring these potentials.

Equity in Access: Hospital Price Transparency, Medical Debt, and 340B

As part of Community Access National Network’s (CANN) 2021 blog series, A Patient’s Guide to 340B, we published a piece detailing how the decline in charity care impacts patients after seeing a provider with a particular focus on practices around debt collection and medical debt. Since then, the Biden Administration issued a directive through federal agencies for credit reporting agencies to stop reporting medical debt on consumer credit reports. The idea was an effort to reduce the impact of medical debt in other areas of patients’ lives, like securing housing or employment. Emergencies and even routine care, say a pregnancy, can after all affect a person’s financial status for years after the fact and with the ballooning nature of medical debt affecting millions of Americans, something needed to be done to better protect patients. The Affordable Care Act (ACA), in general, sought to address the financial concerns of patients, particularly with regard to avoiding necessary care for fear of the financial repercussions. These moves by President Obama’s Democratic successor were relatively predictable.

The three largest credit reporting companies, Experian, Equifax, and TransUnion, agreed in 2022 to implement these rules…sorta.

The details of those agreements and how hospitals navigate “bad debt”, or when a patient can’t afford a bill, are stickier than the rules can address without legislation. Hospitals have their own internal teams to pressure patients to pay something, even when it comes at the expense of food on their tables or paying rent, and even when those same patients are entitled to financial assistance or charity care and shouldn’t be paying anything. But once that effort fails, hospitals and other medical providers can and do “charge off” those bad debts to credit collection companies and those claims can and will continue to show up on consumer credit reports. Advocates have been pushing the Internal Revenues Service (IRS) and other agencies to do more to protect patients and consumers. All of that is part of why Representative Tlaib (D – Michigan) has introduced a bill to prohibit medically necessary care from arriving on a patient’s credit report, among other rules and limitations on how providers, credit collectors, and credit reporting entities handle medical debt.

The proposed bill, however, does not address hospital practices in running credit reports in order for patients to qualify for financial assistance – which can result in a “ding” on a patient’s credit file.

Among other efforts to reduce costs related to medical care, the Biden Administration also implemented hospital and insurer price transparency rules, with the idea that transparency might drive down costs and encourage competition regarding common medical procedures. However, there is no central database of these services hosted by the government, rather these services are posted…somewhere on hospital websites. The problem is hospitals and insurers are really, really good at abusing process and not meeting the actual intent behind these efforts. The advocacy organization Patient Rights Advocate has recently released its analysis of hospital compliance with these rules and it’s not pretty. The Centers for Medicare and Medicaid Services (CMS) hasn’t issued rules for standardizing price data and the files for these data aren’t required to be presented in a consumer-friendly fashion. Further, these rules are required to provide the list and negotiated prices relevant to a consumer and do not address considerations like rebates or their impact on accessing care, nor are these lists required to provide information on how different charity care designs might help reduce the financial burden of these services.

So other than keeping our friends in advocacy and government well-employed by analyzing thousands of lines of data, these tools are proving to be of limited use for the average consumer. And none of that addresses what happens in emergency situations, where “choice” doesn’t exist – like when you need an ambulance or when there’s one or two hospital systems in a geographic area. All the price transparency in the world won’t address consolidation in providers.

Furthermore, a lack of transparency in 340B revenues for hospitals also means a lack of transparency as to how those dollars might be used to mitigate these consumer costs and potential harms when a patient can’t pay. Similarly, with hospitals and insurers pointing fingers at labor and pharmaceutical costs as to what’s driving a crisis of unaffordable care, transparency on actual costs to provide care and treatment would allow for a more meaningful analysis of who’s really in it for the money versus serving the health needs of patients and communities.

For their part, the American Hospital Association fought the transparency rules in court and lost. Their central argument in response to the loss was that these transparency rules took away from serving patients during the height of the COVID-19 pandemics strains on hospitals – but providers don’t crunch these data, administrative personnel do.

Rules standardizing patient cost data presentation, prohibitions on utilizing 340B revenues for consolidation, and anti-competitive practices would certainly be useful for ensuring patients feel secure in accessing care they need and protecting patients from predatory practices. And that security is critically important for patients and for addressing issues around health disparities.

The reality of the matter is providers do deserve to be paid for their work and commitment to their communities and no patient is going to meaningfully argue against that. But when patients find themselves avoiding necessary care because they’re trying to save or qualify for a home or dig themselves out of debt, that’s just plain bad for those patients, their families, their dependents and care givers, the economy, and, frankly, our trust in both government and providers. Health disparities cannot be meaningfully addressed across this country without addressing the financial incentives and disincentives that drive access to care, whether it be the rural hospital crisis or medical debt.

Increasing transparency is an excellent start. Advocates and policymakers should consider to continue to explore ways to protect patient trust by way of accountability in programs and payment processes which are supposed to be about protecting patients as consumers and increasing access to care.

Analysis: Biden’s Budget Request Emphasizes HIV, HCV Goals

On March 9th, President Joe Biden released his proposed budget. As with all Presidents, in all years, and in all sorts of political climates, it outlines what can generously be called a “wish list”. Rarely, even under unified control of the government, does a President’s budget request get a full match. Most often, the budget Congress passes and the budget a President proposes are dramatically different. In 2022 (and in decades past), Biden attributed a quote to his father: “Don’t tell me what you value. Show me your budget – and I’ll show you what you value.” To that end, Biden’s budget proposal has a few notable areas of interest with regard to HIV, hepatitis C, public health in general, and with regard to priorities that might affect various stakeholders along the chain from manufacturing medications to patients.

In a call to advocates, just prior to the full court press release of the President’s budget, White House staff touted a proposed expansion of the Inflation Reduction Act’s (IRA) drug price negotiation provisions to include more medications up for government control of list prices as part of a “savings” counterbalance to expenditures in the proposed budget. It’s important to note no specific medications have yet been proposed under the IRA, any proposed “savings” the government expects to see have not been tested, and, yet again, these potential “savings” are not required to be passed down to patients or even back to the government as a public sponsor of affected plans. Similarly, on the call, officials said the proposed budget would stop “subsidizing” pharmaceutical manufacturers and, immediately thereafter, stated a priority in the budget would be to incentivize innovation as part of the administration’s “Cancer Moonshot”.

There are several HIV-related provisions in the budget request as well. First up, the proposal seeks to expand funding for the Ending the HIV Epidemic initiative started under the previous administration by about $313 million. These dollars would be bolstered by a $90 million increase for HIV prevention activities at the Centers for Disease Control and Prevention (CDC) and a $15 million increase for associated CDC programming around pre-exposure prophylaxis (PrEP) for the prevention of HIV. Notably, these same funds are a portion of dollars Tennessee will be rejecting later this year. Right along with these increases, Biden’s budget seeks to increase Ryan White HIV/AIDS Program funding by $125 million in order to better ensure those already living with HIV have better access to care and treatment.

One of the crowning jewels of the request includes funding for a national PrEP program to the tune of $9.7 billion over 10 years. That particular request may get passed and have some funding, but it is not likely to be funded at this level…or anywhere near sufficiently to meet the need. As it stands, relatively few people who would benefit from PrEP are taking the medication and that number, based on preliminary data for 2022, might be falling again. Largely, PrEP is being used by white men who have sex with men, who are already highly activated, while fewer Black Women and Black men who have sex with men are accessing the medication. A national program may help on this front, but only if it’s handled correctly and carefully. To that end, the CDC has been making a concerted effort to urge primary care providers to adjust their comfort level with prescribing PrEP and having conversations with patients about their sexual activities.

The proposal, however, did not include an increase in funding for Housing Opportunities for People with AIDS (HOPWA), a particular priority of advocates.

Biden’s proposal also includes an increase in funding for the Indian Health Service to better address HIV and Hepatitis C by about $5 million.

In line with these efforts, the Administration unveiled the financial cost of a national Hepatitis Elimination Program (HEP): $11 billion (over 10 years). Now, effort has been in the works for a while, benefitting from a boost of interest from advisor Francis Collins. Biden’s team is already working hard blunt the shock of the request, arguing that making the investment now would, in that same timeframe, actually only amount to about $5.2 billion, thanks to savings realized by a reduction of costs associated with treating long-term impacts of Hepatitis C, including certain cancers. The program would aim to save 100,000 lives by 2050, if goals are achieved.

Of these ideas, HEP likely has the best chance of getting closer to its goal (though, not nearly as close as the Administration or advocates might like), in part, because the idea is largely modeled after cost savings realized in Louisiana and Washington after implementing a “subscription” model of drug purchasing for public programs. While these programs have indeed saved monies for those states, and would do so for the country at large, and increased the number of people accessing curative direct acting agents, they have also stagnated in reaching their goals. That lack of progress after making a giant leap can be attributed to several factors, of which both Ending the HIV Epidemic and a national Hepatitis Elimination Program will face.

Let’s break those factors down real quick by highlighting the Hepatitis C program, which focuses on medication cost and access among at-risk communities near exclusively.

A report from the CDC released last year found just 1 in 3 insured patients who need access to curative treatment for Hepatitis C received it. These are patients whose coverage is already guaranteed. Barriers included payer administrative burdens, including prior authorization requirements, and, likely most importantly, providers just not…providing; not screening, not referring patients for diagnostic testing, not prescribing curative medications for patients (hoping the virus will clear on its own), and not following up to ensure sustained virologic response. And that’s for well connected and engaged patients. Hepatitis C thrives among populations which are routinely hardly reached – people who use drugs, poorer populations, imprisoned people, persons experiencing homelessness, a whole host of folks who need a whole awful lot of help. While the Administration’s proposals would look at encouraging using local pharmacies as points of access and investing in innovative screening tools, like rapid tests, none of those things speak to identifying and treating people most affected by Hepatitis C and HIV. And none of those things would incentivize private providers to increase their frequency of screening for and treating Hepatitis C and HIV.

These lofty goals are admirable. And frankly, they’re achievable. We would also need these tools already mentioned, certainly. But without baseline investments in making HIV and Hepatitis C screening a standard of care, a mandatory inclusion in annual wellness checks, requiring prisons and jails to screen, report to state health departments, and provide curative care on both intake and release, without ensuring clinics are sufficiently funded to have staff to do street outreach, we’re gonna keep missing the mark. Reaching communities that are hardly reached means spending more money per patient in order to reach each patient, not less.

So yes, this is a great start. Yes, these investments need to be made. Yes, this is a great starting point. No, it’s not enough.

Advocates would be well-served to fine tune messaging that thanks allies in power for supporting these tools while also emphasizing that we haven’t yet used all of the tools still in our toolbox. We need to continually re-invest in the foundation of this work while also growing and innovating. Medication is but one tool and without the support for patients to even get to a provider who is willing to screen and treat them, all the medication in the world won’t help.

We need to invest in our own “Yes, and…show me your values…” as we meet with each other, our partners, law makers, policy makers, and the Administration.

A Pox in the Hen House: A Timeline of the MPV Outbreak and Topline Numbers

The first Monkeypox (MPV) diagnosis in the United States was reported on May 17th, 2022, though testing data indicate that the first test that returned a positive result was administered on May 10th. By July 3rd, 2022, there were over 1,500 reported cases in the United States.

By early July 2022, white Americans accounted for 47.6% of MPV diagnoses. But by July 24th, 2022, with 7,266 cumulative MPV diagnoses, Black Americans for the first time accounted for most positive diagnoses—32.6%—in the Centers for Disease Control and Prevention (CDC)’s Morbidity and Mortality Weekly Report (MMWR) Week 30. For all but 8 out of the following 28 weeks (ending in MMRW Week 5, 2023), Black Americans accounted for the highest percentage of positive test results. White Americans accounted for the majority of weekly positive diagnoses in only 7 weeks in that same period of time. On August 9th, 2022, the U.S. government declared MPV a Public Health Emergency (PHE). As of February 15th, 2023, there have been a total of 30,193 identified MPV diagnoses and 38 confirmed deaths as a result of MPV.

On May 22nd, 2022, the first JYNNEOS vaccines were administered as prophylaxis against MPV in the United States. Initial supplies of the MPV vaccine were low, however, and the U.S. Food and Drug Administration (FDA), to increase the available supply, issued an Emergency Use Authorization (EUA) on August 9th, 2022, allowing healthcare providers to administer the vaccine in a two-dose series using intradermal administration based on findings from a 2015 study that evaluated the efficacy of intradermal compared to subcutaneous vaccine administration. The total number of vaccines administered in a single week peaked in the week of August 7th – August 14th, 2022, with 108,895 total vaccines administered. By September 10th, 2022, the number of weekly second doses administered outstripped the number of first doses for the first time. This trend continued until the week ending on January 28th, 2023. The number of weekly vaccine administrations dropped precipitously in the week ending on October 1st, 2022. As of February 28th, 2023, a total of 1,196,047 doses of the MPV vaccine have been administered.

Access to and administration of the MPV JYNNEOS vaccine in the United States appear to have been highly correlated to race. In both First- and Second-Dose administration phases, white Americans were the most likely to be vaccinated, with 46.4% of first doses and 50.3% of second doses being administered to white Americans. White Americans received 47.9% of all vaccines administered. Despite the fact that Black Americans represented the highest percentage of diagnoses in the United States—33.7%—just 11.3% of first doses and 10.7% of second doses were administered to Black Americans, receiving just 11.1% of all vaccines administered. Among Hispanic Americans—who accounted for 29.6% of all MPV diagnoses in the United States.—just 20.7% of first doses, 19.6% of second doses, and 20.3% of total doses were administered to this population.

The first doses of TPOXX (tecovirimat) for the treatment of severe MPV disease were prescribed on May 28th, 2022. TPOXX administration is primarily reserved for patients with severe symptoms of the disease, who are immunocompromised, or who have other concurrent conditions that may present complications. As of January 25th, 2023, 6,832 patients were prescribed or treated with TPOXX.

On November 28th, 2022, the World Health Organization (WHO), to address racist and stigmatizing language associated with MPV recommended a global name change for the virus to “MPOX.” (Disclaimer: CANN continues to use “MPV” for its current project merely for the purpose of consistency in report language, but will begin using “MPOX” upon conclusion of the project)

On December 3rd, 2022, the U.S. government announced that it would not be renewing the PHE for MPV. The PHE officially expired on January 31st, 2023.

The Lessons We Applied, the Ones We Learned, and the Ones We Failed to Heed

One of the most successfully applied lessons was the implementation and utilization of existing testing, vaccination, and surveillance systems that were created in response to the COVID-19 outbreak.

Of the 57 reporting U.S. jurisdictions, 31 utilized their existing disease response, reporting, and tracking infrastructures to deploy in-depth disease MPV surveillance for the majority of the outbreak. The surveillance staff and protocols developed during the COVID-19 pandemic quickly pivoted to include MPV in their work, expanding their disease reporting and dashboards to include MPV case counts and demographics to better track the outbreak. Existing vaccine infrastructures including, but not limited to, staffing, scheduling systems, and drive-through delivery spots, were adapted, expanded, or repurposed to incorporate MPV vaccine supplies and dose administration.

Several jurisdictions truly set standards in their reporting, including the states of California, Colorado, Georgia, Kentucky, Massachusetts, Michigan, and New York City (which is reported separately from New York state). They provided excellent MPV diagnosis demographic breakdowns that included age groups, racial/ethnic minority categories, and gender reporting that included trans, non-binary, and other gender expression categories. These data helped to direct responses and better measure equitable outreach, education, and access to treatment and vaccines to the most affected communities.

To hear state and federal public health officials tell it, the U.S. response to the MPV outbreak has been a masterclass in how to effectively respond to and control an epidemic of a highly infectious disease. We’ve heard about how successful and swift the response to the outbreak was and, for a certain segment of the population, that may be true.

For many white, cisgender men who have sex with men (MSM), the outbreak has been little more than a month-long inconvenience; a blip that barely pinged their radars. The other side of that story, however, lies in the marginalized demographic groups.

For all of the successfully deployed public health systems, the truth is that MPV has been almost exclusively a disease that impacts the “others” in our society. From the beginning of the response, LGBTQ+ patients reported facing stigmatizing, discriminatory, and/or outright racist attitudes and behaviors on the part of medical professionals and administrative staff, particularly those seeking services outside of urban settings.

The unfortunate truth of healthcare provision is that every disease that is primarily acquired via sexual transmission comes with its own set of social, moral, and medical stigmata. In areas where self-reported levels of religiosity are high, patients seeking care often encounter negative behaviors and reactions from healthcare workers and administrative staff both inside and outside of the STD/STI/HIV spaces. While the Health Insurance Portability and Accountability Act (HIPAA) is supposed to protect patients, the reality on the ground is that healthcare workers can be woefully loose-lipped when it comes to sinking the social ships of the patients who live in small or close-knit communities. Moral judgments are made; stories get told; patients are admonished and made to feel ashamed—the impacts of these behaviors, both short- and long-term, can lead to patients refusing to seek testing or treatment until they feel they absolutely must, to avoid being honest with physicians about their symptoms, or to refuse to seek vaccinations or treatment services to help prevent infection or the further spread of the disease.

When it came to the delivery of MPV vaccines, the splitting of the JYNNEOS vaccine into two doses both created confusion about the efficacy of the vaccine and increased barriers to people wishing to complete the two-dose series. With any vaccine series, the fewer times patients need to schedule or show up for an appointment to receive their shots, the more likely they are to get fully vaccinated. Additionally, the decision to use intradermal vaccine administration as the delivery method—one of the more difficult delivery methods to correctly perform—resulted in reports of unsuccessful attempts at vaccinating individuals, particularly in patients with darker skin. Additional concerns, which were only marginally addressed by later guidance—and inconsistently applied across jurisdictions and providers—included discomfort and scarring, particularly among those prone to keloids. This meant that several patients—mostly Black and Brown—had to have their dose readministered at a later date creating yet another unnecessary barrier to becoming fully vaccinated.

Another factor that negatively impacted the MPV vaccine uptake was the exponential increase in self-reported hesitancy, skepticism, refusal, and beliefs in scientifically and factually inaccurate information about vaccines, in general. One of the worst consequences of the COVID-19 pandemic response was the massive influx of false information about how vaccines are developed and manufactured, what their contents are, their risks and side effects. Those challenges were compounded by misinformation, such as massive government/billionaire/Jewish/Chinese conspiracies to commit every farcical atrocity under the sun – including surreptitiously implanting microchips, giving people mutant magnetic properties, sterilization…you name it, some shadowy organization was allegedly doing it.

Despite these falsehoods being easily disproven within seconds, for many people the burden of proof has never been on the people making the false claims to prove their theories, but on the “experts” to disprove what the neighbor’s cousin’s sister’s oldest great-grand-nephew said about how the vaccine caused him to go blind.

Beyond those haphazardly manufactured and too easily consumed lies about vaccines, Black and Brown communities have historically legitimate reasons to distrust the government and medical authorities. Decades of actual and well-documented surreptitious sterilization, non-consensual experimentation, and abuse at the hands of systemically racist medical establishments have resulted in a generational and almost endemic distrust of public health measures, treatments, and authorities in minority communities. Efforts to combat generational hesitancy, avoidance, and distrust are slow-going, taking decades of work to undo or repair the harm that has been done to those communities. Add on top of that steady and relatively unchallenged social, digital, and visual media streams churning out anti-vax conspiracy theories, and that process becomes all the more difficult.

In Black and Hispanic men, as well as in communities of Persons Living With HIV/AIDS (PLWHA), MPV was largely allowed to run rampant, in no small part because of ineffective, lacking, or wholly absent educational, outreach, and vaccination strategies designed to reach those communities. While the work done by Drs. Demetre Daskalakis and David Holland in the Atlanta region and in a handful of other major cities was both highly effective and admirable, reality is that their campaign of taking education, testing, and vaccination drives into large-scale venues, gay cruises, fetish events, and sex clubs simply wasn’t scaled and replicated at the levels needed to truly reach those most in need of services.

One of the lessons that we need to learn from the MPV outbreak is that we need to do a much better job of delivering healthcare services outside of traditional settings and offering healthcare services outside of traditional office hours.

We already know that rural, minority, and LGBTQ+ populations face critical healthcare staffing and service provision shortfalls. The closure of rural clinics and hospitals, as well as healthcare providers who served primarily minority and/or lower-income patient populations, has exacerbated the negative outcomes and barriers that exist in areas with underfunded, little, or non-existent healthcare infrastructures. While the growth of COVID-19-related pop-up services and locations provided hope for improvement, the truth is that those investments were never designed to be long-term, nor were those investments or their implementation welcomed in more conservative parts of the country.

If we want to effectively serve underserved populations, we must think and act outside of the standalone brick-and-mortar healthcare paradigm. The MPV outbreak has shown us that we need to significantly increase local, state, and federal investments in mobile, pop-up, and telehealth healthcare delivery methods and models to meet people where they are. We also need to invest in more community-based providers, service models, and interventions. We need more public-private collaboration design – like the New York City Health Department partnering with the Sisters of Perpetual Indulgence for generating a community experiences feedback system.

Many of the most innovative and successful STD/STI/MPV interventions don’t require patients to come into a standard physical location to access testing, vaccination, and treatment services. They are set up in sex clubs and bars; they show up at concerts, parties, and other big events; they offer services in churches in communities where faith plays an important role in the lives of their patients; they build trust in, develop relationships with, and take mobile units into encampments of people experiencing homelessness. Essentially, they go out and meet patients where they are and when they’re available. A pox in the hen house has taught us one very valuable lesson: we need to fix these barriers sooner rather than later.

DEA Proposed Rules Risk Harming Access to Care

Since the beginning of the COVID-19 pandemic, the United States Drug Enforcement Administration (DEA) has held certain relaxed or waived rules regarding prescribing of controlled substances. On January 30th, President Biden announced his administration would end the public health emergency (PHE) declaration related to COVID-19 in May of 2023, after one, last renewal in February. Part of what’s being called an “unwinding” of the PHE includes returning to “normal” operations for executive entities like the DEA. But times have changed dramatically in terms of healthcare access since the beginning of the COVID-19 pandemic, most notably around the issue of telehealth. Thus, on February 24th, the DEA announced two proposed rules regarding permanent telehealth access and prescribing related to controlled substances.

The DEA’s controlled substances list is…controversial, to say the least. The five category list includes those which the agency has deemed to have the “potential for abuse or dependency” characterization. Schedule “V” (five) having a “low” potential for abuse relative to other levels and having sufficient medical value, resulting in quantity limits but, typically, not more than that in terms of regulatory impact. These medications include certain cough medicines and an anti-diarrheal medication, among others. Schedule “I” (one) substances as having been deemed to have “no” medicinal value, a high potential for abuse, and a lack of accepted safety for use even under medical supervision. These substances include marijuana, “ecstasy”, LSD, and peyote. In between these, you’ll find certain pain killers, treatment for attention deficit disorder (ADD), anabolic steroids, and medications used to treat opioid use disorder (OUD). The DEA’s proposed telehealth rules (here and here) would allow for a provider who has never conducted an in-person assessment of a patient to only prescribe up to a 30-day supply of schedule III-V non-narcotic medications and a 30-day supply of buprenorphine. In order to get a refill or maintain treatment, a patient would have to then arrange for an in-person assessment. For patients referred by a provider who has already conducted an in-person assessment in the last year or for providers who are directly prescribing the medication and have already had an in-person assessment in the last year, the limitations on telehealth would not apply.

Particularly, in the rules, the DEA argues medications used to treat OUD are at risk of diversion and misuse, despite evidence that misuse is relatively rare and declining and despite the fact that only about 11% of the population which could benefit from medication assisted treatment (MAT) have access, according to a report from the Substance Abuse and Mental Health Services Administration (SAMHSA). Reasons for limited access are slowly being addressed. Most notably, the “X-Waiver”, a program which limited which prescribers could offer buprenorphine and other MAT and how many patients they could treat. The “X-Waiver” requirements were repealed in Section 1262 of the Consolidated Appropriations Act of 2023 (otherwise known as the Omnibus). Another giant barrier to prescribing MAT is provider stigma. This stigma against people who use drugs (PWUD) often leads to patients having an exceptionally hard time finding a provider willing to help them, when they need it. Years of prescribing limits and the vagueness of the DEA requiring pharmacies to report “suspicious” orders (the DEA does not define what’s constitutes “suspicious”), has also left pharmacies, wholesalers, and distributors exceedingly cautious as not gaining the DEA’s ire. With these proposed rules, the biggest barrier to President Biden’s plan to expand access may be the bureaucracy he enabled as a Senator and Vice President (Politico details more here).

Additionally, some states are attempting to ban access to gender-affirming care; not just for minors but for anyone accessing public payer programs and even attempting to forbid private, commercial plans from offering gender affirming care. While these would not necessarily impact access to care for transgender women seeking out-of-state telehealth, it would adversely affect transgender men because testosterone is a schedule III controlled substance. Thus, under these rules, transgender men would have to have in-person assessment with a provider in order to begin or continue accessing prescribed testosterone replacement therapy. Where this is a bit of a “come uppins” moment for President Biden is in his historical record of championing the Anabolic Steroid Control Act of 2004, making testosterone and anything related to it a controlled substance. The law rose to a certain popularity because of major sports leagues in the United States insufficiently addressing steroid use among professional athletes. The world has changed greatly since then and most, if not all, of those entities have adopted tight controls and regular screenings of athletes (which do need some update to appropriately reflect the endocrinological variety the human species offers). A carve out in the law would allow for the DEA to exempt medications which “does not present any significant potential for abuse.”

Chronic pain patients, disability advocates, harm reduction advocates, and advocates for access to gender-affirming care are sufficiently outraged to see their life-saving care being ripped from the ease of telemedicine. Leo Beletsky, a law professor at Northwestern University said, “The fallout is going to be measured in lives lost.” Dr. Brian Hurley, the president-elect of the American Society of Addiction Medicine said, “I would posit that untreated opioid use disorder is a bigger threat to public safety currently than the risk of diversion.” “forcing people with disabilities who are immunocompromised or high-risk to choose between potential COVID exposure and forgoing vital medications is ableist and dangerous,” said Madeline T. Morcelle of the National Health Law Program. Adult ADHD patients are already fighting a shortage on their medications and providers who will prescribe them. And with the rural health care crisis limiting access to providers for queer people, disabled people, and PWUD, this rule will strip them of the only time they’ve seen their access to care expand in decades.

A bi-partisan, bi-cameral group of legislators have written a letter to the DEA cautioning against these rules and Senators Warren (D-MA) and Ed Markey (D-MA) have also written a letter to the U.S. Department of Justice, U.S. Department of Health and Human Services, and the DEA about de-scheduling testosterone. Neither letter has been answered yet. Orion Rummler of 19th News recently asked for an update and will be following up on the status of a response from the Biden Administration and executive agencies.

With these massive concerns on finding and accessing care, patients may well turn to the black market or grey market to self-manage the life-saving medications they need. This not only defeats the purpose of the DEA’s rules in attempting to prevent diverse by artificially creating a market for illicit trade, it exposes patients to risks of infections, counterfeit medications, and other safety hazards.

Patients should not have to risk their lives and even incarceration in order to access life-saving medications they have readily enjoyed over the last three years. The DEA should engage providers, advocates, and patients more than any other stakeholder from law enforcement to approach promulgation of these rules in a way that aligns with public health instead of carelessly chasing after ways to limit access to life-saving medications.

The proposed rules aim to come into effect in November. The public comment period ends on March 31, 2023. We encourage our partners, including those not directly involved in issues of substance use or production of controlled substances, to comment in support of adjustments to the proposed rules that would maintain telehealth access to care, meet the stated public health goals of the Biden Administration, and, most directly, maintain access to the life-saving medications patients depend upon. The public may submit comments here and here.

Hepatitis C Medicaid Access Dashboard Provides 2023 Updates

In February, the Hepatitis C State of Medicaid Access project, operated by the Center for Health Law and Policy Innovation of Harvard Law School (CHLPI) and the National Viral Hepatitis Roundtable (NVHR), updated snapshot of the variety of restrictions and barriers to care prevalent in state Medicaid programs regarding accessing life-saving Hepatitis C (HCV) treatment. The project has been working to expand access to HCV treatment since 2014 and is a ready tool of state advocates seeking to end discriminatory program policies.

Last year, the project updated the monitored metrics to adjust to successes in advocating for policy and program changes but to also begin monitoring new ways programs are finding to restrict access to and coverage of care. Evidenced by the 2021 snapshot report citing changes since 2017, including 32 states having eliminated or reduced fibrosis restrictions, 21 states having loosened sobriety restrictions, and 25 states having scaled back provider restrictions, the 2022 report began tracking retreatment restrictions, disparities between fee-for-service (FFS) access and managed care organizations (MCOs) access policies, and “additional restrictions” including time-based lab requirements, past adherence to other prescription medications, and policies which prohibit replacement of lost or stolen medication. Restrictions not tracked yet but may be in the future include monthly prescribing limits and specialty pharmacy requirements.

The 2023 update notes that since 2022, seven states removed prior authorization requirements for most patients, no changes in fibrosis restrictions (with Arkansas and South Dakota being the only states remaining with this policy), six states having removed substance use restrictions, one state (Nevada) having removed prescriber restrictions, three states removing re-treatment restrictions, and, cumulatively, three more states have addressed disparities in FFS and MCO access to HCV treatment. Similarly, the 2023 snapshot also includes some nuanced updates with regard to prescriber restrictions, now noting a lack of restrictions for a “simplified” or “initial” treatment offering in Hawaii, Kansas, Kentucky, Utah, and West Virginia. Additionally, the FFS versus MCO access portion introduced layers of understanding, segregating out states which do not use MCOs from the overall graphic. While Colorado, Ohio, New York, and West Virginia addressed the issue of additional restrictions or a lack of transparency, Texas took a step backwards and found itself being added to the list of states with a lack of clarity and additional MCO restrictions on HCV care. One hallmark metric of the project also received a “facelift” by introducing a “grading” system for each state’s prior authorization policies, ranking from “A+” to “F”; 9 states received an A+ for having no prior authorization requirement for most patients, 12 states received an A for having removed prior authorization requirements for most patients and having minimal restrictions, 11 states received a B for removing prior authorization requirements for most patients with some restrictions, 12 states received a C for requiring all patients to obtain prior authorization though having few restrictions on accessing care, 6 states received a D for requiring prior authorizations for all patients with “many restrictions”, and 2 states received an F due to requiring all patients to obtain prior authorization and having “harsh” restrictions.

The snapshot and grade systems have proven to be extraordinary tools in targeting advocacy, including litigation, to improve access to curative HCV treatment for Medicaid patients. Recognizing access to care is not granted, even in public payer programs, also allows advocates and policymakers to make more conscious policy decisions and empower practical programmatic design aimed toward benefiting highly affected communities.

Areas of additional support are necessary as payer policy is but one barrier to care. Advocates can and should seek changes which address provider discrimination, incentivize screening by way of establishing HCV screening as a standard of care or otherwise covered in a state’s “essential health benefit” design, and encouraging policymakers to address disparities in screening and treatment in carceral settings. Addressing HCV in carceral settings might start by requiring state prisons and local jails to report these metrics to state health departments on a regular basis, rather than hiding data behind jail systems which require and are often slow to respond to public records requests.

Much work remains and we’re ever grateful to our friends over at CHLPI and NVHR for their astounding work.

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.