The Recipe for Change: From Surviving Appointments to Changing Policy

For a long time, I thought advocacy meant surviving the next appointment.

I thought it meant learning how to explain my pain better, how to prepare for another referral visit, how to justify why I was missing work, school, or pieces of my life to something I didn't even understand for so long, while it was reduced to just part of "being a woman." Like many patients with endometriosis, I spent years fighting to be believed before I ever understood how much of that fight was never actually about me — it was about the system itself. That realization changed everything.

Endometriosis is often treated like an isolated women's reproductive issue, but it is one of the clearest examples of systemic failure in the 21st century. Delayed diagnosis, insurance denials, medical gaslighting, lack of ADA recognition, and repeated surgical barriers are not separate problems. They are connected outcomes of the same design failure.

Cases like Virginia OBGYN Dr. Perwaiz from 2021, who was sentenced for needlessly operating on dozens of women, are often discussed as individual scandals. However, they reveal something much larger — when patients are repeatedly dismissed, overtreated, undertreated, or financially trapped, we are not looking at exceptions. We are looking at a pattern. That pattern is expensive.

In the United States alone, endometriosis carries an estimated annual economic burden of $69 to $86 billion. Patients lose an average of 11 hours of productivity every week, with more than six hours from workplace productivity and nearly five from household responsibilities. That means reduced income, missed promotions, family strain, disability use, and careers reshaped by a disease that many providers still misunderstand. Endometriosis does not just take time away from work. It takes time away from living. That is where policy enters, and that is the part most people do not realize.

Congress may not perform surgery, but Congress influences whether research gets funded. NIH shapes how the disease is defined and studied. HHS drives oversight and accountability. CMS determines reimbursement structures that decide whether trained specialists can remain accessible. CPT coding through the AMA shapes how complex excision surgery is valued. FDA pathways matter when diagnostics and treatment development are still being built on outdated definitions. Then we have ACOG, which is responsible for surgical and treatment guidelines.

This is where advocacy becomes a civics lesson.

Through the American End of Endo Project, we teach people that advocacy means understanding where decisions are made and how to plug in. Our advocacy workshop says it best — advocacy means knowing who is in the kitchen, what they are cooking, and where you can add your ingredients to make the biggest impact. We walk patients through the three branches of government, how a bill becomes law, how appropriations language works, and why constituents matter. We show them how to find their lawmakers, identify committee assignments, understand representative priorities, and make a clear, direct ask. We also share how to use their lived experience to tie it all together.

Most people assume policy work belongs to lobbyists or large organizations. But some of the most meaningful movements happen because ordinary patients decide to keep showing up.

This past year, our AEEP "Oceans 4" team worked together to help contribute to federal appropriations language recognizing endometriosis as a chronic, systemic, inflammatory disease — not simply a reproductive disorder. That language encourages the NIH to use an updated, evidence-based definition aligned with current scientific understanding and to move research away from outdated narratives that have harmed patients for decades. No lobbyists. No big corporate backing. Just lived experience, and persistence. That is exactly what it was.

What looks like one paragraph in federal report language was actually months of calls, follow-ups, research, relationship-building, and learning how to communicate inside rooms never built for patient voices. It meant learning which offices mattered, which committee staff shaped decisions, and how appropriations in one place could springboard conversations with HHS, CMS, and broader federal accountability. That is the unique part of this process.

People often ask how I keep all the moving parts straight, and honestly, the answer is that advocacy becomes less overwhelming when you stop seeing it as random and start seeing it as systems working together, like a giant machine. One meeting leads to another. One appropriations request opens a door to reimbursement reform. One state conversation on PBM transparency connects to broader affordability reform. One workshop creates ten new advocates who now know how to speak to their own legislators. That ripple effect matters.

I saw this clearly during roundtable discussions on PBM transparency and patient affordability this March in Denver. Conversations focused heavily on cost, but I brought in the nuance that patients are still being prescribed treatments based on outdated and even falsified data. Too many people are pushed into repeated hormonal suppression, unnecessary hysterectomies, or endless "band-aid" medication cycles because the healthcare system has not caught up to the evidence. The response in the room was simple — things just need to catch up.

Patients do not live in policy timelines. They live in bodies that are expected to function a certain way.

When a six-hour excision surgery performed by a highly trained specialist is reimbursed similarly to a short procedure done by someone without disease-specific training, that is a structural failure. When insurance companies refuse to recognize surgical complexity, patients are forced into out-of-network care, massive financial loss, or dangerous delays. That is why CMS billing reform and CPT coding reforms matter so much. This is also why the battle is not won and has really just begun.

The appropriations language created a foundation, but there is still work ahead — CMS and CPT coding reform, continued HHS collaboration, FDA pathways for diagnostics and treatment development, and broader agency engagement across the federal landscape. We now have abbreviated agencies mapped and active areas of action to pursue. Genuine collaboration creates movement. That is what success looks like in advocacy. Not a single victory, but a structure being built.

For me, the shift happened when I stopped asking, "How do I survive this appointment?" and started asking, "Who controls the system creating this outcome?"

That changed everything.

Sometimes advocacy looks like legislation. Sometimes it looks like a congressional workbook with references. Sometimes it looks like a workshop teaching Civics 101 to patients who never realized they belonged in those rooms. Because they do.

Real change happens when communities rise up. Every story told, every meeting held, and every voice added creates pressure that systems cannot ignore. Endometriosis is not a niche issue. It is a public health issue, an economic issue, and a human issue. It certainly constitutes a public health crisis at this time.

Once patients understand where they can add their seasonings to the ribeye steak to make the most impact — everything starts to change.

Building Stronger Communities, Together: Reflections from Our Patient Affordability Roundtable

Editor's Note: This article was originally published on April 10, 2026, by Lupus Colorado and is republished here with permission. The Patient Affordability Roundtable discussed in this piece was hosted in partnership with Community Access National Network. Lupus Colorado, led by CEO Kristy Kibler, works to improve the lives of people affected by lupus through advocacy, education, and support services across Colorado. Their work on patient affordability, community building, and state-level policy advocacy strengthens the broader chronic disease patient community that CANN serves. To learn more about Lupus Colorado or donate to support their work, visit LupusColorado.org.

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Patient advocates and community organization leaders from across the country convene at the Patient Affordability Roundtable, hosted by Lupus Colorado in partnership with Community Access National Network.

At Lupus Colorado, we know that real progress happens when people come together, share openly, and commit to lifting one another up. That spirit was fully alive at our recent Patient Affordability Roundtable, hosted in partnership with Community Access National Network. This gathering brought together a powerful group of advocates and organizations, including End of Endo Project, Mamas Facing Forward, Chronically Informed, ACT NOW, CF United, Chronic Care Collaborative, Michigan Lupus Foundation, National Bleeding Disorders Foundation- CO and Colorado Patients Taking Action.

Centering Community as a Strategy

One of the most meaningful threads throughout the roundtable was a deep and intentional conversation about community building, not just as a value, but as a strategy for change.

We had the opportunity to dig deeper into what it truly takes to build and sustain a strong, effective community. At Lupus Colorado, we see every day that investing in people drives lasting change. Our ongoing collaboration with partners like ACT NOW, CF United, and Chronic Care Collaborative reflects a shared commitment to trust, connection, and leadership that strengthens the entire ecosystem. When we intentionally support one another and follow through on that investment, individuals step forward not just to participate, but to lead, advocate, and create meaningful change for their communities.

That insight carried throughout the conversation. Community is not built overnight. It is cultivated through consistency, care, and a willingness to grow together.

A Deeper Look at Affordability and Who It Impacts

Building on that foundation, the group explored one of the most important questions in our work: how we define affordability.

Too often, systems are designed around averages, what works for a typical patient. But in our communities, especially among those living with complex, chronic conditions like lupus, there is no such thing as typical.

We discussed the distinction between common and complex patient experiences and how policies that appear effective on paper can fall short when applied to real lives. This conversation reinforced a shared understanding that affordability must reflect lived experience, not simplified models.

Learning Across State Lines

These conversations naturally expanded into a broader exchange of ideas across states.

While each state operates within its own policy landscape, many of the challenges we face are deeply aligned. From patient protections to reimbursement policy and affordability frameworks, participants shared both barriers and promising approaches.

There is real momentum in learning from one another. Every insight shared strengthens our collective ability to advocate more effectively and to bring forward solutions that are grounded in both policy and lived experience.

Policy Conversations That Matter

With that shared understanding, the roundtable created space for focused, solutions-oriented policy discussion.

We explored key issues including PDAB reform, concerns related to QALYs, PBM loopholes, and fiduciary responsibility, along with the importance of rebate pass through, stronger patient protections, and oversight of Alternative Funding Programs to ensure patients are not unintentionally burdened. The conversation also emphasized the importance of building informed legislative champions who can advance patient-centered solutions.

Honoring the Patient Voice

Equally important was an honest conversation about the human side of advocacy.

For many individuals, participating in the legislative process means revisiting deeply personal experiences. We acknowledged the reality of re-traumatization and the responsibility we share to create spaces that are not only impactful, but also supportive.

Advocacy should empower, not exhaust. As a community, we are committed to elevating patient voices in ways that also protect and support those who share their stories.

Moving Forward, Together

What emerged from this convening was more than a list of challenges. It was a shared sense of direction and a renewed commitment to working together.

We move forward with stronger relationships, new ideas, and deeper alignment around how to create meaningful change. By continuing to invest in our community, elevate patient voices, and collaborate with partners across the country, we are building a future where access, affordability, and dignity are not aspirations, but expectations.

Together, we are shaping systems that work better, care deeper, and reach further. And that is where real progress begins.

The Story of Us: How Celebrity Voices Have Shaped HIV Advocacy for Four Decades

On April 1, Taylor Swift dropped a surprise music video for her song "Elizabeth Taylor," directing streaming royalties to the Elizabeth Taylor AIDS Foundation (ETAF). Two weeks earlier, on March 18, stars from six Real Housewives franchises descended on Capitol Hill to press lawmakers on the thousands of Americans at risk of losing access to HIV medications. Three days before that, the Elton John AIDS Foundation's (EJAF) annual Oscar viewing party raised $10.6 million for the fight against HIV. And last week, Time reports that Ciara has re-recorded her hit "1, 2 Step" for Gilead's "One2PrEP" campaign to raise awareness about pre-exposure prophylaxis (PrEP), including a twice-yearly injectable that reduces the risk of HIV by 96% to 100%.

That is a lot of celebrity firepower pointed at HIV in a very short window. And the timing matters, because the policy ground beneath people living with HIV is shifting fast.

According to KFF data cited by The 19th, 18 states plus Washington, D.C. have already cut AIDS Drug Assistance Programs (ADAPs), and 12 more are weighing further reductions. Federal funding for these programs has remained flat since 2014. Florida has slashed ADAP eligibility from 400% to 130% of the federal poverty level, a move expected to cut more than 10,000 people from the program. The state also plans to stop covering Biktarvy, the most widely prescribed antiretroviral medication in the country. Medicaid cuts signed into law have compounded the pressure: roughly 4 in 10 people living with HIV rely on Medicaid. And as Lindsey Dawson, director of LGBTQ health policy at KFF, told The 19th: drugs have gotten more expensive, more people living with HIV are relying on Ryan White, and the funding has not kept pace.

So when NeNe Leakes, Erika Jayne, Phaedra Parks, Melissa Gorga, Candiace Dillard Bassett, Marysol Patton, and Luann de Lesseps show up to Washington to talk about PrEP access and ADAP cuts alongside lawmakers including Senators Tammy Baldwin and Cory Booker, that is a megaphone being handed to a message that desperately needs one. Dillard Bassett, who worked in the White House during the Obama administration, put the stakes plainly: "The science to end HIV already exists." The challenge, she said, is making sure everyone has access.

Some voices in the advocacy community have grumbled about celebrity involvement in HIV work. The criticism is familiar: they could do more, say more, give more. Maybe. But this critique has a short memory, and the historical record is worth revisiting.

The Blueprint

In the summer of 1985, Elizabeth Taylor was trying to organize the first major celebrity AIDS fundraiser in Hollywood. Studio heads who had profited millions from her films refused to take her calls. Friends declined invitations. As Taylor biographer Kate Andersen Brower has documented, Taylor was told repeatedly to stay away. The industry was, in Taylor's own words, "turning its back on what it considered a gay disease." She would later recall the moment of resolve: "I finally thought to myself, Bitch, do something yourself."

The thing that changed the calculation was Rock Hudson's public AIDS diagnosis in July 1985. His disclosure mobilized Hollywood and forced the Commitment to Life dinner to move to a larger ballroom. The event raised $1.3 million for AIDS Project Los Angeles. Within two months of Hudson's announcement, Congress approved a significant increase in AIDS research funding. And President Reagan, who had mentioned AIDS publicly for the first time only two days before that dinner, did not deliver a formal address on the crisis until May 1987.

Taylor went on to co-found the American Foundation for AIDS Research (amfAR) in 1985 and establish ETAF in 1991, a foundation structured so that 100% of every donation goes directly to the cause. She testified before Congress three times in support of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. Over the last 25 years of her life, she is credited with raising over $100 million for HIV/AIDS-related causes. As researchers Noland, Goodale, Marshall, and Schlecht documented in their 2009 study in the Journal of Health & Mass Communication, Taylor emerged as "the leading celebrity voice and arguably the dominant HIV advocate at a time when there was a political vacuum in HIV leadership."

She did not fill that vacuum alone. Magic Johnson's 1991 disclosure that he was HIV-positive generated 259 AIDS-focused news stories in a single week and caused calls to AIDS hotlines to more than double overnight. As a heterosexual African-American athlete, Johnson broadened the public's understanding of who HIV affects. The red ribbon debuted at the 1991 Tony Awards as a symbol of solidarity, driven by the theater community that had been devastated by the epidemic. Princess Diana's 1987 handshake with an AIDS patient, without gloves, challenged the panic around casual contact at a time when hospital workers were leaving meals outside patients' doors. Elton John, who has said he should have died in the 1980s alongside friends like Freddie Mercury and Rock Hudson, founded EJAF in 1992. The foundation has since raised more than $650 million across 3,100 projects in 102 countries.

Why This Pattern Holds

The data on celebrity impact in HIV awareness is clear. When Charlie Sheen publicly spoke about his HIV status in 2015, the American Psychological Association documented a 265% increase in HIV-related news coverage and 1.25 million searches for HIV, condoms, testing, and symptoms on the same day. As Noland et al. concluded in their generational analysis: celebrities serve as "vehicles and embodiments of concern that act as proxies for their various audiences" and "maintain the primacy of a crucial issue in otherwise fickle media and political spheres."

Ronald Bayer, an expert on AIDS history at the Columbia University Mailman School of Public Health, has also been careful to note that celebrity advocacy has always been a complement to grassroots work, not a substitute. The activists built the movement. The celebrities amplified it to audiences that grassroots organizing alone could not reach.

That dynamic is playing out again right now. The "Housewives on the Hill" event, organized by MISTR, a telemedicine PrEP provider, put cameras and reporters in rooms where lawmakers were hearing directly about the ADAP crisis. Marysol Patton, an original cast member of The Real Housewives of Miami, connected the policy to its human cost in her home state: "When programs like ADAP are weakened, working-class people can't access this treatment." Florida ranks third in the nation for HIV diagnoses.

At the EJAF Oscar viewing party, Sheryl Lee Ralph, a producer on the documentary anthology Unexpected about Black women living with HIV, told Variety that upticks in diagnoses among women of color across the South demand attention, and that many women still have no idea PrEP is available to them. Women accounted for 1 in 5 new HIV diagnoses in the United States in 2022, and new diagnoses occur disproportionately among Black women.

As Fran Drescher put it at the same event: "If you have celebrity and you have social reach, if you don't use it, you're wasting it."

Something Worth Sitting With

We spend a lot of time in this space covering threats: funding cuts, Medicaid erosion, the hollowing out of public health infrastructure. Those fights are real and they are ongoing. But in the span of three weeks this spring, a cross-section of famous people used their platforms to put HIV back in front of millions of people who may not read policy briefs or follow ADAP eligibility changes. They directed money to organizations doing direct-service work. They sat in rooms with lawmakers and talked about PrEP access and Ryan White funding.

Could they do more? Sure. That question applies to all of us. But Elizabeth Taylor started this work in 1985 by simply refusing to be silent when silence was the norm. Forty-one years later, that same impulse is still producing results. The science to end HIV exists. The tools, from antiretroviral therapy to twice-yearly PrEP injections, are here. What we need now is the political will and public attention to make access universal. And any platform, any voice, any audience willing to carry that message forward is one we should welcome.

World AIDS Day: The Resistance of Resilience

Every year since 1988 people around the planet come together on the first of December to recognize World AIDS Day. In years past we have taken pause to honor those whom we have lost and celebrate the progress made in the global HIV response.

In 2025, it is nearly impossible to focus on anything but the challenges that threaten to unravel that progress. It arrives at a time of shifting political winds, renewed debates about public health funding, and increasing threats to the systems and supports that people living with HIV rely on every day.

Yet if there is one constant in the HIV movement, it is resilience.

For more than four decades, the HIV community has endured cycles of crisis and recovery. We have faced indifference, stigma, scarcity, and political backlash. And still—through mutual aid, activism, and unshakeable hope—we have rebuilt again and again. This year, with potential federal and state cuts on the horizon, that resilience is not just inspiring, it is essential.

At this moment, the United States stands at a crossroads.

For more than 20 years, the President’s Emergency Plan for AIDS Relief (PEPFAR) has been one of the most successful global health initiatives in history. It has saved an estimated 25 million lives, strengthened fragile health systems, and brought the world closer than ever to controlling the HIV epidemic. USAID has been central to this effort—building clinical capacity, partnering with community-led organizations, expanding access to prevention, and ensuring that millions stay connected to lifesaving treatment.

The current political divide, funding uncertainty, and stalled reauthorization efforts have created a dangerous vacuum. PEPFAR-supported clinics have reported staffing gaps, reduced community outreach, disruptions in treatment continuity, and delays in expanding services to key populations. These cracks—if allowed to widen—threaten decades of hard-won progress.

The message is clear: Treatment access is not guaranteed. Progress is reversible. Lives are at stake.

The uncertainty about the future of our movement does not end outside of the borders of this country. Here, at home, the dismantling of the foundations we have built our successes upon resembles the current state of the east wing. 

Policy decisions made in statehouses and on Capitol Hill have life-or-death consequences. Reductions to HIV prevention, care, housing, and treatment programs don’t simply trim budgets; they unravel the fragile ecosystems that keep people alive. Cuts disproportionately impact Black, Brown, LGBTQ+, and rural communities—people who already face higher barriers to care and greater exposure to stigma.

But we have never waited for political permission to do what is needed.

History shows us that progress in HIV policy is rarely linear. Budgets rise, then fall, with the optional attention of charity. Political champions emerge, then fade with the regularity opportunism offers. But the HIV response moves forward because the community keeps pushing forward. When lawmakers scale back, communities scale up. We see advocates testifying at hearings, organizations expanding peer-led services, and networks of people living with HIV stepping into leadership. We see researchers, healthcare providers, and activists working together to protect progress that took decades to build. 

This ability to adapt—to find new paths when old ones are blocked—is one of our greatest strengths.

When the early epidemic was met with silence, people living with HIV built their own networks of care. When treatments were inaccessible, advocates demanded—and won—more equitable access. When global leadership faltered, activists and partner nations strengthened PEPFAR and the Global Fund, saving millions of lives. When stigma has surged, communities have countered it with truth, visibility, and love.

This year’s uncertainties are not new terrain. The community has always been its own engine of progress.

Every political cycle brings the chance for renewed commitments…renewed inspiration. Funding threats today can become new opportunities tomorrow—but only if we keep momentum alive.

World AIDS Day reminds us, even during challenging times, that we must steadfastly defend the essential programs that provide medications, testing, prevention, housing, and supportive services. Once an HIV safety net is compromised, rebuilding it becomes multitudes more costly and emotionally taxing.

It also calls us to elevate the voices of those communities that are most impacted.  Resilience as it is strongest when those most impacted are centered. Policies crafted with meaningful, empowered involvement from people living with HIV are more equitable, more effective, and more enduring.

Finally it calls us to believe that hard times are temporary. When leadership changes—or when public health once again becomes a national priority—the HIV community will be ready with solutions, partnerships, and a long-term vision rooted in justice.

Resilience is not passive. It is planning, persistence, and refusing to let setbacks define the future.

The progress we’ve made— undetectable becoming untransmittable, vastly improved treatments, longer and healthier lives—is too valuable to lose. The HIV community, and its allies aren’t asking for miracles. We are demanding what we have always deserved: dignity, care, evidence-based policy, and sustained investment in human life.

On this World AIDS Day, we honor the fortitude that carried us this far, and we recommit to the work ahead. No matter how the political winds blow, we will continue fighting for a world where every person living with HIV has the access, resources, respect, and rights they need to thrive.

I urge you to take a moment and remember who we are, because the resilience to rebuild is not just our story—it is our most valuable strategy.

I Didn’t Plan for Advocacy or Gratitude, Yet Here They Are

Thanksgiving has always been a bit of a mixed bag for me, not in a tragic or dramatic way, but in that specific way you get when you grow up loving the holiday and growing up in the church. I’ve always enjoyed the food, the chaos, the family, the ritual of it all. But the season also came with this subtle expectation to perform gratitude, like the “giving thanks” moment could quietly morph into a post–Bible study prayer circle if you weren’t careful. Not disingenuous, just… a little showier than felt right to me and Jesus. And maybe that’s why, as I look back now, I’ve realized nothing about the road that brought me into advocacy is neat, polished, or suitable for a holiday centerpiece. It’s messy. Imperfect. Deeply human.

If I trace the line back to where it all began, the ink is more Rorschach blot than paint-by-numbers. I didn’t grow up dreaming of writing about HIV policy or public health or anything remotely adult and sensible. I grew up absorbing the quiet and not-so-quiet messages that who I was needed correcting. And to be fair, I didn’t just sit there and take it. I came out of the closet young for the time, ran headfirst into freedom, and made choices that would make Freud say, “see what I mean?”

But those early church scripts are stubborn. They cling like glitter after vacation Bible school. So in my twenties I did what far too many queer kids raised in pews eventually do: I marched myself right back into the sanctuary and tried to pray myself straight. Ten years of shrinking, contorting, and spiritual self-flagellation in the name of being “acceptable.” When I finally came up for air, gasping and blinking, trying to remember what it was like to breathe again, the universe had a plot twist waiting for me.

“Sir, your test results are in. We need to see you in our office.” The nice lady from the Wake County Health Department had no idea I’d been laid off from my job the day before, that her timing would land like a comedic beat in a very dark sitcom. Better get that COBRA coverage, hunny. In reality, the voice I heard when I was diagnosed with HIV in 2013 wasn’t the clinician’s. It was the church. “See, [insert slur]? You deserved this.” Not God. Not my mother. Not anyone who actually loved me. Just that old, well-worn shame cassette clicking into place like it had been waiting years for its solo. Shame doesn’t need facts. It doesn’t need context. It just needs a crack in the door. It can take a moment of pure biology and twist it into prophecy.

I wish I could say I rose to the occasion right away, but life isn’t linear or cinematic. There was no orchestral swell, no title card reading The Turning Point. The years after my diagnosis were a blur of contradictions. Some spiraling, yes, but also a lot of functioning. A lot of over-functioning, honestly. Working nonstop. Achieving. Pouring every unresolved fragment of identity and trauma into my career like it was mortar holding me together. I got married. I excelled. I tried to be “good enough,” whatever that meant. Worthy. Whole. Not broken. Oh, the stigma of it all. Oh, the pain we carry.

So when COVID hit and work evaporated overnight, it wasn’t just a job loss. It was an identity collapse. The marriage, which had long been more about me playing savior than building a partnership, blew apart next. Everything I’d built in the name of being acceptable crumbled at once. And when I let a man put a needle in my arm for the first time, it wasn’t rebellion or thrill-seeking. It was because I genuinely believed I had nothing left to live for.

And then, because life is bizarre and occasionally merciful, I met Jen. You may know him as CANN’s CEO. I knew him first as “Jen,” the guy I met through a mutual friend at a time when I wasn’t exactly giving “promising candidate” energy. Somehow, in the middle of my scrambled-brain era, he saw something I had long since stopped recognizing. He believed in me when I didn’t trust my own wiring.

So when he asked me to write for CANN in September 2023, it wasn’t about being rescued. It was about being reminded. There was still something in me worth tapping into. Something I’d buried but not lost. Even through the fog, I could feel it: I wasn’t finished. Not by a long shot.

And then I looked around at the moment I was walking into and thought: You’ve got to be kidding me.

Public health under political attack. HIV programs being destabilized and dismantled. Cuts that would undo decades of progress. LGBTQ+ people being treated like legislative piñatas. Clinics forced to scale back services while they wait for grants that used to arrive on time. Providers trying to keep people in care while the system beneath them is being quietly hollowed out. Everyone exhausted, angry, anxious.

This is when I show up? Now? When everything is on fire?

A hell of a time to get into advocacy.

But maybe that’s the point. You don’t get to choose the moment you’re needed. You only get to decide whether you’re going to show up, shaky knees, frayed edges, all of it.

My gratitude this Thanksgiving won’t be found on a Pinterest board. It’s not arranged on a charcuterie board with rosemary sprigs. It’s the gritty kind, the kind that comes from knowing how close I came to disappearing. The kind born from surviving things I absolutely should not have survived. I didn’t get here because I was virtuous or inspiring. I got here because people threw me ropes when I was sinking, and because I had access so many people don’t. Access to meds, to care, to community, to plain dumb luck. Privilege wrapped in trauma wrapped in stubborn persistence. I think about that every day.

That’s why the work isn’t abstract to me. When I write about funding cuts or bureaucratic sabotage, I’m not theorizing. I know what it feels like when systems fail. I know how shame can warp a diagnosis into a death sentence. I know what happens when care depends on luck, or geography.

And this work, as infuriating as it is, lets me fight back. For myself. For my people. For the folks who didn’t get the lifelines I did, who missed the right friend or the right doctor or the right skin tone. I get to push against systems built to confuse and exhaust people. I get to challenge the ridiculous fiction that some lives deserve less and that some people are worth more.

And strangely, I’m even grateful that advocacy requires actual humanity. Not rage-tweet humanity. Real humanity. The kind that asks you to hold onto your heart even when you’d rather slam a door. It’s easy to fight enemies. It’s harder, and far more necessary, to fight for justice while refusing to lose yourself.

Hope feels irresponsible these days. Believing in institutions feels like bad budgeting. But here I am. Here we are. Somehow still choosing to show up.

I’m grateful, not neatly, not saintly, but honestly.

Grateful to still be alive.

Grateful to have crawled out of the wreckage and found something worth rebuilding.

Grateful for every rope thrown my way, even the ones I didn’t think I deserved.

Grateful that CANN took a chance on me, the recovering, rewiring, not-exactly-LinkedIn-ready version of me, and said, “Yeah, this guy has something worth hearing.”

Grateful that I get to use every broken, complicated, hard-won piece of my story to help someone else carry theirs.

And I’m grateful, truly, that I get to show up in this exact moment, look around at the mess, and still say: I’m here. I’m ready. Let’s fight.

How Pharma Can Turn Advocates Into Allies

Governor Ned Lamont's recent visit to ViiV Healthcare's Branford research facility highlighted a missed opportunity that extends far beyond Connecticut's biotech sector. While Gov. Lamont toured laboratories where researchers develop long-acting injectable HIV prevention drugs, the scene raised a compelling question: What if pharmaceutical companies routinely invited advocacy leaders—not just politicians—behind the scenes for plant tours, CEO roundtables, and genuine engagement with the science that drives their work?

This moment arrives at a critical juncture for disease advocacy organizations across therapeutic areas. As federal funding faces unprecedented cuts and advocacy groups struggle for sustainability, the pharmaceutical industry's evolution from traditional grant-maker to authentic community partner offers a transformative model that could reshape how companies support grassroots organizations serving people living with HIV, hepatitis C, lupus, rare diseases, and countless other conditions.

Federal Funding Collapse Creates Cross-Disease Crisis

The Trump Administration's systematic dismantling of federal health programs creates funding gaps that affect advocacy organizations across all disease states. The Centers for Disease Control and Prevention (CDC)'s HIV Prevention Division faces nearly $1 billion in cuts, while the National Institutes of Health (NIH) confronts a 40% reduction in its $3.3 billion HIV research portfolio. Over 200 HIV/AIDS research grants have been terminated since January 2025.

These cuts reverberate beyond HIV advocacy. Chronic disease programs, rare disease research initiatives, and community health grants face similar reductions, leaving advocacy organizations across therapeutic areas scrambling for alternative funding sources. Los Angeles County's 39 HIV organizations received contract termination notices affecting $19 million in CDC funding, a harbinger of what advocacy groups in oncology, autoimmune diseases, and rare conditions could expect.

Industry's $100 Million Evolution

Pharmaceutical companies have been pioneering investments that transcend traditional grant-making, demonstrating innovation in community partnerships that becomes critical as federal funding disappears. ViiV Healthcare's $7.8 million Fund Our Futures pledge, announced in November 2024, exemplifies this shift through their AMP Grant Initiative, where 13 organizations distribute funds to activate over 150 grassroots projects—the first time a pharmaceutical company has empowered communities to make their own funding decisions.

Gilead Sciences leads with $24 million through their Zeroing In program and an additional $12.6 million Setting the P.A.C.E. Initiative serving Black women and girls. Merck's $7 million HIV Care Connect initiative addresses social determinants of health over five years.

These programs demonstrate authentic partnership through direct C-suite executive participation in community dialogues, real influence for community advisory boards on corporate decision-making, and holistic approaches addressing social determinants beyond strict “medical” needs.

A Hard Look at the Two-Tier Funding System

The funding divide between established and grassroots advocacy organizations is stark. amfAR has raised nearly $950 million since 1985, including over $17 million at their 2024 Cannes Gala alone, while the National Minority AIDS Council operates on $5-7 million annually with executive compensation exceeding $400,000.

The reality for smaller organizations is far different. Kristy Kibler, CEO of Lupus Colorado, details the issue: "Small, state level patient groups are drowning in too many programs created to generate funding and need to be more bold in asking for operational support. We can not continue to ask patients and their families to keep these orgs financially afloat."

Warren Alexander O'Meara-Dates, Founder/CEO of The 6:52 Project Foundation, echoes these challenges from the HIV advocacy space: "Without name recognition and measured outcomes for programs, pharma companies often times do not align themselves with us. Additionally, the strict guidelines set in application processes, tend to eliminate our ability to qualify for and/or apply for support."

Pharmaceutical companies contribute to this disparity through their funding patterns. "They often support the two national orgs who do not invest locally or pass along any of that funding which leaves little room in their budgets to support our state level work," Kristy explains. Meanwhile, staffing instability devastates smaller organizations: "We have had two partners eliminate their advocacy teams and leave us without even a contact at their company."

This creates self-reinforcing cycles where established organizations possess infrastructure for complex grant applications and institutional relationships that survive personnel turnover. AIDS United's average grant size of $36,522 often represents a lifeline for smaller entities, but similar micro-funding challenges affect almost all small and upstart advocacy organizations.

Innovation Models Ready for Cross-Disease Application

Sophisticated engagement strategies pioneered in HIV advocacy provide blueprints for other disease areas. European Community Advisory Board meetings bring advocates directly into dialogue with pharmaceutical executives, where community members have real influence on drug development and safety protocols. Bristol Myers Squibb's Global Patient Outreach structure integrates patient voice into all business decisions—a model that spans their oncology and other therapeutic portfolios.

Executive engagement has become central to these partnerships. Carmen Villar, Gilead's VP of ESG and Corporate Citizenship, leads direct dialogue sessions with community leaders, while ViiV executives participate in European advisory meetings where advocates shape corporate strategy. This direct access allows advocacy organizations to influence corporate policies, research priorities, and community investment strategies in real time.

Experiential Investment Over Transactional Charity

The pharmaceutical industry has an unprecedented opportunity to model transformative advocacy investment across all disease states. Rather than simply writing checks, companies should create meaningful engagement opportunities that build advocacy capacity and strengthen community-industry relationships.

Plant tours and research facility visits represent one powerful model. Kristy from Lupus Colorado articulates what advocacy leaders want: "I would want to know what barriers the trials are facing, specifically in the lupus community. It would be helpful to get some education on how their drugs work and why they are novel so that we can help generate excitement and hope in our patients."

Warren from The 6:52 Project emphasizes the importance of understanding pharmaceutical development processes: "What process does new product development go through from concept to market sales. Therein, I would like to learn how much community input is involved during the process."

The value extends beyond education to building trust and credibility. Warren notes that "having access to c-suite executives would benefit my organization because it would allow us to share stories of success and barriers serving marginalized communities in rural areas. Doing so would shape better relationship building with community such that trust of pharma and their intentions could be increased."

Beyond plant tours, pharmaceutical companies can leverage advocacy organizations as strategic resources. "Using us as a resource for trial participants, connection with their sales reps to help us open doors into provider space, co-branded marketing materials," Kristy suggests. Warren emphasizes the credibility factor: "Credibility partnering with a major corporation increases validity of programming offerings for smaller organizations like mine."

The most transformative opportunity lies in giving advocacy organizations real influence over corporate strategy from the beginning. Warren advocates for "including my expertise in developing products for community from conception" rather than "waiting until later in the process." This represents a fundamental shift from charitable giving to authentic partnership.

Forward-thinking pharmaceutical companies should establish advocacy advisory boards that include smaller, state-level organizations across therapeutic areas, not just established national groups. Launch executive mentorship programs pairing pharmaceutical executives with advocacy leaders. Create structured programs bringing advocacy leaders to research facilities and executive meetings. Provide operational support that moves beyond program-specific grants to unrestricted funding that builds organizational capacity.

The convergence of federal funding cuts and industry innovation creates a critical window for establishing alternative advocacy funding ecosystems. Companies that pioneer experiential investment models across disease states will strengthen their community relationships and position themselves as leaders in sustainable public health advocacy.

Imagine a pharmaceutical industry that recognizes the untapped potential in scrappy, nimble advocacy organizations led by people who understand their communities' needs intimately. These creative advocates—like Kristy in Colorado working directly with lupus patients, or Warren serving marginalized communities in rural areas—bring innovation, agility, and authentic community connections that larger legacy organizations often lack. They deserve more than the leftover funding after national organizations take their share.

The pharmaceutical industry has the opportunity to empower and equip these advocates not just with financial resources, but with knowledge, access, and genuine partnership. When companies invest time in plant tours, executive mentorship, and collaborative strategy sessions with smaller advocacy organizations, they tap into a reservoir of community insight and innovative approaches that could transform how medicine reaches the people who need it most. The scrappy organizations working closest to affected communities often have the boldest ideas and the strongest commitment to change—they simply need industry partners willing to see past the polished grant applications of established organizations to recognize the potential of authentic grassroots advocacy.

This moment demands more than transactional charity. It calls for industry to reimagine community investment as true partnership with the advocates who know their communities best.

RFK Jr's Budget Testimony Reveals Concerning Vision for America's Healthcare Safety Net

In a pair of contentious congressional hearings last week, U.D. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. defended the Trump Administration's proposed fiscal year 2026 budget for HHS—a plan that would slash the department's discretionary funding by 26%, amounting to approximately $33 billion in cuts. These hearings before the Senate Health, Education, Labor and Pensions (HELP) Committee and the House Appropriations Committee provided the most comprehensive look yet at the administration's vision for reshaping America's healthcare system and safety net programs.

Secretary Kennedy's testimony, frequently punctuated by tense exchanges with lawmakers, outlined a fundamental restructuring of the federal government's role in healthcare under the banner of "Making America Healthy Again" (MAHA). The vision embraces dramatic cost reductions justified as eliminating "waste" and "bureaucracy," but the evidence suggests these changes would significantly impact access to healthcare for millions of Americans, particularly those living with chronic conditions and those from marginalized communities.

The Magnitude of Proposed Cuts

The scale of proposed reductions across HHS agencies is staggering, particularly for federal research and public health programs. The National Institutes of Health (NIH) faces an $18 billion reduction, nearly 40% of its current budget. The Centers for Disease Control and Prevention (CDC) would see cuts of approximately $4 billion. Multiple agencies would be eliminated entirely, including the Substance Abuse and Mental Health Services Administration (SAMHSA), Health Resources and Services Administration (HRSA), Administration for Strategic Preparedness and Response (ASPR), and the Administration for Community Living (ACL).

During his testimony, Kennedy framed these changes as necessary consolidations rather than eliminations: "We had nine separate offices of women's health. When we consolidate them Democrats say we're eliminating them. We're not. We're still appropriating the $3.7 billion," Kennedy told House lawmakers. He further justified the reductions by claiming that "my department grew by 38% over the last four years. I would say that's great if Americans got healthier, but they didn't. They got worse."

But the budget document itself tells a different story. The proposed restructuring would move many functions to a new "Administration for a Healthy America" (AHA) while explicitly cutting total funding. For example, the Low Income Home Energy Assistance Program (LIHEAP), which provides critical utility assistance to low-income Americans, would be eliminated entirely based on the rationale that "states have policies preventing utility disconnection for low-income households, effectively making LIHEAP a pass-through benefitting utilities in the Northeast," according to the budget proposal.

Impact on Health Coverage and Access

Perhaps most concerning are the projected impacts on health insurance coverage. The proposed budget works in tandem with the reconciliation bill currently working its way through Congress, which would impose significant changes to Medicaid and the Affordable Care Act (ACA) Marketplaces.

According to the Congressional Budget Office (CBO), these changes could increase the number of people without health insurance by 8.6 million, with the total rising to 13.7 million when combined with the expected expiration of the ACA's enhanced premium tax credits. A Kaiser Family Foundation (KFF) analysis projects that the uninsured rate would increase by 5 percentage points or more in Florida, Louisiana, Georgia, Mississippi, and Washington, with 30 states and the District of Columbia seeing increases of at least 3 percentage points.

When Senator Bernie Sanders asked Kennedy about the reconciliation bill's potential to eliminate health insurance for 13.7 million Americans, Kennedy acknowledged that people would lose coverage but characterized the cuts as "eliminations of waste, abuse and fraud." Yet when pressed for specifics, the Secretary could not provide details on several programs affected, including funding delays for Head Start, impacts on clinical trials, and cuts to childhood lead poisoning prevention.

The Mirage of Medicaid Work Requirements

Central to both the budget proposal and the reconciliation bill is the implementation of Medicaid work requirements. Under these provisions, certain Medicaid recipients would need to work at least 20 hours per week to maintain their coverage. Proponents, including Kennedy, argue this would reduce dependency and promote employment.

However, extensive research contradicts these claims. According to Congressional Budget Office's own analysis, Medicaid work requirements "would have a negligible effect on employment status or hours worked by people who would be subject to the work requirements." This aligns with the real-world experience from Arkansas—the only state to fully implement such requirements—where more than 18,000 people lost coverage while employment rates remained unchanged.

The evidence shows that most Medicaid recipients who can work already do. A KFF analysis found that 92% of Medicaid adults under age 65 are either working (64%), caring for family members (12%), dealing with illness or disability (10%), or attending school (7%). Only 8% report being retired, unable to find work, or not working for another reason.

Moreover, a recent Commonwealth Fund study projects that implementing nationwide Medicaid work requirements would have devastating economic consequences. Between 4.6 million and 5.2 million adults could lose Medicaid coverage in 2026, cutting federal funding to states by $33 billion to $46 billion in the first year. This would trigger a $43 billion to $59 billion reduction in economic activity, a loss of 322,000 to 449,000 jobs nationwide, and a $3.2 billion to $4.4 billion reduction in state and local tax revenues.

"Our findings demonstrate a paradox of Medicaid work requirement policies: rather than bolstering employment—as claimed by proponents—they could actually reduce employment and people's earnings," the study's authors conclude. These economic impacts would extend beyond just expansion states, affecting all states due to interconnected economies.

Transparency and Public Input Concerns

Beyond specific policy proposals, the administration's approach to transparency and public input has raised alarm. In March 2025, HHS rescinded the Richardson Waiver, which had been in place since 1971 and required public comment periods for certain HHS actions. Senator Ron Wyden characterized this move as a shift from "radical transparency" to "radical secrecy," saying Kennedy has "shut the gates, locking out doctors, patient advocates, and everyday Americans from weighing in on the chaotic disruption of America's healthcare."

When questioned about specific programs being cut, Kennedy repeatedly cited a court order preventing him from discussing reorganization details. Yet this didn't stop him from defending the broader vision of massive structural change, leaving lawmakers and the public with limited ability to assess the full impact of the proposals.

Implications for Patients and Advocates

For people living with chronic conditions, including HIV, hepatitis, and other serious illnesses, the proposed changes would create multiple barriers to care. Reduced funding for research could slow the development of new treatments. Medicaid work requirements could jeopardize coverage for those whose conditions make consistent employment difficult but who don't qualify for disability exemptions. Cuts to public health programs would impact prevention efforts, disease surveillance, and outbreak response capabilities.

Rural communities face particular risks, with hospital closures likely to accelerate. A recent report found that 742 rural hospitals are already at risk of closing, with over 300 classified as being at "immediate risk." Cuts to Medicaid funding would further destabilize these essential providers.

Advocates must understand that while Secretary Kennedy has stated that appropriated funds will be spent as directed by Congress, the administration's budget proposal reveals its long-term vision for drastically reducing the federal government's role in healthcare. This makes engagement with congressional representatives, particularly those on appropriations committees, absolutely critical in the coming months.

The administration's budget proposal represents a fundamental reshaping of America's healthcare safety net that would leave millions of Americans with less access to care, despite evidence that key proposals like Medicaid work requirements fail to achieve their stated goals and may actually harm state economies and healthcare systems. As policymakers debate these changes, the voices of patients and advocates must be centered to ensure that vulnerable populations are not left behind in the pursuit of government efficiency.

World AIDS Day: Together, Forward.

Every December 1st, World AIDS Day serves as a time for reflection, honoring those we’ve lost to HIV/AIDS, and recommitting to the work ahead. This year, the Office of National AIDS Policy unveiled the theme “Collective Action: Sustain and Accelerate HIV Progress” on October 4th. However, by November 5th, many of us were questioning how we can sustain and, let alone accelerate, our efforts following the general election and the resulting uncertainty.

For most, World AIDS Day is an annual event. But for some of us, every day is World AIDS Day.

Since my diagnosis in 2016, this day has been deeply personal—a time for introspection. It’s a day to recognize and honor those who came before me, those who fought for better lives for themselves and their communities. I feel immense gratitude for their sacrifices. While this day often presents an opportunity to celebrate our progress, it can be challenging to celebrate when that progress remains unequal. It’s even harder to celebrate knowing the uncertainty that looms after the recent election.

Over the past few weeks, I’ve had extensive conversations with individuals in my community who are grappling with fear and anxiety about the unknown. This fear is valid. Concerns about access to gender-affirming care, uphill challenges in the public health sector, and worries for immigrants are all real. The incoming Administration has already indicated plans to target marginalized communities, dismantle essential programs and departments, and undermine critical initiatives. While campaign promises often fall short, they can sow seeds of doubt and concern about what lies ahead.

Just days after the election, I attended a meeting of the U.S. People Living with HIV Caucus. These meetings are among my favorites, always inspiring, and filled with legends of advocacy—many of whom have been at the forefront of this fight since the early days of the AIDS crisis. 

Space was allocated for meeting attendees to express their emotions regarding the election and the future. Many expressed sadness and distress about the outcome. I’m often quiet in these meetings, I feel like a small child in a room full of grown-ups. After listening to others’ perspectives, I decided to raise my hand. I spoke about my concerns for LGBTQ+ youth and the communities disproportionately affected by HIV. Despite my concerns, I expressed a sense of resolve.

Following the 2016 election, I, like many others, felt lost, and angry. Struggling to find purpose, I reached out to the local LGBTQ+ center to volunteer. I discovered that building community, learning to love, and leaning on one another provided hope amidst uncertainty.

Much has transpired in the eight years since then. Many of us who engaged during that time have continued to advocate for various issues. I’ve reminded myself and others that while we may face unknown and challenging days ahead, we have consistently fought for a better world regardless of who is in power. This has equipped us with two crucial tools for navigating an uncertain future: experience and community.

Throughout history, communities have come together to counteract the harms inflicted by those in power. Including the Gay Liberation Front, ACTUP, and the civil rights movement. Those who are knowledgeable about our collective history are better prepared to prevent it from repeating or at least minimize the damage. The knowledge of our rich history of transforming the tide gives me the most significant asset in this moment: hope.

Back in November, I posed a question: are we ready to answer the call of this moment? I don’t believe that question is any less relevant today. We never knew what that call would entail, yet here we are. This year, on World AIDS Day, and likely every day for the next four years, I hold onto the words my friend Jen Laws shared with us shortly after the election: “We are not called to this work because it is easy; we are called to this work because it is necessary.”

While we face an uncertain path ahead, we have the blueprints from our history, and the support of our communities to guide us. We must approach each day, one at a time, while clinging to hope with unwavering determination. Not because things will be easy, but because it is our inherent calling to look forward, to work collectively to not only sustain but also to shape the future of our country, and the world. It would be an ultimate disgrace to let our friends, family, and elders succumb to a plague, and for us to abandon our mission at this moment.

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.

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.

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.

SCOTUS Sets Dangerous Precedent for Incarcerated People Needing Care

The 8th Amendment to the United States Constitution reads as follows:

“Excessive bail shall not be required, nor excessive fines imposed, nor cruel and unusual punishments inflicted.”

Long standing precedent, Estelle v. Gamble, sets one standard of “cruel and unusual punishment” as “deliberate indifference” to the medical needs of incarcerated people. Additional precedents include an affirmative need to evaluate these medical needs on an individual basis, cannot be excused as mere neglect when an incarcerated person is at “substantial risk of harm” if that need is not met, and that providing care that is “grossly inadequate as well as by a decision to take an easier but less efficacious course of treatment” are also considered measures of “deliberate indifference”.

In August 2020, the US Court of Appeals for the 6th Circuit added an asterisk: “…if the state decides it can afford to…” provide the care required under the 8th amendment [paraphrasing].

Last month, the Supreme Court of the United States refused to hear the appeal of Atkins v. Parker, where a group of incarcerated people alleged their 8th amendment rights were violated because the state was rationing their HCV related care. In the 6th Circuit appeal, the state argued, successfully, that rationing care was “reasonable” due to budgetary constraints supposedly outside the control of the prison system.

Coverage of both appeals referred to a 2018 settlement in Michigan, wherein the state’s Medicaid program, after suit, expanded coverage to include direct acting agents. However, in a lone descent, Judge Gilman drew more direct parallels in other SCOTUS and 11th Circuit rulings regarding prison overcrowding and access to AZT (case was in 1991) for incarcerated people, ruling in part “The fast moving status of research and medical advances in AIDS treatment is continually redefining what constitutes reasonable treatment.”, respectively. Indeed, in Atkins, the state’s position boils down to “new drugs are too expensive” to be “reasonable” for incarcerated people to have access to. The majority argued because Tennessee’s Department of Corrections Medical Director, Dr. Williams, had only recently restructured the state’s rationing of DAAs and individual assessments, the state had fulfilled its obligations, within budgetary constraints. Judge Gilman correctly argued the state’s medical administrator for the prisons was obligated to request appropriate funding to meet these needs in order to fulfill the state’s 8th amendment requirements – of which, no evidence was presented to prove Dr. Williams did make such a request. Judge Gilman closes the descent with well-established citation that treating HCV early reduces overall costs of care compared to delayed or denied care.

That said, with SCOTUS refusing to hear the appeal, affected people in prisons are facing a dangerous precedent of state officials shirking their Constitutional responsibilities to provide a basic standard of care to the people in their custody. Legislatures merely need to neglect increasing a budget, as we’ve seen in other state-run health care programs, in order to avoid meeting their Constitutional duties.

Interestingly, also in April, the Department of Justice filed a statement of interest in a case in the Georgia, where an incarcerated transgender woman has been subject to violent attacks and refusal of care. The Biden administration’s position here is denying incarcerated people gender affirming medical care is a violation of the 8th amendment’s protections and is thus “deliberate indifference” to the person’s medical needs.

There’s an intersection between Diamond and Atkins that cannot be missed. While the timing of Atkins didn’t favor intervention by the current administration, this administration must also recognize the precedent set forth by Atkins, fight for appropriate funding measures to meet the medical needs of incarcerated people, and update Federal Bureau of Prisons HCV guidance to with regard to prioritization not justifying rationing of care. As with nearly every infectious disease, prisons are both a “canary in the coal mine” of the local community and the ideal environment for manifesting new diagnoses.

The most startling statistic in Atkins is even after DAAs were available, at least 109 incarcerated people had died due to HCV complications. Death by neglect, by rationing is still a death sentence.

Even as I write this, President Biden argued “health care should be a right, not a privilege.”

As it turns out, according to the 6th Circuit, it’s a right, with a large asterisk.

To ensure this injustice is answered for, advocates must remember the courts do not always find justice and our advocacy must reach every level of government. If we don’t, the asterisks will continue to add up.