Congress Rejects HIV Cuts, But Flat Funding Won't End the Epidemic
As of this writing, the FY2026 Labor, Health and Human Services appropriations bill awaits final passage. The Senate is expected to pass the package Friday night, with the House voting Monday evening. A brief partial shutdown through the weekend appears unavoidable. The following analysis assumes the legislation passes as currently written.
After a year of proposed cuts that created significant uncertainty for HIV programs and the communities they serve, Congress has negotiated a spending package that maintains current funding levels while falling short of what ending the epidemic requires. The bill, released January 20, 2026, rejects over $1.7 billion in proposed cuts and preserves funding for Ryan White, the Ending the HIV Epidemic initiative, and CDC prevention programs. It also includes the first major pharmacy benefit manager (PBM) reforms in Medicare Part D in nearly two decades, a development with significant implications for patient access to HIV and hepatitis C medications.
Yet flat funding cannot meet growing demands, particularly as long-acting therapeutics promise to transform HIV prevention and care for those who need them most. In an environment where maintaining the status quo requires extraordinary effort, advocates must reckon with an uncomfortable truth: the status quo is not enough to end the epidemic.
What Was at Stake
The path to this appropriations package has been fraught, to say the least. In May 2025, the Trump administration proposed $31.3 billion in cuts to the Department of Health and Human Services, including a 40% reduction to NIH and the consolidation of its 27 institutes into eight. The proposal called for eliminating HIV prevention programs entirely and restructuring HHS agencies, including folding SAMHSA (Substance Abuse and Mental Health Services Administration) into a new "Administration for a Healthy America."
The House Appropriations Committee's September 2025 bill embraced much of this vision. It provided zero funding for CDC HIV prevention programs, proposed cutting the Ryan White HIV/AIDS Program by 20%, and would have eliminated the Ending the HIV Epidemic initiative completely. CDC funding faced a nearly 20% reduction overall.
The final package represents a decisive rejection of these proposals. Congress preserved the Ryan White HIV/AIDS Program at $2.6 billion, maintained the Ending the HIV Epidemic initiative at $165 million, and funded CDC HIV/AIDS, Viral Hepatitis, STDs, and TB Prevention at $1.384 billion. The Minority HIV/AIDS Fund received $56 million. The bill closely tracks the bipartisan Senate proposal that advanced from committee in July 2025, a predictable outcome given the Senate's historical role as a moderating force on appropriations. The Administration's proposed cuts and the House bill were never likely to survive a bicameral process intact, but their existence created uncertainty that disrupted planning and strained already stretched public health infrastructure throughout the year.
Flat Funding Is Not Progress
Preserving current funding levels is not the same as meeting current needs. The American Academy of HIV Medicinedescribed the bill as presenting "a mixed picture for domestic HIV programs," noting that level funding will not achieve the goals set forth in the Ending the HIV Epidemic plan launched during the first Trump administration or address a rise in HIV transmission outbreaks as we’ve seen in Maine and New York.
The timing makes this particularly frustrating. Long-acting injectable treatments and prevention options are transforming what is possible in HIV care. Lenacapavir for PrEP offers twice-yearly dosing. Long-acting cabotegravir and rilpivirine provide monthly or bimonthly treatment options for people who struggle with daily pills or face adherence barriers. These innovations could reach people who have historically fallen through the cracks of our prevention and treatment infrastructure, but scaling them requires investment that flat funding cannot provide.
Prevention initiatives, workforce development, training programs, and the rollout of new innovations are particularly vulnerable under current funding levels. Without targeted investment, long-acting options will remain inaccessible to people in Medicaid-dependent, rural, and underserved areas. The tools exist to end HIV as a public health threat. The political will to fund their deployment does not.
Within the broader infectious disease category, the bill sends mixed signals. Viral hepatitis prevention received a $3 million increase to $46 million, one of the few areas to see any growth. STI prevention, by contrast, took a $10 million cut to $164 million. While provisional 2024 data shows overall STI cases declining for the third consecutive year, reported syphilis cases and congenital syphilis remain at historically high levels, with continued increases in some demographics. Cutting prevention funding while these disparities persist is shortsighted.
Harm Reduction: Evidence Ignored
The bill's approach to harm reduction reveals a troubling gap between public health evidence and legislative ideology. Section 525 maintains the longstanding prohibition on using federal funds to purchase sterile needles or syringes, with a narrow exception for jurisdictions experiencing or at risk for HIV or hepatitis outbreaks. This reactive approach undermines prevention and contradicts the government's own evidence base.
The VA, in a December 2025 analysis of its harm reduction programs, described syringe services programs as "one of the most effective public health interventions ever devised," noting they decrease new HIV and HCV infections by up to 67% and increase the likelihood of achieving abstinence five-fold. The VA further emphasized that these programs "do not enable or increase drug use, nor do they cause increases in crime."
The appropriations bill ignores this evidence. Report language frames harm reduction through an abstinence-first lens, elevating the administration's efforts to "prioritize prevention, treatment, and long-term recovery." This framing treats harm reduction and recovery as opposing forces when the evidence shows they are complementary. Meeting people where they are is essential to eventually connecting them with treatment. Restricting proven interventions on ideological grounds costs lives.
The bill does maintain substance use disorder treatment funding, with SAMHSA receiving $7.44 billion (a $65 million increase), State Opioid Response Grants at $1.6 billion, and CARA First Responder Training at $59 million. These investments matter. But they would matter more if paired with evidence-based harm reduction that keeps people alive long enough to access treatment.
PBM Reform: A Genuine Win With Implementation Risks
The inclusion of pharmacy benefit manager reforms represents a genuine policy achievement and the first major PBM reform in Medicare Part D in nearly 20 years. For people living with HIV and hepatitis C who depend on specialty medications, these provisions could meaningfully improve access and reduce costs.
The reforms target the opaque practices that have allowed PBMs to profit at the expense of patients and plan sponsors. Beginning in 2028, PBM compensation in Medicare Part D will be delinked from drug list prices, eliminating the perverse incentive to favor higher-priced medications. PBMs will be required to pass through 100% of manufacturer rebates and fees to plan sponsors. The bill bans spread pricing in Medicaid, where PBMs have profited by charging plans more than they reimburse pharmacies. CMS receives $188 million for implementation and new authority to define and enforce "reasonable and relevant" contract terms between Part D plans and pharmacies.
The transparency provisions are equally significant. PBMs must report pricing information, including all rebates negotiated with manufacturers, directly to plan sponsors and HHS. For PBMs with affiliated mail-order or specialty pharmacies, the bill requires disclosure of any benefit design parameters that steer prescriptions to those pharmacies. This addresses a core concern: vertically integrated PBMs using formulary placement and prior authorization requirements to drive volume to their own pharmacies at the expense of patient choice and community pharmacy access.
For people living with HIV, the stakes are concrete. Specialty HIV medications flow through PBM-controlled channels that have historically lacked transparency around rebates, formulary decisions, and pharmacy reimbursement. The reforms create mechanisms to challenge contract terms that effectively exclude community pharmacies or impose unreasonable administrative burdens. The appeals process for pharmacies to dispute terms that fail the "reasonable and relevant" standard could prove particularly important for independent and specialty pharmacies serving HIV populations.
The risk, as always, lies in implementation and industry adaptation. PBMs have proven adept at restructuring their business practices to maintain margins when regulations target specific revenue streams. The provisions take effect in 2028 for Medicare and 2029 for pharmacy contract standards, giving industry ample time to identify workarounds. Advocates should watch for attempts to shift costs to patients through benefit design changes, or to game the "reasonable and relevant" standard through contract terms that are technically compliant but practically exclusionary. The history of PBM regulation is a history of regulatory arbitrage, and vigilance will be required to ensure these reforms deliver their intended benefits.
Structural Protections and Access Provisions
Beyond funding levels, the bill includes important structural provisions. It rejects the administration's proposed HHS restructuring and requires the Secretary to provide detailed justification to Congress at least 60 days before any reorganization affecting CDC functions. Grant terminations now require three days' advance notice to appropriations committees. These guardrails matter in an environment where administrative action has disrupted programs faster than legislative oversight can respond.
The package extends Medicare telehealth waivers through December 31, 2027, maintains community health center funding at $4.6 billion plus bridge funding, and delays Medicaid disproportionate share hospital cuts until September 2028. These provisions support healthcare access in underserved communities where HIV and viral hepatitis programs depend on functioning safety-net infrastructure.
The Work Ahead
Assuming the bill passes as expected, funding appropriated is not funding effectively deployed. The same administration that proposed eliminating these programs will now oversee their implementation. How HHS manages grant administration, staffing, and program guidance will determine whether level funding translates into maintained services or quiet erosion. The bill's requirements for advance notice on grant terminations and reorganization plans provide some guardrails, but vigilance will be required.
The United States has the tools to end HIV as a public health threat. Long-acting prevention and treatment options could reach people who daily pills cannot. Harm reduction keeps people alive and connected to care. Ryan White and the EHE initiative provide the programmatic infrastructure. What we lack is the political will to fund these efforts at the scale required and the moral clarity to implement evidence-based policy over ideological preference.
Flat funding is not progress. It is a holding pattern in an environment where holding ground required effort. The work ahead is ensuring these programs are implemented effectively while continuing to push for the investment these programs actually need. The fight for adequate funding, evidence-based policy, and equitable access continues.
Florida's ADAP Cuts Put 16,000 People Living with HIV at Risk
On January 8, 2026, the Florida Department of Health (DOH) sent an email to healthcare partners announcing sweeping changes to the state's AIDS Drug Assistance Program (ADAP), effective March 1, 2026. In the days that followed, thousands of Floridians living with HIV received letters informing them that their access to life-saving medications and insurance coverage would be drastically curtailed in less than two months. The announcement came with minimal warning and no prior engagement with the affected community, marking an alarming departure from decades of collaborative public health practice and threatening to unravel progress made toward Ending the HIV Epidemic.
What Florida Is Doing
The changes are significant in scope. Florida DOH is reducing ADAP income eligibility for uninsured clients from 400% of the Federal Poverty Level (FPL) down to 130% FPL, which translates to an annual income of approximately $20,345 for a single person. The state is eliminating insurance premium assistance, which previously helped people maintain coverage through the Affordable Care Act (ACA) marketplace. Florida is also removing Biktarvy, the most widely prescribed single-tablet HIV regimen, from the ADAP formulary while restricting Descovy to people with renal insufficiency.
According to the National Alliance of State and Territorial AIDS Directors (NASTAD), Florida ADAP served 32,248 clients in 2024, with 40% at or below 100% FPL, 10% between 101–138% FPL, and 50% between 138–400% FPL. With a cutoff at 130% FPL, NASTAD estimates that more than 16,000 people will lose ADAP coverage. The administration has offered a different estimate. At a January 14, 2026 Florida Senate Appropriations Committee hearing, Florida Surgeon General Joseph Ladapo estimated approximately 10,000 people would be affected.
The numbers matter less than the underlying reality: half of all Floridians currently relying on ADAP for uninterrupted access to HIV treatment face immediate risk of treatment disruption based on an administrative eligibility change, not clinical need.
The Stated Rationale and Its Problems
DOH has framed the changes as necessary to prevent a projected $120 million budget shortfall, attributing the crisis to rising health care insurance premiums and the expiration of enhanced ACA premium tax credits at the end of 2025. The federal government shutdown in October 2025, during which Republicans and Democrats fought over the impending expiration of these tax credits, did lead to their lapse on December 31. Florida, with nearly 4.5 million people receiving marketplace insurance and roughly 31% of ADAP clients enrolled in marketplace plans, faces genuine financial pressure.
What DOH has not provided is transparency around its budget calculations. At the Senate hearing, David Poole, who oversaw Florida's AIDS program from 1993 to 2005, pointed out that the state transparency website shows $120 million in rebate revenues from the prior year. Testimony from a former consumer representative to the Florida DOH ADAP Advisory Workgroup indicated that information shared with stakeholders suggests the expanded tax credits had minimal impact on the program, with insurance premiums increasing only about $150 per client annually. The state has not publicly released an ADAP budget in more than a year, according to Malcolm Ried of the U.S. People Living with HIV Caucus.
When Senator Carlos Guillermo Smith asked Kendall Kelly, director of policy and budget under Governor DeSantis, about the state's authority to make such dramatic cuts to a federally funded program, Kelly referenced a potential $700 million shortfall for the health department overall but could not provide specifics about federal funding changes. No other state has made such drastic changes to its ADAP program this year. Pennsylvania, facing similar budget pressures, reduced its eligibility from 500% to 350% FPL—a far more measured response.
The Clinical and Public Health Stakes
Treatment interruption for a person living with HIV is a clinical risk, not an administrative inconvenience. When antiretroviral therapy (ART) is interrupted, viral rebound occurs, drug resistance can develop, viral suppression is lost, and the risk of onward transmission increases. The science is clear: consistent treatment keeps people healthy and prevents new transmissions. This principle underlies the entire Ending the HIV Epidemic (EHE) initiative, which targets sustained viral suppression as one of its four core strategies.
Dr. Paul Arons, the former Medical Director of the state HIV/AIDS program from 1989 to 2007, testified that asking a person with HIV whose treatment is working to change regimens for non-medical reasons is a traumatic request. According to the U.S. Department of Health and Human Services (HHS), 89.6% of clients enrolled in the Ryan White HIV/AIDS Program achieved viral suppression as of fiscal year 2025. HIV medications have among the highest adherence rates of any chronic disease treatment. Disrupting that success for opaque and questionable budget claims defies logic and evidence-based practice.
The formulary changes compound the harm. Biktarvy is prescribed to 60% of Florida ADAP clients. The state has offered no transition plan, no guidance on which generics will replace it, and a warning that additional formulary restrictions may follow. The International Association of Providers of AIDS Care (IAPAC) has called this approach drug rationing under the banner of cost control.
A Failure of Process
Federal Ryan White legislation and HRSA HIV/AIDS Bureau (HAB) guidance require states to engage stakeholders, including people living with HIV, in program planning and to explore cost-saving measures before implementing cost-cutting measures like eligibility reductions or formulary restrictions. The ADAP Manual from HRSA HAB distinguishes between cost-saving measures (improving efficiency, expanding health care coverage, maximizing rebate collection) and cost-cutting measures (restricting enrollment or benefits). Waiting lists are described as a last resort.
Florida DOH bypassed this framework entirely. The eligibility level for Florida's ADAP program is established in regulation, requiring a public regulatory process to change. No such process was undertaken before this announcement. The announcement came with less than two months notice, days before the ACA open enrollment period ended, and without prior consultation with advisory workgroups or community partners. Testimony at the January 14 Senate hearing revealed that stakeholders learned of the changes only days earlier and were never brought in to discuss cost containment measures.
The timing compounds the harm. Florida's plan to cancel premium assistance was announced just days before the end of ACA open enrollment. ADAP enrollees had selected plans approved by the program, often with higher premiums, because ADAP covered the cost. Canceling those subsidies as of March 1 leaves people locked into plans they cannot afford with no ability to change their enrollment.
The abrupt nature of the announcement left people living with HIV scrambling. "This is deeply personal for me—not only do I rely on this coverage to stay virally suppressed, but I also need it to manage other health issues as I age with HIV," Kamaria Laffrey, Co-Executive Director of The SERO Project and a Florida resident, told Positively Aware. "With no warning and no transparency, this feels like a random and unjustified attack on people simply trying to live."
The lack of transparency extends to notification. Some people will not receive termination letters because they did not consent to mailings at home. County health departments, according to testimony, have not received guidance on tracking these clients. The two-month transition window is unrealistic for navigating alternative coverage in a fragmented insurance market, particularly after open enrollment has closed.
Historical Echo
This situation carries echoes of an earlier Florida crisis. In the early 2010s, following the 2008 recession, Florida maintained the largest ADAP waiting list in the nation, with thousands of people waiting months to access medications. Advocates fought to implement cost containment measures and stabilize the program. The state eventually recovered, but the lessons of that period—the importance of transparency, stakeholder engagement, and exploring alternatives before cutting eligibility—appear to have been forgotten.
What Happens Next
The policy implications extend beyond Florida. Because all state ADAPs rely on the same federal funding streams, what happens in one state signals possibilities for others. IAPAC has urged clinicians in states with similar political and fiscal dynamics to engage their representatives proactively. The Save HIV Funding campaign has noted that the Florida changes come alongside broader health system destabilization, including Medicaid cuts and disruptions to federal HIV programs, creating a compounding effect.
At the state level, Chair Jay Trumbull of the Senate Appropriations Committee indicated the issue would likely be negotiated during budget talks. Surgeon General Ladapo acknowledged the situation could become a crisis without intervention and suggested funding approaches that might not be onerous. Yet DOH has not requested additional state funds, despite Florida holding $17 billion in reserves.
What Needs to Happen
The immediate need is a complete halt to the March 1 implementation while finances are fully reviewed and medically sound alternatives are developed. Florida must release transparent budget data, engage stakeholders as required by federal law, and explore the full range of cost-saving measures before resorting to eligibility cuts and formulary restrictions.
For advocates and policymakers watching this unfold, the Florida crisis offers a clear lesson: when states treat HIV programs as budget line items rather than public health infrastructure, people fall out of care, viral suppression declines, and new transmissions occur. The economic argument for maintaining access is well-established: keeping people in care and virally suppressed prevents costly emergency interventions, hospitalizations, and new transmissions that carry their own long-term treatment costs.
Florida has the resources, the federal funding framework, and the clinical expertise to maintain a functional ADAP program. What it lacks, at this moment, is the political will to use them or the moral grounding to not sacrifice the most vulnerable. The cost of that failure will be measured in preventable illness, unnecessary suffering, and setbacks to the national goal of Ending the HIV Epidemic. We cannot let that happen.
Equipping Patients with Tools to Reclaim the Promise of 340B
The 340B Drug Pricing Program was created with a clear and compelling purpose: to “stretch scarce federal resources as far as possible, reaching more eligible patients and providing more comprehensive services.”s. For decades, the program has played an important role in supporting access to medications for people living with chronic and life-threatening conditions, including HIV, by providing medications at a steep discount to safety-net providers tasked with fulfilling the program’s statutory intent
But today, that clear and compelling purpose has been thwarted, the safety net with its growing wear and tear from years of abuse and margin-motivated cuts have created the moment we find ourselves in.
Today, instead of consistently benefiting patients, the program has increasingly become a financial engine for large hospital systems and for-profit entities—often with no transparency or accountability to demonstrate how savings are being used to improve patient care. With continued misguided state-level legislation, and without meaningful federal reform, 340B risks drifting even further away from its legislative intent and deeper into a system that prioritizes padded pockets over patient outcomes.
Program Growth —Without Guardrails
Since its creation in 1992, 340B has grown dramatically in size and complexity. Covered entities have expanded, contract pharmacy arrangements have multiplied, and revenue tied to discounted drugs has surged into the tens of billions of dollars annually.
Yet the statute itself remains narrowly focused: 340B was never intended to be a profit center. Congress designed it to benefit patients, not to subsidize hospital consolidation, executive compensation, or unrelated capital expansion.
Today, patients are frequently left with pressing questions: Why are my drug costs still increasing at the pharmacy counter? “Why isn’t 340B being used to make my meds cheaper for me?” Why do patients receiving care at 340B hospitals still encounter medical debt, often sent to aggressive collection agencies, and face access challenges?
The uncomfortable truth is that there are too many loopholes that are being exploited, no federal requirement for hospitals to pass savings directly to patients—or even to report how those savings are used. This lack of transparency allows patient benefit to become optional rather than required.
State-level efforts to address 340B challenges have created a patchwork of laws that deepen confusion and conflict, particularly with other federal policies like the Inflation Reduction Act (IRA). These fragmented approaches fail to address the core issue: the absence of clear federal standards that define patient benefit, accountability, and program integrity.
The harsher truth? State-Level Legislation has not improved patient outcomes. Recent data from IQVIA demonstrates that access to medications, nor medication abandonment rates have improved in states that have passed contract pharmacy expansion. These truths reveal that patchwork state laws cannot fix a federal problem.
Federal reform is essential to: recenter patients as the primary beneficiaries of 340B, establish transparency and reporting requirements tied to patient outcomes, prevent misuse by for-profit entities operating under the guise of safety-net care, and ensure any program growth aligns with access, affordability, and equity—not consolidation. Without reform, patients will continue to be excluded from decisions made in their name, while the program’s credibility—and long-term sustainability—remains at risk. There are solutions on the table including the recently introduced ACCESS Act but it remains stagnant in the halls of congress.
Patients Must Have a Real, Meaningful Seat at the Table
The reality is the federal government is slow at enacting reform, and one of the most glaring gaps in the 340B debate at all levels is the absence of patient voices. Policymakers hear regularly from well-monied interests like hospitals, pharmaceutical manufacturers, and pharmacies—but far too rarely from the people the program was meant to serve.
Patients deserve more than rhetoric. They deserve real tools to engage, educate, and advocate.
That’s why we at Community Access National Network (CANN) are expanding the 340B Patient Advocacy Toolbox—adding to our growing collection of resources designed to empower patients and community advocates with the knowledge and language needed to participate meaningfully in policy conversations.
Adding to our existing infographics, state legislation tracking, and state fact sheets we are adding:
Policy Brief: Conflicts Between State 340B Laws & Proposed Federal Reforms
A comprehensive guide to the conflicts between state legislation and 340B ACCESS Act (HR 5256), the SUSTAIN 340B discussion draft, the 340B Rebate Model Pilot introduced by the Health Resources & Services Administration (HRSA), downstream effects of drug pricing provisions within the Inflation Reduction Act (IRA), and Medicare Part D’s as-of-current “voluntary” claims submissions form.
Accompanying this brief are two infographics that highlight the prohibitions states have enacted, and the conflicts that arise between these state-level laws and these proposed federal reforms.
Policy Brief: State 340B Mandates Do Not Improve Patient Access/Cost
An insightful, IQVIA data-driven look at the impact of state-level mandates, their impact on patient access and medication abandonment rates following the enactment of these laws.
All of CANN’s 340B tools are rooted in a simple belief: informed patients are powerful advocates. By equipping patients with these tools, CANN is working to shift the 340B conversation away from institutional protectionism and toward patient-driven reform.
The Road Ahead
As state legislative efforts continue, the future of 340B depends on whether policymakers are willing to listen to patients and act with clarity and courage. CANN is committed to ensuring that patient voices are not just included—but prioritized.
By advocating for federal reform and equipping patients with the tools to engage, CANN is committed to reclaiming the promise of 340B and realign it with its original mission: putting patients first.
Patients should not have to guess whether they benefit from a program designed in their name.
Because safety-net programs only work when the safety net actually reaches the people it was built for.
ACA Subsidies in Limbo: What the Senate Framework Means for Patients
The enhanced Affordable Care Act (ACA) premium tax credits expired on January 1, 2026, and millions of Americans are now facing the consequences. According to the Kaiser Family Foundation, subsidized enrollees are seeing their out-of-pocket premium payments increase by an average of 114%. For a single mother in social work like Katelin Provost, that means watching her monthly premium jump from $85 to nearly $750, a ninefold increase that forces an impossible choice between her own coverage and her daughter's.
This is the reality for more than 20 million Americans who benefited from the enhanced subsidies first enacted in 2021 as a COVID-19 pandemic response. The Wall Street Journal reports that roughly four in ten ACA enrollees had been paying nothing toward their premiums under the enhanced credits—more than double the share in 2020. That era ended last week, and Congress is now scrambling to respond amid growing political pressure and the specter of another government shutdown deadline on January 30.
The House Vote: Forcing the Issue
Last Thursday, the House passed a three-year extension of the enhanced subsidies, a bill that has no chance of becoming law in its current form. The Senate rejected an identical measure in December. So why hold the vote?
The answer lies in a procedural rebellion that caught House leadership off guard. Four swing-district Republicans—Reps. Mike Lawler of New York and Robert Bresnahan, Brian Fitzpatrick, and Ryan Mackenzie of Pennsylvania—signed a Democratic discharge petition to force the vote over Speaker Mike Johnson's objections. Last Wednesday, nine Republicans joined Democrats on a procedural motion to advance the bill.
These centrist Republicans are calculating political survival. As Rep. Fitzpatrick told The Hill, "Everyone's lamenting discharge petitions. There's an easy way to fix that: Put bills on the floor that have majority support. It's not hard." The vote serves a strategic purpose: it creates a legislative vehicle the Senate can amend and sends a clear signal that inaction carries electoral consequences in November's midterms.
The Senate Framework Takes Shape
While the House engages in political theater, a bipartisan Senate group led by Sens. Bernie Moreno (R-Ohio) and Susan Collins (R-Maine) has been negotiating a compromise. According to Politico, legislative text could be ready as early as today.
The emerging framework includes a two-year extension of enhanced subsidies with several Republican-demanded reforms. The Wall Street Journal outlines the key elements: an income cap excluding households earning more than 700% of the federal poverty level (approximately $225,000 for a family of four), a requirement that enrollees pay at least $5 per month toward their coverage, and $100,000 fines on insurers who sign up "phantom enrollees" without their knowledge. In the second year, enrollees would have the option to direct their subsidy funds into a pre-funded health savings account instead of having them flow to insurance companies.
The framework also reportedly includes measures to directly fund cost-sharing reductions (CSRs), which could generate significant savings. The Committee for a Responsible Federal Budget estimates that direct CSR funding would reduce deficits by over $50 billion over a decade while lowering silver plan premiums by 10% to 20%. This would end the practice of "silver loading," where insurers inflate silver plan premiums to compensate for CSR costs the federal government stopped paying in 2017.
Sen. Moreno told NPR, "We're in the red zone. But that does not mean a touchdown. It could mean a 95-yard fumble."
The Barriers to a Deal
Two sticking points threaten to derail negotiations: abortion coverage and the elimination of $0 premium plans.
On abortion, Republicans want explicit language preventing subsidies from flowing to plans that cover the procedure. Democrats counter that current law already addresses this concern—ACA plans that cover abortion must charge enrollees a separate $1 per month, segregating federal funds from abortion services. Sen. Ron Wyden (D-Ore.) warned Fox News, "I am not going to open the door to Hyde, given what happens and what has been seen historically when you do that. If you open the door, it will get drafty in a hurry."
President Trump complicated matters when he told House Republicans to be "flexible on Hyde," drawing pushback from conservatives. Sen. Moreno has since indicated the framework does not change current abortion policy, calling the issue "peripheral" to the core negotiations.
The second obstacle carries more direct implications for patient access. The proposed $5 monthly minimum premium—designed as an anti-fraud measure—would eliminate $0 premium plans that currently cover millions of low-income enrollees. Sen. Wyden called this a "rate hike" affecting 8 million people. Sen. Jeanne Shaheen (D-N.H.) noted, "Data shows that you lose a lot of people at the lowest income levels when you do that."
This concern is grounded in evidence. The NIH Clinical Guidelines on Antiretroviral Therapy are direct: "Out-of-pocket costs for people with HIV can be prohibitive, creating a barrier to the initiation and continuation of ART. Cost sharing results in higher rates of people not initiating ART, prescription abandonment at the pharmacy, decreased adherence, and more frequent drug discontinuation." The guidelines note that in 2022, the CDC's Medication Monitoring Project found that among people with HIV who had stopped taking antiretroviral therapy, 34% reported that money or insurance problems contributed to stopping treatment. For people managing chronic conditions requiring consistent care, even modest cost-sharing can disrupt treatment continuity with serious downstream consequences for both personal health and public health goals.
Why This Matters for People Living with Chronic Conditions
The evidence on cost-sharing and health outcomes should inform how we evaluate any compromise. The Commonwealth Fund's 2023 Health Care Affordability Survey found that 37% of marketplace enrollees reported delaying or skipping needed care due to cost in the prior 12 months. Among those who delayed care, 61% said a health problem got worse as a result. One-third of marketplace enrollees reported paying off medical debt.
These affordability challenges fall disproportionately on certain communities. The Center on Budget and Policy Priorities notes that 23% of Black enrollees and 18% of Hispanic enrollees in private insurance reported problems paying medical bills, compared to 15% of white enrollees.
For people living with HIV, coverage continuity directly affects health outcomes. The NIH Clinical Guidelines emphasize that "health insurance and prescription drug coverage can directly affect clinical outcomes for people with HIV; changes to coverage can result in lapses in viral suppression and should be anticipated as best possible." The guidelines specifically warn that disengagement from care occurs more frequently during transitions in coverage, including when people switch insurance plans or experience changes in employment status. With wholesale acquisition costs for commonly prescribed single-tablet antiretroviral regimens ranging from approximately $2,800 to $4,700 per month, the stakes of coverage disruption are substantial.
As CANN's December analysis detailed, New York City's 2024 HIV surveillance data showed diagnoses rising for the fourth consecutive year, with 86% of new diagnoses among Black or Latino people and 48% of those interviewed lacking health insurance. The Ryan White HIV/AIDS Program and AIDS Drug Assistance Programs (ADAPs) provide critical safety net support, but these programs work best when complementing stable insurance coverage rather than substituting for it.
The KFF analysis of proposed Medicaid cost-sharing requirements offers a window into what happens when cost barriers are introduced for vulnerable populations. Under a maximum cost-sharing scenario, Medicaid expansion enrollees with three or more chronic conditions could face average annual costs of $1,248—potentially exceeding the 5% of income cap for those at 100% of the federal poverty level.
What Comes Next
Any Senate deal requires 60 votes to overcome a filibuster, meaning at least seven Democrats must join all 53 Republicans, or significant bipartisan support must materialize. Sen. Moreno has indicated he needs 35 Republican senators on board to feel confident in the level of GOP support. Senate Majority Leader John Thune has said any deal must get a "big vote" among Republicans.
The political calendar adds pressure. The January 30 government funding deadline looms, and neither party has appetite for another shutdown after last fall's 43-day standoff. An extended open enrollment period would likely accompany any deal, giving people who dropped coverage due to premium spikes a chance to re-enroll.
For advocates, the coming days demand close attention. The specific legislative text—particularly provisions around minimum premiums, income verification, and any changes to covered services—will determine whether a compromise actually improves access or introduces new barriers. Contact your Senators to emphasize that affordability must remain central to any reform. Monitor for the final text expected early next week. And prepare to help community members navigate an extended enrollment period if one materializes.
The enhanced subsidies enabled record ACA enrollment of 25.2 million in early 2025, according to KFF data. What happens in Congress over the next two weeks will determine whether that progress holds or unravels, and whether the people who depend on affordable coverage can continue accessing the care they need.
The Only Thing That Stays The Same… Welcome to 2026
I want to personally thank those of you who joined me in finishing the sentence that is this week’s blog title.
For CANN and many of our colleagues and partners, 2025 was indeed the year of significant change. From government institutions being shook to their core—a near unprecedented challenge to our societal agreements on “fact”—to our dedication to issues and community through education and growth, who we are today is not who we were on January 1, 2025. And, despite what reflection of harder and more stressful moments might tell us, that change is not necessarily a bad thing.
2026 greets CANN, as an organization, with our own evolution: even as we seek to evolve the policy landscape and our partners to be patient-focused in an ever-increasingly tangible way.
CANN’s growth means permanent work for some of our contractors, allowing for incredible investments in three astounding individuals and their continued development as trend setters and thought leaders. Along with conversion to employee status, Ranier and Kalvin’s roles are expanding to leverage their state-based successes and networks to include federal policy education and advocacy. Travis’s expanded position will find him focused on ensuring CANN’s image is uniform, polished, and properly presented to the world at large. Our friends at Perry Communications are continuing as collaborators in shaping the advocacy ecosystem as patient-driven without fear or favor to the influences impacting access to care.
Our community investments are also growing and evolving in exciting ways. Later this year, CANN will share details on our re-vamped Community Roundtable events and how the “PDAB Summit” will transform into a broader conversation on patient access, drug pricing, and necessary reform and regulation. This discourse will offer real solutions that serve patients rather than simply catering to the next round of shady middlemen or market manipulating investors.
Growth and change is never all easy. The nature of evolution often demands the…unfamiliar.
After twelve years of service to CANN, Brandon Macsata will be moving on to focus on his work with ADAP Advocacy and PlusInc. After coming on to assist CANN’s founder, Bill Arnold, with restructuring the organization in 2014, Brandon continued to shepherd the organization through Bill’s death, including recommending me to the Board as successor CEO. Brandon’s contributions to CANN are immeasurable and we’re grateful for his care in helping us get to here.
This year is CANN’s 30th anniversary and much like any person turning thirty years old, we’ve been steadily evaluating our role, our knowledge, and our power to positively effect change. In 2025, we issued four $10,000, low-barrier advocacy grants to state-based and national partner organizations working on our shared issues from different perspectives. These organizations, Lupus Colorado, Aging and HIV Institute, Pharmacists United for Truth and Transparency, and Epilepsy Alliance of Louisiana, share our mission to define the issues impacting patient access to care across all health conditions and regardless of a patient’s socio-economic status, race, sex or gender, religion, geography, or their health history. We learned from these organizations about services they offer, treatment development pipelines, perspectives on navigating care coverage across programs, challenges in keeping local pharmacy doors open, and how providers, even in schools, can refuse to administer life-saving medication to a child experiencing a seizure simply because they are uncomfortable with the medication determined to be the standard of care. We shared our perspectives on messaging and leveraged our experience in HIV exceptionalism to navigate policy change and demand equitable care for our shared communities.
Because the reality is that HIV is losing its exceptional nature in the policy realm. While our programs remain alive—and, frankly, as of yet still funded—our support systems and our integration into broader, more generalized care as a manner of ensuring actual access for people living with HIV (those systems and changes for which we’ve advocated), are under threat by short-sighted, single-issue discussions. Advocacy organizations who have collected money over the years without innovation or growth will continue to labor without producing results and at the expense of true change-makers. Those who expect to proceed according to their own status quo, mired in bureaucracy, the successes of the past, and without authentic coalition-building will atrophy. Again, that’s authentic coalition-building: as I’ve shared over the years, “we must find friends”. And I don’t mean transactional friends (i.e., “If you sign this letter, I’ll sign yours”), but rather real relationships built in a slower manner that develops attachment without expectation of specific action, and instead deep enough care to show up when a call is made.
This goes beyond our community partners. Our industry partners are facing much the same conversation about the therapeutic areas they invest in and their alliances with advocates. What does it mean to be more than funders? What does it look like to fundamentally transform the patient advocacy ecosystem through stabilizing investments? What does it mean to support incubator models of advocacy? How does this impact or otherwise become integrated into a company’s business model? The answers to these questions are not static and they are far beyond any quarterly stockholder assessment, and our partners know this.
Advocates, for our parts, must be responsive to a rapidly-changing environment where those most confident in their proposed “solutions” are only having half the conversation on a single-issue within a larger web of issues, networked in a complex chain reaction of impacts. The consequences of policymakers—state and federal—suffering from “tunnel vision” or engaging in cheap, inaccurate, and deceptive talking points are manifesting in readily foreseeable conflicts making their way through expensive and unnecessary legal battles at the expense of tax dollars and patient quality and affordability of care.
We can do better than this. As HIV advocates, we know how to leverage historical challenges into future successes. We know how to seek out the unforeseeable and to respond to clever callousness. We have an obligation to share this knowledge and empower partners across the country to achieve what we have and, in doing so, to save our own investments from today’s threats.
2026 requires a paradigm shift from institutional comfort to nimble, responsive, powerful advocacy.
The changes 2025 brought us will be the continued challenges of 2026. To which the answer must be “We can.” (…CANN)
How Lupus Colorado and CANN Built an Advocacy Powerhouse
Some partnerships start with a formal strategy session. Ours began with a simple realization. People living with lupus and people living with HIV or viral hepatitis face many of the same obstacles when they try to get the care they need. Once we recognized that shared landscape, the connection between Lupus Colorado and the Community Access National Network (CANN) started to feel not only natural, but necessary.
CANN’s mission is to define, promote, and improve access to healthcare services and supports for people living with HIV and people living with viral hepatitis. The focus is on keeping care affordable and within reach for people no matter where they live, what they earn, or how they are insured. As soon as we spent time together, it was clear how much that mission speaks to the lived reality of people living with lupus. Many in our community depend on the same safety net programs, the same specialty pharmacies, and the same policies that protect medication access for people with chronic conditions nationwide.
Once we began sharing stories, the overlap came into full view. We heard about people living with lupus who rely on the 340B Drug Pricing Program to keep their treatment affordable. We heard about people managing both lupus and other long term conditions who face the same hurdles that people living with HIV or hepatitis encounter when insurance rules change or formularies shift. We also heard how uncertainty about programs like the 340B Program or state efforts to set Upper Payment Limits through bodies like the Colorado Prescription Drug Affordability Board creates stress and confusion for everyone who counts on steady access to treatment. The policy language may sound technical, but the effects show up in daily life. That shared experience became the spark that brought our organizations together.
Lupus Colorado eventually became a kind of testing ground for patient engagement around these issues. When debates surrounding 340B and the state board intensified, we invited our community to learn more and speak up. People living with lupus stepped forward with thoughtful questions about what these changes might mean for their medications and their stability. They shared stories about years spent finding the right treatments. They talked about the worry that comes with not knowing whether a familiar pharmacy or discount program will still be available. Their honesty helped shape a clearer picture of what access really means for people with chronic conditions.
CANN supported this work by offering context, training, and a strong national network. Their experience showed us how these local conversations fit into broader public health goals, including ongoing efforts to build sustainable systems for people living with HIV and long term strategies for hepatitis C elimination. They also helped amplify our stories by connecting them to advocates, policymakers, and public health leaders who are working to protect and expand medication access nationwide.
As we continued working together, the partnership grew into something that felt like friendship and, at times, even family. It surprised all of us how quickly Louisiana and Colorado began to feel connected through shared purpose and shared energy. This work is deeply personal, and when good people come together with the belief that collaboration, not competition, brings out our strongest work, something close to magic begins to take shape. My curiosity and strategic thinking blended naturally with Jen’s mentorship and policy insight. Kalvin and Ranier added necessary context for any variety of issues we shared and even accompanied me to some meetings to ensure Lupus Colorado's interests were well-defined for our audience. Together we created a combination that strengthened every effort that followed.
This collaboration also changed how advocacy feels for many people. Instead of seeing policy as something decided far away, our community began to see it as something they can influence. When people speak about their lives, policymakers listen differently. The technical language becomes human. The stakes become easier to understand. And the entire conversation shifts toward solutions that protect access rather than limit it.
The partnership between Lupus Colorado and CANN has shown us that when organizations connect around shared purpose, everyone benefits. We bring different histories and different areas of expertise, but we are united by our commitment to ensure that people living with chronic conditions can access the care they need without fear or financial hardship. Our collaboration continues to strengthen advocacy networks, uplift patient voices, and support progress toward public health goals that matter to all of us.
Most of all, this partnership reminds us that no one faces this journey alone. When communities work together, even unlikely collaborations can grow into something powerful enough to spark change.
Policy Failures, Not Fate: Inside 2025’s Health-Care Unraveling
As 2025 draws to a close, the American healthcare safety net finds itself fraying at multiple seams simultaneously. The enhanced Affordable Care Act (ACA) premium tax credits are set to expire on December 31, threatening to more than double out-of-pocket premiums for 24 million Americans. HIV care infrastructure has been deteriorating for months through administrative obstruction, and new data shows progress on ending the epidemic has stalled. State-level drug pricing experiments continue advancing on unsound foundations while federal policy casts an uncertain shadow over pharmaceutical access.
These crises share a common thread: they result from policy choices, not external forces. The Kaiser Family Foundation (KFF) estimates that average ACA out-of-pocket premium payments will increase by 114% if enhanced subsidies expire. New York City's latest surveillance data shows HIV diagnoses rising for the fourth consecutive year. The interconnected nature of these programs means each failure amplifies the others, and the decisions Congress makes in the coming days, and how states respond in the coming months, will determine whether 2026 brings stabilization or acceleration of these access crises.
The ACA Subsidy Showdown
As of this writing, the Senate is scheduled to vote on Thursday, December 11th, on the future of enhanced premium tax credits, and according to Politico, “all proposals appear doomed.” Senate Minority Leader, Chuck Schumer, announced Democrats will push a “clean” three-year extension: "This is the bill, a clean three-year extension of ACA tax credits, that Democrats will bring to the floor of the Senate for a vote next Thursday, and every single Democrat will support it. Republicans have one week to decide where they stand."
The measure requires 60 votes to overcome a filibuster, meaning 13 Republicans would need to cross the aisle. That support is not expected to materialize, as Republicans remain fractured between those who prefer inaction, those insisting on conservative overhaul, and those worried about the political consequences of rising premiums amid the quickly coming midterm fights.
President Trump was poised to release a framework last month extending the subsidies temporarily with income caps at 700% of the federal poverty level and minimum premium requirements. He backed down after some Republican lawmakers insisted any extension restrict ACA plans from covering abortions and include more conservative changes. Majority Leader John Thune acknowledged the abortion issue is "a difficult and challenging one on both sides." The Hydr amendment already forbids federal funds being used to subsidize abortions.
Several competing Republican proposals have emerged, though each carries significant implications for cost and access. Senate Health, Education, Labor and Pensions (HELP) Committee Chairman Bill Cassidy (R-La.) wants to redirect enhanced subsidies to health savings accounts tied to bronze-level plans with higher deductibles. The approach would shift costs from premiums to out-of-pocket expenses rather than reduce them, and HSA rules, as they currently stand, prohibit using funds to pay premiums. For people with chronic or complex health conditions requiring consistent care, high-deductible plans create significant barriers: annual HIV medication costs alone range from $36,000 to $48,000, and KFF research shows each $1,000 increase in out-of-pocket costs correlates with decreased medication adherence.
Sen. Rick Scott (R-Fla.) has proposed "Trump Health Freedom Accounts" that could be used to pay premiums, though funding levels and eligibility thresholds remain unclear. Sen. Josh Hawley (R-Mo.) has floated allowing people to deduct up to $25,000 in medical expenses from their taxes, but as a deduction rather than a credit, this approach disproportionately benefits higher earners and does nothing at the point of purchase for people who cannot afford premiums upfront.
Neither of these proposals address the systemic issues driving up the costs of premiums, like pharmacy benefit managers (PBMs) vertically integrated with their own solely owned pharmacies or the plan that are supposedly contracting with them. Directly, PBMs are setting their own prices to justify higher costs across the board with limited to no transparency or accountability. Changing which hands money comes from would not change this dynamic but it could potentially make it harder to track the source of these cost pressures.
A bipartisan group of 35 House members released a two-year extension proposal retaining enhanced subsidies for people earning up to 600% of the poverty level, with reduced amounts up to ten times the poverty level. But only about 15 Republicans have signed on, far short of the majority-of-the-majority threshold typically required for leadership to allow a floor vote. "I have 40,000 people in my district who rely on this health care and doing nothing to prevent a spike in their premiums is wrong," said Rep. Jen Kiggans (R-Va.), who won reelection last year by less than four percentage points.
The real-world consequences are already materializing. Blue Cross Blue Shield of Michigan reports a 20% spike in call center volume from members facing premium increases. KFF polling found that 58% of ACA enrollees said they couldn't afford a $300 annual increase without significant disruption to their household finances. Yet 72% of Republican ACA enrollees favor extending the enhanced subsidies, as do the same share of MAGA supporters with marketplace coverage.
HIV Programs: Rising Cases Meet Proposed Cuts
As we documented in November, the HIV care system experienced systematic disruption throughout 2025 through administrative obstruction and funding delays, independent of any congressional budget action. The question now is what 2026 holds, and early signals are troubling.
New York City's annual HIV surveillance report, released last week, showed 1,791 new HIV diagnoses in 2024, representing a 5.4% increase from 2023. This follows a 6.9% increase from 2022 to 2023, meaning new diagnoses have increased or remained stable for four consecutive years. Acting Health Commissioner Dr. Michelle Morse noted that "this progress has stalled as new diagnoses have increased or remained stable for the fourth year in a row while lifesaving federal funding for ending the epidemic is in jeopardy."
The federal threat is concrete: New York City would lose more than $41 million for HIV research, treatment, education and services if the proposed closure of the Centers for Disease Control and Prevention's (CDC) Division of HIV Prevention is approved. Nationally, the House Appropriations Committee's FY2026 bill would eliminate approximately $1 billion in CDC HIV prevention funding and cut the Ryan White HIV/AIDS Program by $525 million.
Members of the Presidential Advisory Council on HIV and AIDS (PACHA) released a letter last week urging the White House and Congress to protect funding, warning that "without continued investment, progress toward ending the HIV epidemic will stall, cases will increase again, and the health of Americans will suffer." Multiple PACHA members told ABC News the council has not met this year, raising questions about its ability to carry out its advisory role. The White House dismissed the council as "a largely symbolic body" engaged in "another useless PR exercise."
The NYC data underscores who bears the consequences of policy failures: 86% of people newly diagnosed with HIV in 2024 were Black or Latino, with 42% living in high-poverty neighborhoods. Among those interviewed by the health department, 48% lacked health insurance.
340B and PBM Reform: Rare Bipartisan Ground
Amid partisan gridlock on coverage questions, 340B Drug Pricing Program and pharmacy benefit manager (PBM) reform showed rare bipartisan momentum in 2025. The October HELP Committee hearing on 340B produced unusual agreement across party lines, with Chairman Cassidy noting that "340B should be about making drugs more affordable, not a line item on an investor call."
CBO's September 2025 analysis confirmed what patient advocates have argued for years: the program expanded 565% from $6.6 billion in 2010 to $43.9 billion in 2021, with two-thirds of this growth stemming from covered entity and third-party behaviors rather than pharmaceutical price inflation. The recently reintroduced 340B ACCESS Act represents the first comprehensive federal response to these documented abuses.
CANN's Director of 340B Policy Kalvin Pugh anticipates reform momentum will continue: "Next year begins several HRSA changes to 340B. I anticipate continued movement in Congress to try to realign the now second largest drug discount program to its original intent. I also anticipate continued efforts on the state level as large hospital systems and other margin motivated players will look for other ways to extract value from 340B."
On PBMs, the Federal Trade Commission's January 2025 interim staff report documented that PBM-affiliated pharmacies extracted over $7.3 billion in revenue above estimated acquisition costs on 51 specialty generic drugs between 2017-2022. The report's unanimous approval by FTC commissioners reflected the undeniable nature of these practices, yet the failure to enact meaningful federal PBM reform demonstrated that industry lobbying power remains formidable.
Support for these reforms has existed for some years and has been growing but has thus far stalled. How much these reforms will remain prioritized in a midterm election year, again, remains a question.
State Experiments and Federal Shadows
State Prescription Drug Affordability Boards (PDABs) continued their problematic trajectory in 2025. Colorado and Maryland, the two states furthest along in setting Upper Payment Limits (UPLs), are basing their limits on federal Maximum Fair Price (MFP) without conducting thorough cost-benefit analyses or assessing potential adverse system outcomes.
CANN's Drug Pricing Policy Director Ranier Simons offered a pointed assessment: "As 2025 comes to a close, PDABs remain expensive experiments built upon unsound foundations with nebulous projections of incalculable benefits. As state PDABs and other entities lean into equally untenable federal actions the outlook for positive change in 2026 is not promising."
Simons additionally warned that while the appetite for PDABs may be fading, it is likely to be replaced by legislative bully behavior or legislatures attempting to pass direct MFP bills, foregoing the facade of the Boards themselves.
The federal Most Favored Nation (MFN) executive order signed in May 2025 has since evolved into TrumpRx, a direct-to-consumer website set to launch in 2026. The administration has announced deals with five manufacturers, including Pfizer, AstraZeneca, and Novo Nordisk, touting discounts averaging 50% and reaching as high as 85%. The framing as "MFN pricing" is generous. TrumpRx functions as a cash-pay portal where consumers bypass insurance to purchase directly from manufacturers. The 92% of Americans with health insurance likely won't benefit, since purchases don't count toward deductibles or out-of-pocket maximums, and insured consumers often pay less through their pharmacy benefit. I-MAK CEO Tahir Amin called it "political theater" that won't deliver "substantial savings for the government or patients," noting that pharmaceutical stocks rose after the announcements. The specific terms of manufacturer deals remain confidential, making it impossible to verify whether "MFN prices" for Medicaid will actually be lower than the rebated prices Medicaid already receives under existing federal law. Medicaid is already guaranteed the lowest market cost on medications under the “best price” rule.
As we analyzed in August, true MFN pricing tied to international benchmarks risks importing discriminatory QALY-based frameworks. TrumpRx sidesteps that concern by avoiding genuine price regulation altogether.
Utilization Management: The Quiet Expansion
While coverage debates dominate headlines, a less visible threat to medication access is accelerating: the expansion of utilization management (UM) tools by both public and private payers. The U.S. drug utilization management market reached $39.82 billion in 2024 and is projected to more than double to $82.07 billion by 2034.
The Inflation Reduction Act's Part D benefit redesign creates new incentives for expanded UM. With Part D plans now responsible for 60% of costs in the catastrophic phase (up from 15% in 2023), plans face financial pressure to restrict access through step therapy, fill limits, and prior authorization requirements. The Medicare Payment Advisory Commission found that Part D and Medicare Advantage plans now apply some form of utilization management to more than half of drugs on their formularies. In June, a coalition of 60 patient advocacy organizations wrote to CMS Administrator Dr. Mehmet Oz warning that "restrictive cost-control measures can delay or prevent beneficiaries from accessing necessary treatments."
CMS is currently engaged in investigations on Medicare Advantage Plans abusing UM practices to deny care. Because these abuses are so well-know, the agency's proposal to adopt these practices for traditional Medicare might seem hypocritical, if not foretelling.
Payers are increasingly deploying AI to automate these decisions. A Bain & Company survey found that approximately 80% of payers now have an AI strategy in place or in development, with prior authorization automation among the top use cases. Industry analysts frame this as reducing "administrative gridlock," but the concern for patients is that automation makes it easier to deny care at scale. A 2024 American Medical Association survey found that 93% of physicians reported prior authorization led to delays in necessary care, and 82% said the process can lead patients to abandon their recommended treatment. For people managing HIV, cancer, and other chronic conditions, automated denials represent a new front in the fight for treatment access that demands sustained advocacy attention in 2026.
The Crossroads of 2026
The policy decisions of the coming days will shape healthcare access for years. Lawmakers increasingly view January 30, the next government funding deadline, as the real cutoff for a healthcare deal if Thursday's vote fails. If ACA subsidies expire, KFF projects marketplace enrollment dropping from 22.8 million to 18.9 million in 2026 alone.
Looking further ahead, Medicaid work requirements under H.R. 1 take effect January 2027, requiring adults ages 19-64 to complete 80 hours monthly of approved activities to maintain coverage. Planning for that implementation begins now.
GOP strategist Jason Cabel Roe captured the political bind: "This is an issue we've been railing on for how many years? And now, all of a sudden, we have to deal with it, and there are no good proposals right now to get us out of this. If we don't fix it now, we risk letting Democrats fix it later, and we're not going to like that fix."
Whether Congress finds pragmatic solutions or continues partisan paralysis will determine whether 2026 brings relief or deepening crisis for the millions of Americans whose healthcare access hangs in the balance.
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.
The HIV Care System Is Breaking Before Congress Even Cuts It
In October 2025, the Emergency HIV Clinical Response Task Force surveyed 526 HIV clinicians across the United States. Seventy percent reported service disruptions affecting their patients, with the Midwest and South hit hardest at 77% and 71%. Gender-affirming care topped the list of disrupted services at 33%, followed by housing support at 26% and PrEP or PEP access at 25%. Transgender people and immigrants bore the heaviest impact, with 41% and 38% of clinicians reporting these populations were most affected.
These numbers tell an important story, but not the one many headlines suggest. The disruptions in this survey are not the result of Congressional budget cuts to HIV programs. No legislation has eliminated Ryan White HIV/AIDS Program funding or CDC prevention dollars. Instead, they stem from administrative actions, grant recissions, and bureaucratic obstruction that destabilized HIV services months before Congress debated any cuts at all.
That distinction matters. It reveals how vulnerable the HIV care infrastructure has become, and how much worse things could get if proposed eliminations of HIV programs and broader healthcare funding cuts move forward.
The Administrative Stranglehold
The current disruptions trace directly to Office of Management and Budget Director Russell Vought’s systematic manipulation of the federal budget process. Before joining the Trump administration, Vought outlined these tactics in Project 2025, describing how “apportioned funding” could “ensure consistency with the President’s agenda.” He has executed this strategy with surgical precision.
Rather than releasing appropriated funds to agencies like the Centers for Disease Control and Prevention (CDC) in standard apportionments, Vought shifted to monthly releases requiring Department of Government Efficiency (DOGE) review for every grant award. By August 2025, the CDC’s center for HIV and tuberculosis prevention had spent $167 million less than historical averages, the Ryan White Program underspent by $105 million, and mental health funds at the Substance Abuse and Mental Health Services Administration lagged by more than $860 million.
The money exists. Congress appropriated it. Administrative roadblocks are what prevent it from reaching clinics, health departments, and community organizations.
The human cost is visible in provider reports. When funding delays hit in July 2025, 81 HIV organizations wrote to HHS Secretary Robert F. Kennedy Jr. warning that “with every day of delayed FY2025 funding release, the delivery of essential HIV services is compromised.” Clinics laid off case managers, reduced clinician hours, closed sites, and scaled back hotlines. The funds eventually arrived about a month later, but the damage—to staff capacity, patient trust, and continuity of care—was done.
At St. John AIDS outreach ministry in New Orleans, program director Tamachia Davenport faced a choice: cut staff or cut supplies when CDC funds did not arrive on time. To keep staff from fleeing to more stable jobs, she stopped buying condoms the organization distributes to prevent sexually transmitted infections—despite Louisiana’s already high rates of HIV, chlamydia, and gonorrhea, and the fact that condoms cost far less than treating any of them.
One CDC official summarized the view from inside: “Everyone’s inbox is full of letters from grant recipients asking, ‘How do we proceed?’ We just say, ‘Please wait.’”
Robert Gordon, a public policy specialist at Georgetown University and former assistant finance secretary at HHS, described the strategy plainly: “This is a sophisticated strategy to cause money to lapse and then say, ‘If they can’t spend it, they don’t need it.’”
The Unlegislated Threat
While administrative actions create the current disruptions, proposed legislation in Congress represents a qualitatively different threat.
In September 2025, the House Appropriations Committee released its FY2026 funding bill eliminating all CDC HIV prevention funding—approximately $1 billion—and cutting the Ryan White HIV/AIDS Program by $525 million, or 20%.
The bill does not merely trim budgets. It eliminates program components entirely. Ryan White Part F, including AIDS Education and Training Centers, the Dental Reimbursement Program, and the Minority AIDS Initiative, would disappear. The $220 million for the Ending the HIV Epidemic initiative would be eliminated. Direct grants to more than 400 HIV clinics providing care and treatment through Ryan White Parts C and D would end.
Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, summed up the stakes: “This is not a bill for making America healthy again, but a disastrous bill that will reignite HIV in the United States.”
The Senate tells a different story. In July 2025, the Senate Appropriations Committee advanced a bipartisan bill that maintains flat funding for all parts of the Ryan White Program ($2.57 billion), level funding at $220 million for Ending the HIV Epidemic, and flat funding for CDC HIV prevention. The contrast could not be clearer.
Researchers at Johns Hopkins Medicine modeled what would happen if federal funding for Ryan White ended. Their study in the Annals of Internal Medicine projects 75,436 additional HIV infections through 2030, a 49% increase. As senior author, Dr. Todd Fojo noted, effective treatment is the most powerful form of HIV prevention.
No final FY2026 budget has been enacted. The government is operating under a continuing resolution, and the gap between House and Senate proposals is unresolved. But the threat is not hypothetical, and the clinician survey’s forward-looking data reflects it: 72% anticipate moderate or significant service disruptions in the next 6–12 months, rising to 77% for the following 12–18 months.
The Broader Ecosystem Under Siege
The clinician survey captures disruptions to direct HIV services, but not the compounding pressures from Medicaid restructuring that threaten both coverage for people living with HIV and the financial stability of AIDS service organizations.
The One Big Beautiful Bill Act, signed July 4, 2025, reduces Medicaid expansion eligibility from 138% to 100% of the federal poverty level, affecting an estimated 200,000 people with HIV. This is not a marginal tweak: 40% of non-elderly adults with HIV rely on Medicaid, nearly three times the rate of the general population. Starting in 2027, adults ages 19–64, captured under the Affordable Care Act’s Medicaid expansion, must complete 80 hours per month of approved activities to maintain coverage, and semi-annual eligibility redeterminations will replace annual reviews, injecting churn into programs where uninterrupted access to antiretroviral therapy is a clinical requirement, not a luxury.
Program eligibility recertification as an administrative burden on patients and otherwise a deterrent to staying enrolled in a program is something Ryan White clients are exceedingly familiar with. Recall, in 2021, under a Policy Clarification Notice (PCN 21-02), historical 6-month recertification requirements were relaxed in order to facilitate keeping eligible clients in care and not losing patients to care because of paperwork burdens. Medicaid work requirements as described in HR1 are the exact opposite of this best practice.
Taken under another lens, many AIDS service organizations converted to Federally Qualified Health Center (FQHC) status after the Affordable Care Act to serve newly insured patients and stabilize revenue. Medicaid comprises 43% of FQHC revenue. The OBBBA cuts into this income through provider tax caps that ratchet down over time and by capping state-directed payments at 100% of Medicare rates in expansion states. At the same time, the Congressional Budget Office projects 7.8 million people will lose Medicaid coverage overall. Enhanced ACA premium tax credits expire at the end of 2025, and so far Congress has not extended them.
As Davenport of St. John AIDS outreach told KFF Health News, “A lot of us are having to rob Peter to pay Paul.” But what happens when Peter gets defunded? Maybe the “Good Christians” in the halls of Congress can tell us.
Another angle of “robbing Peter”, is state expansion of 340B by way of allowing Medicaid providers to opt for any given claim under the 340B program, rather than forcing the claim through Medicaid. In these scenarios, the provider benefits the most from 340B discounts while robbing the state’s Medicaid program of possible Medicaid Drug rebates because no single claim may receive both. One report tied this Medicaid divestment to the tune of $1.2 billion annually. A novel consideration might be stabilization of Medicaid programs and payments by way of disallowing the option of 340B claims and requiring those claims be passed through a state Medicaid program. Maximizing Medicaid’s re-investment opportunity stabilizes both state budgets and the payment ecosystem for qualified healthcare entities.
Ground Truth: What’s Happening Now
Local decisions layered on top of federal obstruction are already shutting people out of care. Institutional brain trust and community trust in those same institutions is easy to lose and hard to recover.
In Mecklenburg County, North Carolina, the public health department laid off six workers, including half its disease investigators, when HIV prevention and surveillance grants expired at the end of May with no information about future funding. The grants were restored a month later, but only half the positions were refilled. “So now we’re behind, and cases are still being reported every day that have to be investigated,” said director Raynard Washington.
In Dallas County, Texas, public health director Philip Huang waits for nearly 30% of the promised award for emergency preparedness with no timeline or clarity, making basic staffing decisions feel like a gamble.
Breanne Armbrust, executive director of Richmond’s Neighborhood Resource Center, summed up the cumulative burden on patients: “They’re already sick or in need of care and asking them to do one more thing when their acuity levels might be high is too much, and it’s unreasonable.”
The Warning We Cannot Ignore
The clinician survey documents disruptions caused by administrative obstruction at a time when HIV programs still technically have appropriated funding. It is a snapshot of a system that is already unstable.
If the House FY2026 proposal eliminating CDC prevention funding and cutting Ryan White by $525 million becomes law, these disruptions will not simply “increase,” they could scale into system failure. Each new HIV infection carries an estimated at least $501,000 in lifetime healthcare costs. The Ryan White Program in 2023 achieved a 90.6% viral suppression rate among 576,000 clients. These programs work. Dismantling them would reverse decades of progress in a matter of years.
The workforce crisis compounds the threat. The United States needs 1,500 additional HIV specialists to reach 90-90-90 benchmarks. The South already has only 8 providers per 1,000 people with HIV, compared with 11 nationally. Counties that have reached at least one 90-90-90 target have 13 providers per 1,000. Eliminating AIDS Education and Training Centers, as the House bill proposes, would deepen that shortage just as demand for services intensifies.
None of this is theoretical. Administrative sabotage is already cutting off care people depend on to stay healthy, alive, and connected to treatment. Layer a legislative funding strike on top of a system this fragile, and the outcome is entirely predictable: preventable infections, preventable deaths, and preventable suffering concentrated among people already pushed to the margins.
Federal Policy Changes Threaten to Overwhelm ADAPs
Established in 1987, AIDS Drug Assistance Programs (ADAPs) were the first federally supported initiative to help states purchase AZT (zidovudine), then the only approved antiretroviral drug available for people living with HIV (PLWH). When Congress enacted the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act in 1990, ADAPs were formally incorporated into what would become the Ryan White HIV/AIDS Program. Nearly forty years later, these programs remain the backbone of HIV treatment access in the United States, supporting medication coverage for those without affordable insurance options and sustaining the nation’s viral suppression gains.
That foundation is now under strain. A series of converging federal policy changes threatens to unravel the safety net that ensures continued access to lifesaving HIV treatment.
The One Big Beautiful Bill Act, enacted July 4, 2025, combined with the expiration of enhanced ACA Premium Tax Credits on December 31, 2025, and proposed federal funding reductions for Fiscal Year 2026, have created what NASTAD describes as "an unprecedented fiscal storm." The Congressional Budget Office estimates that H.R. 1, combined with the end of enhanced Premium Tax Credits, will leave 14.2 million more Americans uninsured by 2034. Another 750,000 to 1.8 million Marketplace enrollees are projected to lose coverage under the 2025 Marketplace Integrity Rule.
For ADAPs, the timing could not be worse. NASTAD data show ADAP enrollment increased 8 percent between 2019 and 2023, with new enrollment rising 28 percent and prescription drug expenditures up 10 percent. Program administrators are already managing cost growth, changing insurance landscapes, and expanding client need. The convergence of these federal shifts represents not a single budget gap, but a cumulative structural failure that could overwhelm the system responsible for sustaining treatment access for more than 270,000 people nationwide.
When the Safety Net Last Failed
The last major ADAP funding crisis, in 2010 and 2011, offers a clear warning. During that period, national ADAP waitlists grew from 2,937 to 9,217 people within twelve months, even after an emergency $25 million federal allocation. The consequences were immediate and measurable. Three deaths in South Carolina among people waiting for medication became a national call to action. Congress responded by reprogramming Ryan White funding and authorizing additional emergency allocations between 2010 and 2013, and waitlists were fully eliminated by 2017.
The difference today is scale and complexity. The current threat is not a temporary funding shortfall but a sequence of federal policy changes that simultaneously reduce insurance coverage, restrict Medicaid access, and diminish the resources available to offset those losses. Each component amplifies the pressure on ADAPs, narrowing every available safety valve.
The lessons from 2010 remain relevant. When the safety net fails, the consequences are measured not in spreadsheets but in treatment interruptions, declining viral suppression rates, and preventable deaths. Without urgent federal and state intervention, ADAPs face conditions that could produce a repeat of that crisis, magnified by broader systemic strain and political indifference.
Medicaid Work Requirements: Paperwork as Policy Weapon
H.R. 1 introduces the largest reduction to Medicaid in U.S. history, with nearly $1 trillion in cuts projected from 2025 through 2034. Beginning January 1, 2027, most Medicaid expansion adults will be required to document at least 80 hours of “qualifying activities” each month to maintain coverage. The Congressional Budget Office estimates that these provisions will result in 4.8 million more people losing coverage by 2034.
Research shows that two out of three enrollees who lose Medicaid under work requirement policies are already employed or qualify for exemptions. The result is not an increase in employment but a rise in administrative loss of coverage.
Arkansas’s 2018 work requirement experiment illustrates what lies ahead. More than 18,000 people lost coveragewithin months, primarily due to confusion and difficulties with the state’s online reporting system. Employment rates did not increase.
Nationally, about 10 percent of Medicaid renewals currently result in “procedural disenrollment,” meaning people lose coverage for paperwork reasons despite remaining eligible. H.R. 1 worsens this by requiring Medicaid enrollees to renew eligibility every six months instead of annually, doubling the opportunities for administrative failure.
For people living with HIV, Medicaid is a primary source of healthcare coverage. Nationally, approximately 40 percent of people receiving HIV care are enrolled in Medicaid. These provisions directly threaten treatment continuity by increasing administrative barriers and coverage interruptions. The legislation also reduces retroactive eligibility from three months to one or two months, raising costs for ADAPs that depend on retroactive reimbursement for medications dispensed while coverage applications are pending.
The Marketplace Affordability Cliff
The expiration of enhanced ACA Premium Tax Credits will create an affordability crisis for people living with HIV who earn too much to qualify for Ryan White services but depend on subsidized marketplace plans. KFF estimates that marketplace enrollees will see average premium payments more than double in 2026, increasing by 114 percent from $888 annually to $1,904. Approximately 1.5 million people earning above 400 percent of the federal poverty level will lose all subsidies entirely.
A larger share of people living with HIV receive marketplace coverage than the general population. For a 45-year-old in Miami-Dade County earning $38,000, annual premiums would rise by $1,699, from $117 to $259 per month. Given that antiretroviral therapy typically costs $36,000 to $48,000 annually and total healthcare expenses average $30,000, marketplace affordability is critical to maintaining viral suppression.
Insurers are building in additional premium increases of roughly four percent in anticipation of the subsidy expiration, assuming healthier enrollees will drop coverage and leave behind a sicker risk pool. Average Healthcare.gov plan premiums are projected to rise 26 percent for 2026. The Congressional Budget Office projects that the uninsured population will grow by 2.2 million people in 2026 alone without an extension of the tax credits, eventually reaching 4.2 million.
Federal Funding Cuts Compound the Crisis
While coverage losses increase, federal budget proposals for FY2026 would eliminate the very programs that support ADAPs and coordinated HIV care. The White House budget proposes a $74 million reduction to the Ryan White HIV/AIDS Program, lowering total funding to $2.5 billion by eliminating Part F programs that include the AIDS Education and Training Centers, dental programs, and Special Projects of National Significance.
The House Appropriations Committee proposes deeper reductions, eliminating $525 million in Ryan White funding, or roughly 20 percent of the program’s total. These cuts would affect more than 400 HIV clinics that provide medication, case management, and medical care nationwide.
The House proposal also eliminates the entire $1 billion budget for CDC HIV prevention, including $220 million for the Ending the HIV Epidemic initiative. The HIV+Hepatitis Policy Institute describes this as “not a bill for making America healthy again, but a disastrous bill that will reignite HIV in the United States.” The Foundation for AIDS Research projects that ending prevention funding alone could lead to 144,000 new HIV diagnoses, 15,000 deaths, and $60.3 billion in healthcare costs by 2030.
The Senate Appropriations Committee rejected these reductions by a bipartisan vote of 26–3, maintaining existing levels for domestic HIV prevention programs. This outcome offers temporary stability, but reconciliation between House and Senate versions remains uncertain.
Immediate Actions Required
The NASTAD analysis warns that the convergence of federal coverage losses and funding reductions could force ADAPs into crisis conditions reminiscent of 2010. While states can employ fiscal management strategies to delay the impact, the core solutions lie in federal policy.
Congress must extend enhanced Premium Tax Credits through at least 2027 to stabilize the individual marketplace and prevent subsidy loss for people living with HIV who rely on private coverage. Lawmakers should reject proposed eliminations of Ryan White Part F and CDC HIV prevention funding, which have produced measurable long-term savings by reducing new infections and sustaining treatment continuity. Maintaining these investments is far less costly than responding to the resurgence of uncontrolled HIV transmission.
States also play a central role. Strengthening coordination between Ryan White programs, ADAPs, and marketplace enrollment systems, as demonstrated in California and New York, can mitigate insurance disruptions and preserve treatment adherence during policy transitions.
NASTAD emphasizes that continuity of care must remain the guiding principle throughout any period of programmatic change. Ensuring uninterrupted access to medication, case management, and communication between providers and clients is critical to maintaining public trust and preventing viral rebound.
The intersection of these federal policies represents a defining test for HIV care in the United States. The ADAP crisis of 2010 showed that delay has a human cost measured in treatment lapses and preventable deaths. Policymakers again face a choice between sustaining a proven safety net or repeating the mistakes that history has already documented.
340B: Are Patients at the Table or on the Menu? Reflections on the HELP Committee Hearing on 340B
It was a busy few weeks for 340B in the nation’s capitol, on Thursday October 30th, The Health and Human Resources Administration (HRSA) announced it had approved nine drugs for its Rebate Model Pilot. Last Thursday October 23rd, the U.S. Senate Committee on Health, Education, Labor, and Pensions (HELP) Committee convened a full-committee hearing titled “The 340B Program: Examining Its Growth and Impact on Patients” to examine the rapid expansion of the 340B program and its implications for patients and taxpayers alike. For those who are working toward a reformed 340B program, this was a crucial moment: the program was created to help low-income and uninsured patients, yet representation at the witness table provided the glaring reminder, when we are not at the table, we are on the menu.
Good Intentions
The hearing was convened last Thursday following a broad investigative effort led by Louisiana Senator Bill Cassidy, M.D., Chairman of the HELP Committee, whose majority-staff report released in April 2025 laid bare serious transparency and oversight concerns in the 340B program, and the recent Congressional Budget Office’s report on the growth of the 340B program. At the hearing, Senators from both parties expressed strong support for reform of the program. Senators called for more transparency regarding how 340B revenues are used and how the program has grown far beyond its original intent. Chairman Cassidy’s opening remarks underscored the tension: “It’s a well-intentioned program … but people judge you by your actions, not your intentions.” He pointed to findings that as 340B has grown, so have health care costs.
Longstanding Issues Raised
The hearing began with a table of witnesses deemed as experts on the program’s inner workings and challenges: Michelle Rosenberg, U.S. Government Accountability Office, Aditi Sen, Ph.D., Congressional Budget Office, and William B. Feldman, MD, DPhil, MPH, University of California. All three witnesses' testimony reflected on the program's explosive growth, the challenges faced in 340B’s impact on spending at the federal level, its financial impact on state Medicaid programs, and the need for modern reform of legislation to bring it into the 21st century. In between partisan shots for screen time, witnesses and Senators highlighted:
Lack of transparency: The April report found that some large hospital systems generated hundreds of millions of dollars through 340B, yet could not clearly demonstrate that savings were passed directly to patients.
Program growth beyond original intent: The 340B program, established in 1992 to help safety-net providers stretch federal resources and serve more eligible patients, has grown to cover over 60,000 participating entities. That scale raises questions about whether the program still reflects its original purpose.
Cost-shifting and unintended consequences: The Senators flagged that the Congressional Budget Office found that 340B’s expansion “encourages behaviors … that tend to increase federal spending.”
Disconnect between revenue and patient benefit: The investigative report suggests that in many cases 340B revenue is being used for facility capital improvements or general operations rather than directly reducing out-of-pocket burdens for low‐income patients.
Contract pharmacy and administrative complexities: The role of contract pharmacies and third‐party administrators (TPAs) was called out for potential erosion of intended benefit, and the investigation recommends more scrutiny.
The Missing Witness
For all the laudable questioning of the program’s mechanics, what was striking at the hearing was the absence of direct patient voices. While policy makers, hospital executives, pharmacies and manufacturers were discussed, one would look in vain for the witness table to include someone whose story is the core rationale for 340B — a low-income patient trying to access a drug or services that otherwise would be out-of-reach.
This gap in experience in witnesses matters deeply:
Patients are the raison d’être of 340B. The statute allows eligible providers to purchase outpatient drugs at a discounted rate so they “reach more eligible patients and provide more comprehensive services.” If we cannot hear from those very patients, we risk losing sight of whether the program is delivering on its intent.
Policy without lived experience lacks accountability. Reforms that focus exclusively on revenue flows, auditing, definitions and transparency can overlook whether the end result is better access, lower cost, fewer barriers. The missing patient perspective means we lack insight into whether the “front-line” outcomes are improving.
Reform risks being mechanical, not human. If hearings remain focused on numbers (how many providers, how many dollars, what audits) and not on the personal hardship of people for whom drug access matters, then reform may fix the mechanics—not the mission.
While the hearing continued its focus to the numbers instead of patients, the need for transparency in light of various reports including the North Carolina Treasurer's report, the growing evidence of abuse such as Bon Secours Mercy Health, and how for-profit corporations have continued to siphon the 340B program’s value from it’s intended purpose, it made apparent the partisan divide of the issues, but the agreement that this program has lost it’s way and needs to be meaningfully reformed to ensure that the support of scarce federal resources this program provides is vital to the safety net.
Looking Forward
Thursday’s hearing was a meaningful spotlight on a program ready for reform—but it should not be the headline byline. The real story needs to be: how is 340B reaching patients, how are those patients faring? Reform should not just scrutinize how many dollars 340B moves; it must ask: How many patients paid less? How many accessed care they previously could not? And how many were left behind because the program has shifted focus away from them?
As we continue to experience the circus that is 340B policy in the coming weeks and months, we must insist that patient voices are at the table, not just provider executives and lobbyists. We must craft measurable guardrails that ensure 340B savings are not invisible dollars but tangible patient impact. And we must be unafraid to hold stakeholders accountable when the data show a disconnect between program growth and patient benefit. The 340B program is at a crossroads. Last week’s HELP Committee’s hearing signals that change is coming. We must focus that change so it works for the people, not just the institutions—and ensure we bring patient voices from the margins into the center of the conversation so it works for the people, not just the institutions—and ensure we bring patient voices from the margins into the center of the conversation.
Clade I Mpox Emerges as Public Health Capacity Collapses
Between October 14 and October 17, 2025, three California residents were confirmed with Clade I mpox, all requiring hospitalization, none vaccinated, none with international travel history. These represent the first known cases of community transmission of Clade I within the United States. The strain demonstrates case fatality rates of 3-10.6% compared to less than 0.2% for the Clade II virus that spread in 2022. All three cases occurred in Southern California. Health officials have found no epidemiological connections between them.
This was predictable. In May 2023, the Community Access National Network (CANN) cautioned against premature declarations of victory over mpox, warned that insufficient vaccine coverage among marginalized communities risked endemic transmission, and urged public health agencies to take community reports seriously rather than "paternalistically denying the potential or possibility of new outbreaks or breakthrough cases." Two and a half years later, the infrastructure to respond to those warnings has been systematically dismantled precisely when the more dangerous strain has arrived.
What We Failed to Build
Only 21-23% of at-risk populations nationally have received the full two-dose JYNNEOS vaccine series. This means 66-78% remain unvaccinated against a virus now spreading domestically. Even California, ranked third nationally with 43% of at-risk populations fully vaccinated, leaves more than half of vulnerable people unprotected. None of the three confirmed Clade I cases had been vaccinated.
The racial disparities are unchanged from 2022. As of April 2023, 77.9% of Black people in vaccine-eligible populations remained unvaccinated, despite experiencing mpox incidence 5.8 times higher than White people during the August 2022 peak. The vaccination-to-case ratio during the 2022 outbreak tells the story precisely: for every mpox case in a White male, 43 White males were vaccinated. For Black males, 9 were vaccinated per case. For Hispanic males, 17 per case.
JYNNEOS was added to CDC immunization schedules in October 2023. Most health plans have been required to cover vaccination without cost-sharing since January 1, 2025. Access improved. Utilization did not. Dr. Peter Chin-Hong of UCSF explained the gap: "They might have gotten the first shot back in 2022 when everyone was afraid, and people knew a lot of people who had it." As mpox faded from headlines, vaccination rates declined. Series completion rates remain at 64.5% in California. The consequence is massive population vulnerability to a virus significantly more dangerous than the 2022 strain, spreading now in the communities with the lowest vaccination coverage.
What We Are Dismantling
The federal government shutdown that began October 1, 2025, continues through October 22, now the second-longest in modern U.S. history. Only 37% of CDC staff continue working. Disease surveillance analysis has halted for certain diseases. Guidance to state and local health departments has been suspended. Communication lines are severely limited.
On October 10, approximately 600 CDC workers were cut when 1,300 employees received Reduction in Force (RIF) notices. These targeted staff in infectious disease programs, Laboratory Leadership Service, the CDC Library, chronic disease programs, global health initiatives, and health statistics. The entire CDC Washington Office was eliminated, destroying the agency's Congressional liaison capacity. Dr. John Brooks, former CDC Division of HIV Prevention official, explained the significance: "CDC has worked directly with Congress for decades to help constituents by providing data, expertise and insight when needed. These firings mean Congress no longer has a means of direct access to the agency it funds when it needs information or briefings."
This followed March 2025 HHS restructuring under Secretary Robert F. Kennedy Jr. that eliminated approximately 3,000 CDC positions, a 25% workforce reduction. The Morbidity and Mortality Weekly Report (MMWR) failed to publish for the first time in its 60-year history. Dr. Karen Remley, former CDC official and Virginia health commissioner, described the practical impact: "Sometimes that help might be sending some people to help you investigate this. Sometimes that might be talking to somebody who's the world's expert on a specific type of infection or exposure. Now, there's nobody to answer the phone."
The California Department of Public Health acknowledged: "The department continues to work with available staff at CDC, but the recent federal government shutdown and other actions at the federal level have added a layer of uncertainty to the current work environment." Joseph Osmundson, Clinical Associate Professor of Biology at NYU, stated it plainly: "The infrastructure we built during the 2022 outbreak has just been eviscerated. The very things we need to understand if we have a problem now, and if we will have a problem in the future, are being systematically dismantled."
What We Refused to Fix
Provider knowledge gaps documented in 2022 persist unchanged. A Johns Hopkins study analyzing 1,024 mpox tests across different clinical settings found anogenital examination performed in only 44.5% of emergency department visits and 40.4% of primary care visits, compared to 82.4% in infectious disease clinics. An HIV activist in New York's Hell's Kitchen reported in early 2023: "A number of my friends, as well as myself, if I'm being honest, have reported that their physicians are both unaware that reinfection with MPV [MPOX Virus] is possible and that infections can still occur in people who have been fully vaccinated, and as a result of their knowledge gap are refusing to test MPV lesions."
Spanish-language materials were not available until August 2022, three months into the outbreak. Technology-dependent scheduling systems requiring monitoring of health department social media accounts favored digitally connected populations. Uninsured patients were vaccinated significantly later than privately insured patients, 83 days versus 41 days. Three years later, these barriers remain unaddressed.
The vaccination disparities - 77.9% of Black people unvaccinated, 9 vaccinated per case compared to 43 per case for White people - reflect structural access failures compounded by medical mistrust rooted in documented sterilization programs, non-consensual experimentation, and systemic racism in healthcare delivery. As CANN documented in 2022, these historical harms manifest in current provider interactions: "Moral judgments are made, stories get told, patients are admonished and made to feel ashamed. The impacts of these behaviors, both short-term and long-term, can lead to patients refusing to seek testing or treatment." The barriers are known. The solutions are known. We have chosen not to implement them.
What Works and What We Abandoned
Community-based vaccination programs work. CDC's Mpox Vaccine Equity Pilot Program launched in September 2022 received 35 vaccination project proposals, with 22 completed projects administering 25,675 vaccine doses at targeted locations including Pride events and sexual health clinics. The program partnered with community-based organizations serving gay, bisexual, and other men who have sex with men and transgender people, used trusted messengers, and eliminated eligibility documentation barriers. It was proven effective. It was never scaled to address the 66-78% of at-risk populations who remain unvaccinated.
No real-world effectiveness data exists for JYNNEOS against Clade I. The vaccine is expected to provide protection based on its mechanism and animal studies showing 100% protective efficacy against death. But antibody levels wane significantly 6-12 months post-vaccination, dropping to levels at 12 months comparable to peak single-dose levels. Whether booster doses might be needed remains unresolved. CDC currently does not recommend third doses.
Epidemiological models suggest vaccination coverage above 50% is needed to prevent mpox outbreaks in high-risk populations. California's 43% falls short. Most states are far below that threshold. As CANN wrote in 2023: "If we are ever going to eradicate MPV in the United States, we are going to have to do a significantly better job of getting vaccine supplies to those most likely to be impacted and do a better job of overcoming the cultural and hesitancy barriers that exist in those communities."
The recommendations are unchanged because the problems are unchanged. Increase investments in mobile, pop-up, and community-based healthcare delivery. Provide culturally competent care that meets people where they are. Address provider knowledge gaps through comprehensive education. Eliminate technology-dependent barriers to vaccine access. Collect complete demographic data to track and address disparities. Hold health departments accountable for being "responsive, creative, and careful as community members and advocates identify potential cases and outbreaks."
The Choice We Face
These are early days of this outbreak. But the October 2025 California cases represent something no other country has reported: Clade I mpox transmission without international travel links. Sweden, United Kingdom, Germany, Thailand, Australia all successfully prevented community transmission when they detected imported cases through rapid surveillance, contact tracing, and adequate public health capacity. No wider community transmission occurred in any of these countries.
The California cases emerged during a 22-day federal shutdown, with CDC operating at 37% staffing. State health departments report "nobody to answer the phone" when they need federal expertise. Whether this degraded capacity contributed to these cases spreading undetected, or whether it will hamper efforts to contain them, remains to be seen.
Whether California can contain these three cases depends on rapidly closing vaccination gaps in communities with lowest coverage and highest risk, restoring adequate federal public health capacity to support state and local response, and implementing the equity-centered strategies that worked in 2022 but were never sustained. The infrastructure to accomplish these goals did exist.
Three cases with no identified connections between them and no clear source of transmission suggests either multiple introductions or undetected spread. The systems that failed to prevent these cases being the first domestic transmissions must now prove they can contain them. The question is whether they still have the capacity to do so.
The Debt We Owe: How Miss Major Griffin-Gracy Showed Us What Solidarity Means
Miss Major Griffin-Gracy mobilized trans women to care for gay men dying of AIDS in the 1980s when no one else would. She died October 13 as trans people face epidemic HIV rates and legislative attacks. Our tribute examines the debt we owe.
Miss Major Griffin-Gracy died on October 13, 2025, at her home in Little Rock, Arkansas, surrounded by family and the chosen community she spent 78 years building. Her death comes as America, and more pointedly, America’s LGBTQ community faces a question we have answered badly before: when solidarity becomes inconvenient, do we protect our most vulnerable, or leave them behind?
When Trans Women Saved Gay Men
In the early 1980s, when mothers and fathers refused to enter hospital rooms where their gay sons were dying, when disease transmission was a mystery, and the government stayed silent, Miss Major did what she always did: she organized.
She founded Angels of Care, mobilizing trans women in New York, San Diego, San Francisco, and Los Angeles to care for dying gay men. Many of the them were sex workers with no medical training, stepping into the void left by government inaction and familial abandonment. "No one wanted to take care of those gay guys when they first got AIDS," she later said. "And a lot of my transgender women stepped up to the plate to do it."
It wasn’t charity, it was survival. Mutual aid. Trans women needed work in a society that offered them none. Gay men needed someone willing to touch them without fear. Miss Major built a community-based health network on the principle she learned from fellow organizer Frank “Big Black” Smith in the 1970s: you don’t leave anyone behind.
By the 1990s, she was driving San Francisco’s first mobile needle-exchange van, bringing harm-reduction services directly to people who had nowhere else to turn. At the Tenderloin AIDS Resource Center, she founded GiGi’s Place: a drop-in site with a refrigerator for HIV meds that needed cold storage and washing machines so unhoused people could clean their clothes. Her colleague Yoseñio Lewis called these “small interventions that removed major barriers to care.”
When her partner, Joe Bob Michael, died of AIDS in 1995, her resolve only deepened. “The best trait an organizer can have is to listen,” she said decades later, “and to listen closely to what the people want…find out what it is they need.”
That ethic could not be more relevant today. Structural discrimination and systemic neglect have created conditions where Black trans women face HIV rates 26 times higher than other Black Americans, and trans women overall experience 42% HIV prevalence, not because of who they are, but because of who society excludes. Barriers to care, job discrimination that forces many into survival sex work, and incarceration that disrupts treatment continue to drive these disparities. Despite 92% awareness of PrEP, only 32% of eligible trans women have recently used it, a gap born of access barriers, not ignorance.
In 2025, as structural cuts unravel the safety nets meant to protect the same communities Miss Major once organized, those with the least access and the greatest burden of disease again bear the weight as the L, G, and B reap the benefits of privilege and attempt to discard those they deem “problematic” to their politics. Her method - meeting people where they are, removing practical barriers, and listening first - remains a blueprint for survival when institutions fail and care becomes a collective act. Forty years later, the people she fought alongside still face epidemic-level HIV rates as funding collapses around them. The trans women who cared for gay men when no one else would are still waiting for the community to return the favor.
Stonewall's Inconvenient Truths
The historical record shows that trans women and drag queens were on the front lines of resistance when police raided the Stonewall Inn on June 28, 1969. On the second night of rioting, Marsha P. Johnson climbed a lamppost and dropped a heavy bag onto a police car, shattering the windshield. Miss Major was knocked unconscious by police and thrown in jail. Sylvia Rivera, though her presence that first night remains disputed by historians, became a fierce advocate for trans rights immediately following Stonewall, co-founding Street Transvestite Action Revolutionaries with Johnson in 1970.
At the first Pride parade in 1970, organizers asked trans people to march in the back, but they refused. "The trans community said, 'Hell no, we won't go.' We fought for this as much as you did, or even started it," said Victoria Cruz, who was there. "And we just mingled throughout the crowd." By 1973, organizers barred drag queens including Johnson and Rivera from speaking at the Christopher Street Liberation Day Rally, claiming they would give the movement a "bad name." Rivera grabbed the microphone anyway during a speech by lesbian feminist Jean O'Leary that was critical of drag queens. The mostly white, cisgender crowd booed as she shouted: "I have been beaten. I have had my nose broken. I have been thrown in jail. I have lost my job. I have lost my apartment for gay liberation and you all treat me this way?"
Before her death in 2002, Rivera said: "I gave them their Pride, but they have not given me mine."
The pattern repeated in 2007 when Representative Barney Frank introduced an Employment Non-Discrimination Act explicitly excluding gender identity protections, arguing there weren't enough votes for trans-inclusive legislation. The Human Rights Campaign endorsed this strategic abandonment. Over 400 organizations formed United ENDA in opposition, but the message was sent: when political calculus demands it, trans people are expendable.
Miss Major was characteristically direct about this long history of exclusion. "The shame of it was that after it [Stonewall] happened, most of the Black girls that had been involved in it, we got whitewashed out of it," she told SF Weekly. "The gay and lesbian community just took it over and acted not only as if we did not exist, but that we weren't even there."
She was equally clear about the cost of these betrayals: "If these are my allies, well, I'll take my chance with my enemies because at least my enemies might have enough decency to stab me in the front."
In January 2025, the Trump Administration removed the word "transgender" from the Stonewall National Monument website, literally erasing trans contributions to the history trans women created. The erasure continues.
The Bodies Piling Up
This is not an abstract debate about political strategy. Real people are dying while our community calculates costs.
In 2025, 965 anti-trans bills have been filed across 49 states plus 81 federal bills. Twenty-seven states have banned gender-affirming care affecting approximately 120,400 transgender youth - 40% of all trans youth in America. Six states classify providing such care as a felony punishable by up to 20 years in prison.
The Trevor Project documented a 72% increase in suicide attempts in states with restrictive policies compared to states without such laws. Already, 46% of LGBTQ+ youth seriously considered suicide in the past year. The day after the 2024 election, the Trevor Project's crisis services saw a 700% volume increase, with 40% of contacts from trans and nonbinary youth.
In 2024, at least 36 trans people were murdered, with 50% being Black trans women despite Black people representing just 13% of the population. The youngest victim was Pauly Likens, murdered at age 14 in Pennsylvania. In U.S. data, trans people face nearly double the mortality rate of non-trans peers, and some estimates place their median life expectancy about 7 years shorter.
Republicans spent $215 million on anti-trans television advertisements during the 2024 election cycle, with Trump's campaign alone spending $95 million in the final two weeks - more than on housing, immigration, and the economy combined. Yet polling consistently showed 80% of Americans agreed both parties "should spend less time talking about transgender issues." Trans people represent roughly 0.5% of adults and 1.4% of teenagers, yet became scapegoats for a conservative movement seeking cultural wedge issues.
Some Democrats have responded to this onslaught by going quiet on trans rights, calculating that defending trans people was politically costly. The bodies keep piling up regardless of political strategy. Twenty-nine percent of trans people live in poverty compared to 16% of the general population. Forty-seven percent have been fired, not hired, or denied promotion for being trans. Forty-seven percent of Black trans people have been incarcerated at some point, compared to 16% of all trans people.
Miss Major spent her final months despite declining health traveling to let young trans people "see and touch me. I'm alive. There aren't that many Black girls still alive. Let them know that they can get here too."
She kept fighting because she understood what some in our community seem to have forgotten: "You can't throw anybody under the bus. You can't leave anybody behind," she insisted. "It has to include all of us, or it's not going to work."
The question facing the LGBTQ+ community is whether we believe her. Trans women cared for gay men when we were dying of AIDS. They fought at Stonewall while others watched from windows. They built our movement while we pushed them to the margins. Now they're dying, from suicide, from violence, from AIDS related complications, while we debate whether defending them is politically expedient.
Miss Major would ask what she always asked: What kind of community are we? Are we one that protects its most vulnerable members, or do we abandon them when solidarity becomes inconvenient? Her mantra echoes as both eulogy and call to action: “I'm still fucking here. We're still fucking here.” The debt remains unpaid.
Collateral Damage: How Shutdown Politics Abandons Survivors at the Margins
October is Domestic Violence Awareness Month - but in 2025, awareness is no longer enough. Across the United States, people living with HIV (PLWH), hepatitis C (HCV), and substance-use disorders (SUD) are facing a convergence of crises where intimate partner violence (IPV) amplifies every barrier to care. At the same time, the U.S. Department of Justice’s grant programs - lifelines that help survivors achieve viral suppression, complete HCV treatment, and sustain recovery - are being systematically dismantled after three decades of bipartisan progress.
The numbers tell a story every HIV provider knows. One in four people living with HIV (26.3%) has experienced intimate partner violence. When abusive partners prevent medication adherence, sabotage appointments, or create chaos that interrupts treatment, survivors show 36 percent lower odds of achieving viral suppression than those without IPV histories. Women carry a disproportionate burden, but men with IPV history face nearly triple the HIV prevalence of men without, and transgender people report lifetime IPV rates between 31 and 50 percent while experiencing 66 times higher HIV prevalence than the general population.
For HCV, the overlap is even tighter. Sixty-eight percent of women who inject drugs have HCV, and 40 to 60 percent of domestic-violence cases involve substance use. These aren’t parallel epidemics - they’re feedback loops. Violence undermines treatment; HIV or HCV status becomes a weapon of control; trauma drives relapse. Each condition magnifies the others, and when federal support for survivor-centered programs collapses, the entire structure of prevention and recovery begins to unravel.
The Bidirectional Syndemic
The relationship between intimate partner violence and HIV is both brutally direct and insidiously complex. Women in abusive relationships face a 48% higher likelihood of HIV infection than those in non-abusive relationships. Abusive partners often sabotage safer-sex practices - research shows that condom negotiation attempts frequently trigger coercion or violence. Among people living with HIV, 24% of women experience abuse after disclosing their status, and those reporting recent gender-based violence are significantly less consistent in condom use. Gay men report 26% lifetime IPV prevalence, underscoring that control operates across gender and orientation.
The link to hepatitis C exposes another layer of risk. In relationships where both partners inject drugs, power imbalances determine who controls access, dosing, and the act of injection itself. Partners with more control may withhold drugs to induce withdrawal or insist on injecting the other, reinforcing dependence and exposure. Violence-related bleeding raises the odds of HCV infection 5.5-fold, what researchers call “a previously unrecognized mechanism for HCV transmission.” Among women who inject drugs, 60% report receptive syringe sharing, a behavior shaped by depression and low self-esteem resulting from abuse.
Trauma also drives substance use itself. Eighty percent of women in drug treatment report lifetime sexual or physical assault. Reductions in PTSD severity correspond to four-fold decreases in substance use, while the reverse is rarely true - reinforcing the self-medication model in which survivors use substances to cope with violence.
This syndemic runs both ways. HIV, HCV, and substance-use disorders not only result from domestic violence - they also increase vulnerability to it. Nearly one-third of people living with HIV experience violence following serodisclosure, including coercion, control, and financial or sexual exploitation. Nearly one-third of survivors report that partners deliberately withheld essential medication, from HIV antiretrovirals to HCV or opioid-use-disorder treatments, weaponizing care itself as a means of control.
When Laws Become Weapons
HIV criminalization laws in 32 states create a deadly double bind for domestic violence survivors. Enacted largely between 1986 and 2000 - before modern antiretroviral therapy and long before the U=U consensus - these statutes criminalize potential exposure regardless of actual transmission, condom use, or viral suppression.
Twenty-four states require disclosure of HIV status before any sexual activity. Penalties range from 3 to 10 years in prison, extending to 25 or more in some states. At least five mandate sex-offender registration for HIV-related convictions.
The control dynamic is devastatingly simple. Disclosure can trigger violence - studies show 18% to 80% of women living with HIV experience violence after disclosing their status - yet non-disclosure remains a felony. Abusers exploit this legal trap, threatening to report partners to police or weaponizing the risk of decades-long sentences and sex offender registration as blackmail.
Research from Canada illustrates the toll: one-fifth of women living with HIV said criminalization laws increased violence in their relationships. The perverse outcomes are clear. In one documented case, a woman reported her partner for abuse, only to be charged herself after he alleged non-disclosure during a single encounter, despite a four-year relationship in which she had disclosed her status.
The 2025 Federal Funding Crisis
Hours after the government shut down on October 1, 2025, the Trump Administration furloughed staff in the Department of Justice’s grant-making offices, halting support for organizations that serve victims of domestic violence and other violent crimes. Officials cited the shutdown as the cause, but former staffers told Politico it didn’t have to be this way - these programs had operated during past shutdowns with existing funds.
“Their own contingency plan says that they have funds. So it’s a choice to say, ‘We want this to hurt,’” said Marnie Shiels, who worked 24 years in the Office on Violence Against Women (OVW). “I can’t know for sure what they’re thinking, but I very much fear that it is about a political motivation of wanting to get rid of this issue, get rid of this office, get rid of the staff.”
The furloughs followed a year of escalating disruptions. In February, OVW abruptly removed all eight fiscal-year 2025 funding notices, including a $40 million transitional-housing program that had served hundreds of survivors for nearly two decades. In April, the Department of Justice terminated more than 360 grants, cutting roughly $500 million in remaining funds and affecting hundreds of sub-awards for violence prevention, victim services, mental-health treatment, and reentry programs.
When new opportunities appeared in May, they came with expanded “out-of-scope” rules that barred activities “framing domestic violence or sexual assault as systemic social-justice issues.” The language aligned with a January 2025 executive order, “Defending Women from Gender Ideology Extremism,” and a subsequent directive ordering agencies to remove “gender ideology” from contracts, websites, and correspondence. PEN America later documented more than 350 banned words, including gender, women, trans, LGBTQ+, diversity, and disability - effectively erasing the terminology needed to describe many of the populations these programs serve.
The effects reach beyond domestic-violence services. NIH canceled dozens of HIV-related research grants in March; five CDC HIV-prevention branches were dissolved; and hepatitis funding was cut by $77 million. Proposed reductions to the Ryan White HIV/AIDS Program total $239 million.
For organizations serving survivors living with HIV, hepatitis C, or substance-use disorders, these converging cuts are existential - removing both their funding streams and, in some cases, their ability to even describe who they serve. Shiels noted that leadership had “said that they want federal employees to feel ‘trauma,’” and recalled the president’s remark that “a little fight with the wife shouldn’t be a crime.” The contrast, she said, “shows they don’t understand or care about these issues.”
The Office on Violence Against Women - created in 1995 and made independent in 2004 - has awarded more than $4.7 billion in grants since its inception, including $684 million across 880 awards in FY 2024. That bipartisan infrastructure recognized what decades of data confirm: 55 percent of women living with HIV have experienced intimate-partner violence, a link directly associated with lower care engagement, higher viral loads, and worse health outcomes.
Now, the systems built to protect those lives hang by a thread.
What We Must Do Now
The convergence of domestic violence, HIV, hepatitis C, and substance use disorders is not theoretical - it’s the reality providers see every day. Survivors’ viral loads rebound when housing instability forces them back to abusive partners. Hepatitis C treatment stalls when the only culturally competent program loses its grant. Trauma-informed care disappears, and relapse follows. The nation’s Ending the HIV Epidemic and hepatitis C elimination goals cannot succeed while survivors are forced to choose between safety and survival.
Rebuilding that safety net demands more than temporary fixes. The Department of Justice must reopen its grant-making offices - shutdown or not - and restore continuity for organizations on the front lines. Congress must fully fund these programs and eliminate restrictions that prevent them from even naming the people they serve. States must modernize or repeal HIV criminalization laws that trap survivors in violent relationships under the guise of public health.
A syndemic is not fate; it is a policy choice repeated, ignored, and justified until it becomes another fading bruise on a battered cheek. The systems we built to keep people alive are being dismantled in plain sight - not through neglect, but intent. And when government decides that survival itself is partisan, silence becomes complicity.
Healthcare Infrastructure Crisis Compounds America's STI Epidemic
The Centers for Disease Control and Prevention's (CDC) September 2025 release of provisional 2024 STI surveillance data offers proof that public health interventions work: more than 2.2 million cases of chlamydia, gonorrhea, and syphilis represent a 9% decline from 2023, the third consecutive year of decreases. Primary and secondary syphilis dropped 22%, chlamydia fell 8%, and gonorrhea declined 10%. "The overall U.S. STI burden remains substantial, but signs of progress continue," noted Dr. Bradley Stoner, Director of CDC's Division of STI Prevention.
Yet congenital syphilis increased 2% to nearly 4,000 cases in 2024, continuing a 700% climb since 2012 that resulted in 279 stillbirths and infant deaths in 2023 alone. CDC analysis shows 88% of these cases were preventable with timely testing and treatment. This divergence—overall rates declining while the most vulnerable populations remain unreached—reveals a deeper crisis: we are systematically dismantling the healthcare infrastructure necessary to sustain these gains precisely when evidence demonstrates what works.
The Systematic Dismantling
The erosion of STI prevention capacity unfolded across three stages. It started with CDC's Division of STI Prevention losing 40% of its purchasing power since 2003 through chronic underfunding, while local health departments shed 20% of workforce capacity from 2008 to 2019. A Harvard study documented that nearly 50% of state and local public health employees left their jobs between 2017 and 2021. Decades of flat or declining budgets hollowed out the workforce that conducts contact tracing, provides testing and treatment, and links patients to care.
In June 2023, the Fiscal Responsibility Act eliminated $1.3 billion in CDC funding specifically intended to expand Disease Intervention Specialist capacity, with states like Nevada losing over 75% of their STI prevention budgets. These cuts targeted the 2,200 people nationwide who conduct partner services and contact tracing that prevent transmission chains. The 2024 data showing declining rates was collected during this period, demonstrating what the system could achieve even as Congress pulled resources.
Then in March 2025, the Trump Administration terminated $11.4 billion in pandemic-era grants. Under HHS Secretary Robert F. Kennedy Jr., the department eliminated 31% of its workforce. The President's proposed FY 2026 budget cuts CDC funding by 53% compared to FY 2024. A George Washington University analysis projects 42,000 eliminated jobs nationwide, with states losing hundreds of millions in funding. The Administration also withheld Title X grants from 23 states, threatening 200 Planned Parenthood clinics serving 2.8 million people annually. Utah's sole Title X recipient lost $2.8 million, forcing closure of clinics that served 26,000 patients.
The consequences are materializing. Penobscot County, Maine, faces the largest HIV outbreak in state history—28 new cases over two years, seven times typical rates, nearly all among people who use drugs and are homeless. The outbreak emerged after supply shortages forced closure of the region's largest syringe services program, then accelerated following February 2025 clearing of the city's largest homeless encampment. Broome County, New York, reported in September 2025 that new HIV diagnoses among people with injection drug use history exceed the previous four years combined. The 2015 Scott County, Indiana HIV outbreak that infected over 200 people occurred after public health funding cuts eliminated syringe access. We know what happens when we strip prevention infrastructure. We are choosing to repeat it.
Interconnected System Failures
The public health workforce collapse intersects with physical infrastructure deterioration to compound access barriers. American hospitals carry $390 billion in deferred maintenance, with 50% of health systems managing buildings over 50 years old. Deteriorating facilities cannot maintain proper medication storage, provide adequate clinic space for confidential counseling, or support infection prevention protocols that 80% of hospitals lack sufficient staff to implement.
Infrastructure failures drive facility closures that eliminate access entirely. Over 100 rural hospitals closed from 2013 to 2020, forcing residents to travel 20 miles farther for common services and 40 miles farther for specialized care. Deferred maintenance becomes a death spiral: aging infrastructure drives up operating costs, reducing resources for patient care, making facilities financially unsustainable. The closures concentrate in rural areas and communities serving predominantly low-income populations and people of color - the same populations bearing the highest STI burdens. Meanwhile, as we reported in our article titled, “CBO Data Proves Hospital Systems Exploit 340B Drug Program for Billions,” when hospitals do invest in facilities, they target affluent white neighborhoods.
A Center for Economic and Policy Research analysis documents that hospitals serving communities of color receive systematically less infrastructure investment. Hospital occupancy rates are 11 percentage points higher than pre-pandemic, driven by a 16% reduction in staffed beds. Overcrowded, understaffed, aging facilities cannot deliver consistent prenatal screening to prevent congenital syphilis.
Medication access compounds these failures. Pfizer's April 2023 Bicillin L-A shortage, ongoing through 2025 with July 2025 recalls further limiting supply, eliminates the only CDC-recommended treatment for syphilis in pregnancy. A November 2023 survey found 68% of health departments stated the shortage would directly increase syphilis rates. Among 2022 congenital syphilis cases, 37.9% of birth parents received no prenatal care whatsoever.
Who Bears the Cost
Geographic and economic barriers determine who suffers these system failures. Thirty-five percent of U.S. counties are maternity care deserts with no birthing facility or obstetric clinician, affecting 2.3 million people of reproductive age. Patients in these areas face twice the uninsured rates, 13% increased preterm birth risk, and average drive times of 38 minutes versus 16 minutes nationally. These are the predictable results of decades of policy choices that prioritized cost containment over access.
Racial disparities reveal who we are willing to sacrifice. Black populations account for 32.4% of all chlamydia, gonorrhea, and primary/secondary syphilis cases despite comprising 12.6% of the population, experiencing gonorrhea at 7.7 times the rate of White populations. American Indian and Alaska Native infants face congenital syphilis rates 75 times higher than Asian families, with maternal syphilis among American Indian and Alaska Native mothers increasing 783% from 2016 to 2022. Mississippi data shows African American infants account for 71.1% of congenital syphilis cases while representing 43.3% of the general population, with 92.6% of cases among Medicaid recipients.
CDC acknowledges explicitly: "Differences by race and/or Hispanic ethnicity cannot be understood without consideration of long-standing structural contributors that are not adequately captured in case notification data such as systemic racism, challenges with healthcare access, and disparities in social determinants of health." Eight percent of Americans—27.1 million people—lack insurance coverage, with 1.5 million in the Medicaid coverage gap in ten non-expansion states, over 60% people of color.
The 2% increase in congenital syphilis amid overall STI declines tells us exactly who cannot access care: pregnant people, disproportionately Black and brown, in maternity care deserts, served by overwhelmed safety-net systems, facing medication shortages, unable to reach closing clinics. This is the distribution of harm we accept when we defund infrastructure.
The Choice Before Us
The 2024 data was collected before March 2025 grant terminations fully materialized, before spring clinic closures accelerated, before proposed 53% CDC budget cuts take effect. The encouraging trends reflect a system already deteriorating through chronic underfunding and workforce elimination. They do not reflect what comes next if current trajectories continue.
We have evidence. Disease Intervention Specialists, syringe services programs, prenatal screening, Bicillin access, Title X clinics—these interventions work. The 22% drop in primary and secondary syphilis demonstrates it. The HIV outbreak in Maine after syringe program closure demonstrates the cost of abandonment. The congenital syphilis crisis demonstrates who pays when we moralize instead of invest.
This is not a resource constraint. It is a priority choice. We can reverse the 2025 funding cuts and restore public health workforce capacity. We can address the $390 billion hospital infrastructure deficit with focus on facilities serving communities of color. We can secure medication supply chains through domestic manufacturing and emergency stockpiles. We can eliminate maternity care deserts and expand Medicaid in ten remaining states. We can fund what works.
The 2024 data proves progress is possible. The 2025 policy choices determine whether it endures or whether we return to climbing rates, preventable infant deaths, and widening disparities. Tough budget choices may be required. But the health and survival of pregnant people and their babies should not be on the chopping block. We know what works. The question is whether we value those lives enough to fund it.
The Great European Drug Drought: What MFN Means for America
As CANN and ADAP Advocacy shared in a joint statement against Connecticut's HB 6870, we warned legislators against "the base, ethical and economic cheapness of sacrificing tomorrow's lives for today's pennies." The European pharmaceutical access crisis provides concrete evidence of what America could experience under Most Favored Nation (MFN) price negotiations, where patients wait up to 989 days for approved treatments while pharmaceutical innovation migrates to Asia.
The data from Europe reveals a system in distress: only 29% of innovative medicines are fully available through EU reimbursement, down from 42% five years ago. This decline translates into life-threatening delays for patients, with those in Malta waiting nearly three years for new treatments while Germans wait four months, creating a geographic lottery where your passport determines your access to life-saving care.
Engineering a Pharmaceutical Desert
European International Reference Pricing mechanisms create precisely the downward spiral that current MFN executive orders would import to America. Twenty-six of 28 EU states use reference pricing systems, where countries systematically reference each other's prices in an interconnected web that drives pharmaceutical companies out of markets entirely.
The cascade effect reveals how a single policy decision triggers global consequences. Belgium references prices in the Netherlands, Germany, France, and the UK, taking the average to set maximum reimbursement rates. When Lithuania references Belgium's price and negotiates an even lower rate, those reductions automatically flow back through every system that references Lithuanian pricing, and round and round it goes. Research demonstrates that a 10% price reduction in Switzerland forces dozens of countries that reference Swiss prices to demand similar cuts, creating €495.2 million in additional global losses from that single initial reduction.
This interconnected pricing web forces pharmaceutical companies into difficult strategic positions that directly harm patients. For example, when a breakthrough hepatitis C cure could command €50,000+ per treatment in wealthy countries like Germany and France, but Poland negotiates for €15,000, companies face a choice: launch in Poland and watch Germany demand the same low price, or delay the Polish launch to protect higher-value markets. Pharmaceutical companies are compelled to act in the interest of their shareholders, and patients with hepatitis C develop cirrhosis or die waiting while companies and governments play pricing chess across borders.
Countries systematically exploit this system through 'free-riding' behavior, with wealthier nations deliberately referencing poorer countries' prices to secure discounts below their economic capacity. Nations reference varying numbers of other countries when setting drug prices, from as few as four countries (Netherlands) to all other EU countries (Belgium), creating a complex web where no country wants to be the highest price in anyone else's reference basket. One consequence of these pricing games is less investment: studies demonstrate that a 10% price drop in the EU correlates with a 14% decrease in venture capital biomedical funding, showing how European pricing policies directly undermine global pharmaceutical development.
Michiel Peters from the Global Coalition on Aging, who brings EU policy experience to his current advocacy role, warned in our interview that this system creates inevitable consequences: "What you're likely to see is just a smaller total amount of money going into biopharmaceutical research leading to a smaller pipeline of drugs in the future." European governments treat breakthrough medicines as commodities rather than recognizing their unique value, systematically destroying the economic foundation that makes pharmaceutical innovation possible.
Corporate Flight Accelerates Under Pricing Pressure
The reference pricing spiral has triggered an unprecedented corporate exodus from European markets, with major pharmaceutical companies choosing public confrontation over traditional behind-the-scenes negotiations. This shift has been accelerated by Trump Administration threats to implement MFN pricing that would tie U.S. prices to European levels, creating additional pressure for companies to establish pricing precedents that protect their American revenue streams.
Take, for instance, Bristol Myers Squibb's September 2025 announcement. The company declared it would launch Cobenfy at full U.S. pricing ($22,200 annually) in the UK, explicitly threatening to "walk away" if UK authorities refused to recognize the value of the first novel schizophrenia treatment in 70 years. This represents a fundamental shift from accepting European pricing terms to demanding recognition of the value of innovative treatments.
The UK's deteriorating investment climate illustrates how pricing pressures create economically unsustainable market conditions. Under the Voluntary Pricing Agreement, pharmaceutical companies must pay rebates to the NHS when industry sales exceed predetermined growth rates. These repayment rates have escalated beyond reason, from just 5.1% of revenue in 2021 to 26.5% in 2023. Companies must now return more than a quarter of their UK revenue to the government, making market participation economically untenable. Both AbbVie and Eli Lilly withdrew from the agreement entirely in January 2023, with Eli Lilly stating the scheme "has harmed innovation, with costs spiraling out of control."
The cumulative effect is a pharmaceutical industry in retreat. Novartis CEO Vas Narasimhan warned that "30 to 40 percent of cancer drugs are delayed or not launched on the European market at all," with this proportion expected to increase as pricing pressures intensify. The UK has fallen from 4th to 98th place in overall pharmaceutical trade balance since 2010, reflecting the systematic hollowing out of European pharmaceutical markets under aggressive pricing policies.
The Cost of Withheld Access
Behind these policy failures are people whose lives depend on accessing breakthrough treatments, but who find themselves trapped in bureaucratic systems that prioritize budget control over medical necessity. Take Estonian cancer patient Kadri Tennosaar for example. She required €20,000 for three months of Enhertu treatment for metastatic breast cancer. Despite the European Medicines Agency (EMA) approving Enhertu in January 2021, Estonia's government refused reimbursement, forcing her to seek treatment through charity. Her situation illustrates how European "universal healthcare" systems systematically exclude the treatments patients need most.
Romania has developed an even more troubling solution: systematic reliance on court orders for cancer treatment access. Over 1,000 people received medications through legal action in 2023, with courts consistently ruling in favor of patients seeking approved treatments. This judicial intervention effectively acknowledges that Romania's formal reimbursement system fails to provide medically necessary care, forcing dying patients into litigation to access drugs their doctors have prescribed and European regulators have approved.
The system's fundamental contradictions become clear when European patients living under universal healthcare systems resort to American-style fundraising for medical care. As Peters observed in our interview, "European patients will still start a GoFundMe to get an innovative treatment in the US because…if you're dying of a rare disease you're not going to wait 600 days." That 600-day figure represents the average time from regulatory approval to patient availability across EU countries. That’s nearly three years for treatments already deemed safe and effective by European regulators. For patients with aggressive cancers or degenerative diseases, these delays often mean death.
America's IRA Lessons Preview MFN's Future
The Inflation Reduction Act's differential treatment of small molecules versus biologics provides real-time evidence of how pricing policies reshape innovation incentives, offering a preview of MFN's likely effects. Investment in small molecules has declined 70% since September 2021, with the University of Chicago projecting this will result in 188 fewer small molecule treatments over 20 years, leading to 116 million life-years lost.
Small molecules remain particularly critical for neurological diseases like Alzheimer's and Parkinson's, which require blood-brain barrier penetration that biologics cannot achieve. The National Pharmaceutical Council found that 77% of investors report the IRA's "pill penalty" creates a disincentive for small molecule investing, with venture capital flowing overwhelmingly toward biologics. This shift away from small molecules threatens entire categories of medical innovation precisely when aging populations need breakthrough treatments for neurological conditions most.
Meanwhile, China has emerged as the global innovation leader. China's pharmaceutical contribution to the global R&D pipeline has increased from 4% in 2013 to 28% in 2023, surpassing Europe and ranking second only to the United States. From 2019-2023, China led globally with 256 new drug approvals, ahead of the US (243) and EU (191). The funding patterns confirm this shift. China accounts for over 75% of all biotech VC/PE funding in Asia-Pacific since 2019, with late-stage expansion rounds increasing 1.5x from 2019-2024. This demonstrates the systematic migration of pharmaceutical investment toward Asian markets as Western pricing policies make innovation economically unviable in traditional centers of drug development.
MFN: Importing Europe's Failures Through Executive Order
Current MFN executive orders, which have attracted bipartisan Congressional support, would import these European failures directly into American Medicare and Medicaid programs. The fundamental premise, that forcing pharmaceutical companies to accept European prices will reduce costs without affecting innovation, ignores overwhelming evidence of investment withdrawal and patient access failures across Europe.
The United States market accounts for 64% to 78% of worldwide pharmaceutical profits, making the European model economically impossible to replicate without devastating consequences for future drug development. As our previous analysis pointed out, "Europe won't catch up. Neither will China. No other country is prepared to step into the innovation gap the United States represents." Eliminating American profit margins means eliminating the economic foundation that funds global pharmaceutical research.
The projected consequences align with European experience. The CMS Office of the Actuary projected that 9%-19% of drugs would be inaccessible under the 2020 MFN proposal because manufacturers would not sell products at MFN prices, with the American Society of Clinical Oncology's analysis indicating that up to 19% of Medicare beneficiaries would lose access to care. These projections mirror current European realities, where patients routinely face treatment delays, denials, and geographic access barriers under government-controlled pricing systems.
Innovation is Access
For people living with HIV, cancer, rare diseases, and other life-threatening conditions, access to novel treatments represents the difference between survival and suffering. European pricing policies demonstrate that short-term cost savings achieved through price controls create long-term access barriers that cost far more in human suffering and economic burden than the original pharmaceutical investments.
The European experience reveals a brutal truth: government-controlled pricing systematically eliminates the treatments patients need most. Estonian cancer patients rely on charity. Romanian patients require court orders. European patients start GoFundMe campaigns to access treatments readily available in America. These policies have transformed medical innovation into a geographic lottery where your passport determines your survival prospects.
U.S. MFN policies follow the same flawed logic, promising immediate savings while systematically destroying the economic foundation that makes future cures possible. The 70% collapse in small molecule research since the IRA, combined with China's emergence as the global innovation leader, proves that pricing policies have consequences extending far beyond budget spreadsheets into the fundamental question of which countries will develop tomorrow's treatments, if they are developed at all.
Europe's pharmaceutical desert offers a preview of America's future under MFN: innovation migrating eastward, patients waiting years for approved treatments, and governments prioritizing short-term savings over long-term survival. America faces a hard choice: maintain our position as the country where breakthrough treatments emerge and are accessed first, or follow Europe's path toward innovation rationing and access lotteries. That future remains avoidable, but only if we choose innovation over rationing, access over austerity, and tomorrow's cures over today's pennies.
September Shutdown Could Cripple Open Enrollment as HIV Patients Face Coverage Crisis
Congress faces a September 30th government funding deadline that could shut down federal agencies just as Americans prepare to experience unprecedented healthcare premium increases during the November open enrollment period. The seven-week stopgap funding bill released by House Republicans would only extend government operations through November 21st, creating the possibility of multiple shutdowns right as people living with HIV and millions of others discover that their healthcare costs will increase dramatically for 2026.
The timing creates a perfect storm of healthcare disruption. Enhanced ACA subsidies expire December 31, 2025, but insurers have already built the expected 75% premium increases into their 2026 rates. When open enrollment begins November 1, Americans shopping for coverage will immediately see these massive premium spikes, creating intense political pressure on Congress just as government funding battles reach their peak.
For people living with HIV who rely on ACA marketplace plans, this convergence threatens treatment continuity at the worst possible moment. Many earn too much to qualify for Ryan White HIV/AIDS Program services but depend on enhanced subsidies to make coverage affordable. The prospect of 75% premium increases forces impossible choices between maintaining viral suppression and financial stability.
Premium Sticker Shock Meets Shutdown-Threatened Infrastructure
Insurers nationwide have proposed a median premium increase of 18% for 2026, more than double last year's 7% median increase. The majority explicitly cite the expected expiration of enhanced premium tax credits as driving rates an additional 4 percentage points higher than they would otherwise charge.
Average out-of-pocket premium payments will increase by more than 75% when enhanced subsidies expire, translating to roughly $700 more annually for the typical family. People earning between 100% and 150% of the federal poverty level would see their average premiums rise from $0 to $387 per year. In Maryland, carriers requested 17.1% increases, but rates would drop to 7.9% if Congress extends enhanced subsidies, illustrating the immediate financial impact of political inaction.
These massive increases hit Americans during November open enrollment while government infrastructure faces shutdown disruption. The September 30 deadline threatens systems needed for November 1 enrollment, and even the Republican stopgap bill expires November 21 during the critical enrollment period.
Healthcare.gov and state marketplaces require functioning federal systems to process applications and verify income for subsidy eligibility. Historical shutdown impacts show services degrade rapidly during funding lapses. The timing compounds administrative challenges from the Trump administration's Marketplace Integrity and Affordability Rule, requiring people in $0 premium plans to verify eligibility or face minimum $5 monthly charges starting in 2026.
Insurers cannot adjust these rates after open enrollment begins. Blue Cross Blue Shield of Vermont warns that healthier members will leave at a disproportionately higher rate than those with significant healthcare needs, worsening the risk pool. This death spiral dynamic makes immediate Congressional action an absolute necessity, both politically and practically, as Americans navigate premium increases while government systems fail to function.
Political Standoff Intensifies as Healthcare Costs Hit Constituents
Traditional shutdown politics change fundamentally when constituents experience immediate healthcare cost increases during an election cycle. Senate Minority Leader Chuck Schumer argues Democrats hold a stronger position because Republicans face blame for both the shutdown and healthcare cost increases their policies created.
House Speaker Mike Johnson insists ACA subsidy negotiations belong in December when they expire, calling them "a December policy debate and decision, not a September funding matter." This ignores the practical reality that Americans need certainty when making coverage decisions during November open enrollment. Families cannot wait until December to learn whether their January 2026 premiums will be affordable.
The electoral pressure becomes intense when 22 million Americans face premium increases. TD Cowen's analysis notes that "many Congressional Republicans are also eager to extend these subsidies for fear of health insurance sticker shock in advance of the November 2026 midterms." Only Senator John Fetterman has indicated willingness to vote for Republican funding without healthcare provisions, suggesting Democrats maintain unity while Republicans need Democratic cooperation they have refused to seek.
The Trump Administration compounds uncertainty through potential "pocket rescissions" that could cancel federal funding without Congressional approval. Budget Director Russell Vought defended this controversial tactic, noting "the money evaporates at the end of the fiscal year." This raises constitutional questions about Congressional spending authority and creates a trust crisis for Democrats who fear GOP leaders could agree to healthcare provisions in negotiations only to have the Administration cancel funding through rescissions after a continuing resolution passes. Lawmakers must consider both immediate shutdown impacts and the Administration's demonstrated willingness to bypass Congress on funding decisions.
State and Local Healthcare Programs Face Immediate Funding Disruption
Government shutdowns immediately disrupt state and local healthcare programs through suspended grant payments and federal workforce reductions. During shutdowns, 45% of HHS staff are furloughed, including personnel who process grants to state health departments and community organizations providing HIV services. The 2013 shutdown left 477 grant payment requests totaling $165 million unpaid while programs continued operating on dwindling reserves.
State health departments must issue stop work orders to community organizations when Ryan White grant payments cease during shutdowns. State AIDS Drug Assistance Programs face immediate medication supply crises as federal funding stops flowing to programs serving 265,000 low-income Americans with HIV medications. Unlike programs with multi-year appropriations, these discretionary programs lose payment authority immediately when government shuts down.
Community health centers serving 32.5 million Americans operate on margins where federal grants constitute 11-18% of revenue. Recent funding disruptions provide a preview of shutdown impacts: Virginia's 16 of 31 federally qualified health centers lost federal funding access, forcing three Richmond facilities to close entirely. Centers typically maintain 100 days to six months of reserves, making extended shutdowns particularly devastating.
The Women, Infants, and Children program loses funding within days of shutdown, cutting services to 6.3 million participants including 39% of all U.S. infants. State health departments lack reserves to float these federal programs, forcing immediate service reductions that disproportionately impact communities already facing healthcare access barriers.
Healthcare Access Cannot Wait for Political Theater
People living with HIV and other chronic conditions cannot afford treatment interruptions while Congress debates funding priorities. Those caught between Ryan White eligibility limits and unaffordable marketplace premiums face a healthcare access crisis manufactured by political inaction.
Healthcare advocates must demand that any continuing resolution include immediate extension of enhanced ACA subsidies through 2026. Congressional Republicans who claim to support these subsidies must prove their commitment by including them in September funding legislation, not promising future action that may never materialize.
State and local health officials should prepare contingency plans for potential grant payment disruptions while advocating with their Congressional delegations about immediate shutdown impacts on essential services. Community health centers and organizations serving people living with HIV need to communicate directly with patients about potential service disruptions and alternative care options.
Congress must choose between responsible governance that prioritizes patient care or political theater that forces impossible choices between treatment adherence and financial survival. For people living with HIV and millions of others depending on stable healthcare access, the time for action could not be shorter.
CBO Data Proves Hospital Systems Exploit 340B Drug Program for Billions
The Congressional Budget Office has delivered a damning federal validation of what CANN and other patient advocates have been arguing for years: the 340B Drug Pricing Program has become a $44 billion hospital exploitation scheme. The September 9 report confirms that large health systems are systematically gaming the program to capture massive profits while reducing charity care and consolidating away from the vulnerable communities they claim to serve.
The CBO's findings demolish the hospital industry's primary defense of 340B expansion: that growth reflects rising drug costs rather than system manipulation. The program expanded 565% from $6.6 billion in 2010 to $43.9 billion in 2021, with federal economists confirming that two-thirds of this growth stems from covered entity and third-party behaviors, not pharmaceutical price inflation. As CANN CEO Jen Laws noted, "It is a HELL of a thing that CBO found program growth is driven more by how hospitals and middlemen game the system than by the 'rising drug costs' hospitals always blame."
The implications extend far beyond 340B reform to fundamental questions about healthcare market structure and the accountability of tax-exempt institutions capturing billions in public benefits as “profit” while abandoning charity care and drowning patients in medical debt in the process.
How Hospitals Weaponize 340B for Anti-Competitive Consolidation
The CBO analysis reveals the precise mechanisms through which hospitals transform 340B discounts into acquisition capital. Hospital outpatient departments and satellite clinics control 87% of total 340B spending, providing massive cash flows that traditional community providers cannot match when competing for physician practices or specialty services.
Cancer drugs represent 41% of all 340B spending at approximately $18 billion annually, creating particularly lucrative acquisition targets. When hospitals acquire independent oncology practices, they can immediately capture 340B discounts on existing patient treatments while expanding their geographic footprint. This explains why 70.1% of buyer hospitals in mergers and acquisitions from 2016-2024 were 340B covered entities, compared to just 59.9% of hospitals nationally.
The regulatory framework enables this exploitation through geographic eligibility rules that allow hospitals to extend 340B benefits to satellite facilities serving affluent populations, provided they maintain connection to a qualifying parent institution. Off-site outpatient clinics participating in 340B exploded from 6,100 in 2013 to 27,700 by 2021, with many located in wealthy suburbs far from the low-income communities that justify program participation.
Contract pharmacy arrangements provide additional consolidation leverage, growing 2,400% from approximately 1,000 locations in 2010 to 32,069 by 2025. Hospitals negotiate exclusive arrangements with pharmacy chains, effectively controlling medication access across entire markets while extracting profits from every prescription filled by their "340B-eligible" patients, regardless of the patient's income or insurance status.
Laws captured the patient harm precisely: "hospital systems are exploiting cancer patients to drive revenue that would otherwise be considered 'profit' and further anti-competitive behaviors to the detriment of patient access." The mechanism creates a feedback loop where 340B profits fund acquisitions that eliminate competition, enabling hospitals to raise prices and reduce services while maintaining program eligibility despite providing declining levels of actual charity care.
The Charity Care Shell Game Exposes Regulatory Failure
Hospital claims about using 340B savings to support vulnerable populations collapse under scrutiny of actual charity care data. The Government Accountability Office's 2018 report documented that 340B hospitals experienced "steady decline in both charity care and uncompensated care" during the period of explosive program growth, revealing a fundamental disconnect between rhetoric and practice.
The regulatory structure enables this deception through definitional ambiguity. Hospitals routinely conflate charity care, which involves writing off debt with no patient obligation, with uncompensated care, which includes bad debt that hospitals aggressively collect through lawsuits and wage garnishments. As CANN has emphasized, "charity care is care provided at no cost or debt to the patient. Moving forward, we must not confuse, conflate, or combine generalized uncompensated care with charity care."
Johns Hopkins Hospital demonstrates how prestigious 340B institutions exploit this definitional confusion. The hospital filed more than 2,400 lawsuits against patients since 2009, with cases increasing from 20 in 2009 to 535 in 2016. Despite obtaining wage garnishments in more than 400 cases for a median amount of only $1,438, Johns Hopkins simultaneously received $36 million more in state charity care support than it actually provided.
This pattern reflects systematic regulatory failure rather than isolated incidents. A 2018 GAO survey found that 57% of 340B hospitals do not provide discounted drug prices to low-income, uninsured people at their contract pharmacies. The Health Resources and Services Administration (HRSA) lacks enforcement mechanisms to ensure program benefits reach intended populations, creating an accountability vacuum that hospitals exploit with impunity.
The policy implications prove profound. Medical debt grew from $81 billion in 2016 to $140 billion in 2019 during massive 340B expansion, precisely when enhanced hospital resources should have reduced financial barriers to care. A Pioneer Institute study found Massachusetts General Hospital's charity care dropped from 3.8% to 1% of patient revenue between 2013 and 2020, even as 340B profits increased substantially.
State Legislation Creates Compliance Theater That Benefits Hospitals
The proliferation of conflicting state 340B laws represents a masterclass in regulatory capture. Seven states enacted contract pharmacy protection laws in 2025 alone, joining eight states with similar 2024 legislation. These laws create administrative complexity that large hospital systems navigate easily while imposing crushing compliance burdens on community health centers and rural clinics.
The policy design reveals sophisticated lobbying influence. Hospital-backed legislation focuses on procedural requirements and reporting obligations that sound patient-protective but actually entrench existing power structures. Meanwhile, substantive reforms addressing charity care requirements, geographic restrictions, or patient benefit mandates remain absent from most state proposals.
One rural federally qualified health center reported 60% erosion in 340B savings resulting in a loss of $531,720 per year, forcing closure of oral health centers serving low-income patients. Large hospital systems with dedicated compliance departments experience no similar hardships, instead benefiting from reduced competition as smaller providers struggle with regulatory complexity.
Federal courts have begun recognizing this manipulation. West Virginia's S.B. 325 was blocked in December 2024when Judge Thomas E. Johnston ruled it "stands as an obstacle to achieving the federal objective of preventing fraud in the 340B Program." The emerging circuit split creates additional uncertainty that benefits well-resourced hospitals while harming smaller safety-net providers unable to navigate conflicting legal requirements.
Even supportive officials recognize the limitations. Utah Governor Spencer Cox allowed his state's legislation to become law without signature, explicitly stating the bill "does not go far enough to ensure cost savings experienced by 340B covered entities are passed onto patients." This acknowledgment exposes the fundamental inadequacy of state-level approaches to addressing federal program failures.
ACCESS Act Addresses Root Causes, Not Just Symptoms
The recently reintroduced 340B ACCESS Act represents the first comprehensive federal response to CBO-confirmed abuses. As CANN stated in its press release, "The 340B ACCESS Act is an excellent starting place to reform the 340B program. The legislation, in deep alignment with currently proposed federal rules, puts patients in the driver's seat for the first time since the program was established in 1992."
The legislation addresses structural incentives that enable hospital exploitation through hospital transparency requirements and administrative fee limits that target the accountability vacuum in current regulations. The bill's provisions for "reducing patient out-of-pocket costs through sliding fee scale drug discounts" directly address the patient access barriers created by current hospital practices.
Crucially, the ACCESS Act would "ensure PBMs appropriately reimburse on 340B drugs" and limit "third-party administrator fees," addressing the middleman extraction that enables massive profit-taking from vulnerable patient populations. The legislation also addresses gaps in the Ryan White Program's 318 grants that created the issues highlighted in the Sagebrush lawsuit, where manufacturers challenge STI clinic eligibility for 340B participation.
The legislation is far from perfect, including a six-month limitation on telehealth provisions that may harm people seeking outpatient methadone services and legitimate PrEP clinics. However, as CANN's Kalvin Pugh noted, "The 340B ACCESS Act is a critical start to putting patient need over hospital greed and finally bringing the program back to its original intent”
Federal Action Required to Restore Program Integrity
The CBO report eliminates any remaining doubt about 340B's transformation from safety-net support to hospital profit extraction scheme. The data confirms what patient advocates have documented: hospitals systematically reduce charity care while using 340B revenue to finance anti-competitive consolidation that harms the communities supposedly being served.
State legislative responses have failed because they address symptoms rather than causes. The ACCESS Act offers comprehensive federal reform that could restore program integrity by ensuring 340B savings benefit patients rather than hospital shareholders. Without such intervention, the program will continue enriching hospital systems while people living with HIV lose access to Ryan White clinics, cancer patients face treatment delays due to provider consolidation, and rural communities watch their last remaining healthcare options disappear despite billions in program funding ostensibly flowing to support them.
The choice facing policymakers is clear: prioritize patient need over hospital greed through meaningful federal reform, or continue enabling a system that betrays every principle underlying the 340B program's original mission.
The CDC's Ideological Takeover
The systematic dismantling of scientific leadership at the Centers for Disease Control and Prevention (CDC) under Health Secretary Robert F. Kennedy Jr. represents more than bureaucratic reshuffling. The firing of CDC Director Susan Monarez after just three weeks in office, followed by the resignation of four senior officials in protest, suggests we have reached a point of no return: the subordination of scientific evidence to predetermined ideological conclusions. This transformation threatens decades of progress in disease prevention and raises a troubling question for public health advocates: have we abandoned scientific rigor for the comfort of confirmation bias?
The numbers tell a story of institutional collapse. Since April 2025, the CDC has lost nearly 2,400 employees, representing 20% of the agency's workforce. More than 1,000 HHS workers have signed letters demanding Kennedy's resignation. When Monarez refused to "rubber-stamp unscientific, reckless directives and fire dedicated health experts," according to her legal team, she chose protecting public health over political expediency, and was terminated for that choice.
The Architecture of Predetermined Conclusions
History suggests Kennedy's approach follows a troubling pattern: conclusions first, “evidence” later. In June 2025, Kennedy fired all 17 members of the CDC's Advisory Committee on Immunization Practices (ACIP), replacing them with vaccine skeptics and anti-vaccine activists. Among his appointments is David Geier, a discredited proponent of the long-debunked vaccine-autism connection who lost his medical license for practicing without proper credentials.
The ideological nature of Kennedy's decision-making became even clearer when STAT reported that Monarez had submitted a confidential reform plan that closely mirrored Kennedy's subsequent proposals for CDC modernization. Her July 20 memo called for upgraded infrastructure, workforce investments, enhanced disease surveillance, and stronger firewalls against political influence—priorities Kennedy later claimed as his own in his Wall Street Journal defense. Yet Kennedy fired her anyway, not for opposing reform, but for refusing his ultimatum to "approve all recommendations from the vaccine advisory committee" and "fire top CDC officials." The revelation exposes Kennedy's public rationale about "replacing leaders who resisted reform" as fundamentally dishonest.
This pattern of predetermined conclusions reached its most explicit expression during a Cabinet meeting when Kennedy promised to reveal in September "interventions that are clearly, almost certainly causing autism," with Trump speculating that "something artificial" must be the cause. Announcing conclusions before conducting research represents the antithesis of scientific inquiry and is nothing more than predetermined outcomes masquerading as hypothesis testing.
Dr. Demetre Daskalakis, former director of the National Center for Immunization and Respiratory Diseases who resigned in protest, captured the gravity of this shift: "I only see harm coming. I may be wrong, but based on what I'm seeing, based on what I've heard with the new members of the Advisory Committee for Immunization Practices, or ACIP, they're really moving in an ideological direction where they want to see the undoing of vaccination."
The Human Cost of Ideological Public Health
The dismantling of CDC expertise creates cascading consequences that disproportionately impact vulnerable populations. The agency's budget has been cut nearly in half, from $9.1 billion to $4.2 billion. Chronic disease prevention funding, which provided $16-20 million per state annually, faces elimination. The agency now has 750 fewer "ready responders" available for health emergencies.
For people living with HIV and other vulnerable populations, these cuts represent a direct assault on health equity. The CDC's HIV surveillance systems, prevention programs, and outbreak response capabilities depend on the institutional knowledge and scientific expertise that Kennedy has systematically eliminated. When flu sample submissions from abroad decreased by 70% due to the administration's withdrawal from the World Health Organization, the United States lost crucial early warning systems for pandemic preparedness.
Dr. Debra Houry, the former chief medical officer who resigned, warned that "we are not ready for emerging health threats, and it's only getting worse." Rural communities and people with chronic conditions—populations already facing significant health disparities—will bear the greatest burden of this institutional collapse.
Bipartisan Alarm and the Need for Oversight
The crisis has prompted rare bipartisan concern from lawmakers. Sen. Bill Cassidy (R-LA), who provided a crucial vote for Kennedy's confirmation, called for the postponement of the September ACIP meeting, stating that "any recommendations made should be rejected as lacking legitimacy given the seriousness of the allegations and the current turmoil in CDC leadership." Sen. Susan Collins (R-ME) found "no basis" for Monarez's removal.
The tension within Republican ranks became evident in a public Twitter exchange between Cassidy and Sen. Rand Paul (R-KY), where Cassidy pointedly noted that "MAHA starts with preventing vaccine preventable diseases." The comment raises a fundamental question: is Secretary Kennedy aware of this starting point for his own Make America Healthy Again agenda? Paul's defense of Kennedy's vaccine skepticism highlights the fracture between evidence-based public health Republicans and those embracing anti-vaccine ideology.
Even more telling, nine former CDC directors spanning both Republican and Democratic administrations condemned Kennedy's actions as "unlike anything we had ever seen at the agency and unlike anything our country had ever experienced." When career public servants who have served under multiple administrations express such unified alarm, the threat to institutional integrity cannot be dismissed as partisan politics.
The American Medical Association issued a statement expressing deep concern about CDC's destabilization at "a challenging moment for public health," while the American Nurses Association warned that the changes "could potentially pose a direct risk to the safety and security of our nation."
The Broader Questions: Science vs. "Vibes" in Public Health Policy
The CDC crisis illuminates a broader erosion of evidence-based decision-making in public health policy. When scientific conclusions are predetermined and evidence is selectively marshaled to support ideological positions, we abandon the fundamental principles that underpin effective public health practice.
This shift toward policy by "vibes" rather than evidence gains particular momentum from social media influencer culture and the wellness industry, a $6.3 trillion global market that dwarfs pharmaceuticals' $1.65 trillion. Research from the Center for Countering Digital Hate reveals that Kennedy belongs to the "Disinformation Dozen" - 12 individuals responsible for 65% of anti-vaccine content on major platforms. These “wellness” influencers, with millions of collective followers, promote alternative health products while spreading vaccine misinformation that platforms fail to control despite documented public health harms.
The regulatory disparity amplifies this problem. While pharmaceutical drugs require 10-15 years of clinical trials costing billions, dietary supplements face no pre-market approval requirements under the 1994 Dietary Supplement Health and Education Act. This creates an ecosystem where unsubstantiated wellness claims flourish on social media while rigorously tested medical interventions face increasing skepticism from audiences primed by influencer misinformation.
The pattern extends beyond vaccines to encompass the entire architecture of public health surveillance and response. When Kennedy restricts COVID-19 vaccine access based on ideology rather than epidemiological evidence, when he eliminates chronic disease programs without data supporting their ineffectiveness, when he replaces career scientists with political appointees lacking relevant expertise, he transforms public health agencies into instruments of social engineering rather than evidence-based medicine.
One current CDC employee described this as "the beginning of the end of objective science." The consequences extend far beyond CDC headquarters in Atlanta—they reach into every community clinic serving people living with HIV, every state health department tracking disease outbreaks, every family seeking evidence-based guidance about their health decisions.
The Stakes for Health Equity and Patient Access
The response from state governments illustrates the severity of the federal abdication. California, Oregon, and Washington announced the formation of a West Coast Health Alliance to "uphold scientific integrity in public health as Trump destroys CDC's credibility." When states feel compelled to create alternative public health infrastructure, the federal system - and its leadership - have fundamentally failed.
While some states move to protect science-based public health, others are abandoning it entirely. On the same day the West Coast Health Alliance was announced, Florida declared plans to become the first state to end all vaccine mandates, including for schoolchildren. The stark contrast—three states forming an alliance to preserve scientific integrity while another dismantles evidence-based protections—illustrates how Kennedy's assault on federal public health expertise is fracturing the nation's disease prevention infrastructure.
The elimination of scientific expertise at the CDC represents a direct threat to health equity and evidence-based patient care. For advocates working to expand access to HIV prevention and treatment, for policymakers crafting evidence-based health legislation, for people relying on public health guidance to make informed decisions about their care, the stakes could not be higher.
Congress must exercise its oversight authority to protect the institutional integrity that underpins effective public health practice. This responsibility transcends partisan politics—it represents a fundamental obligation to ensure that public health decisions are grounded in scientific evidence rather than ideological predetermination. The alternative is a public health system that serves political ends rather than human health, where predetermined conclusions masquerade as scientific inquiry, and where the most vulnerable populations pay the highest price for our collective abandonment of evidence-based decision-making.