Enhanced Premium Tax Credits Face Political Crossroads as Coverage Crisis Looms

The enhanced premium tax credits that have made Affordable Care Act (ACA) marketplace coverage affordable for millions of Americans face an uncertain future as political divisions within the Republican Party intensify. With these subsidies set to expire on December 31, 2025, and insurers proposing median premium increases of 15% for 2026—the steepest in over five years—people living with HIV (PLWH) and other chronic conditions find themselves caught in a manufactured crisis that threatens to undermine decades of progress toward treatment accessibility.

The stakes extend far beyond healthcare economics. For middle-income people living with HIV who earn too much to qualify for Ryan White services but depend on subsidized marketplace coverage, the convergence of expiring tax credits and soaring premiums represents a direct threat to viral suppression and community-wide prevention efforts. As Republican leaders grapple with internal divisions over extending these pandemic-era benefits, the August 2025 deadline for insurers to finalize rates creates an urgent timeline for Congressional action.

Market Instability Signals Deeper Systemic Problems

ACA marketplace insurers across 19 states and the District of Columbia are requesting their largest premium increases since 2018, with 105 insurers proposing a median 15% increase—more than double the 7% median increase for 2025. These proposals reflect multiple interconnected pressures that disproportionately impact people managing chronic conditions requiring continuous care.

The distribution of proposed increases reveals the severity of market instability. While 32 insurers are requesting increases between 10-15%, another 24 are seeking 15-20% increases, and 20 insurers want increases exceeding 20%. Critically, no insurers have requested rate decreases for 2026, signaling unanimous expectations of higher costs across the marketplace.

State-by-state variations compound these challenges. Colorado leads with a 28.4% average increase, with insurers attributing at least 8% specifically to uncertainty surrounding enhanced premium tax credit expiration. Arkansas follows at 26.2%, Tennessee at 24.2%, and Illinois at 23.4%. These increases reflect not just underlying healthcare cost inflation running at 8% annually, but also insurers' strategic responses to anticipated market disruption.

Insurers are building approximately 4% additional premium increases specifically to cover the expected impact of enhanced tax credit expiration. This reflects their anticipation that healthier enrollees will abandon the marketplace due to unaffordability, leaving behind a sicker, more expensive risk pool that necessitates even higher premiums in subsequent years.

The 75% Premium Shock Threatens Treatment Continuity

The expiration of enhanced premium tax credits will cause out-of-pocket premiums to increase by over 75% for the 93% of marketplace enrollees who currently receive subsidies. For people living with HIV, this creates an acute crisis given the intersection of their income levels, geographic distribution, and healthcare needs.

The enhanced credits currently save the average marketplace enrollee $705 annually, representing a 44% reduction in premium costs. However, their most significant impact has been eliminating the "subsidy cliff" that previously cut off all assistance at 400% of the federal poverty level. The 1.5 million people currently enrolled above this threshold would lose all subsidies entirely, reverting to full premium payments that many cannot afford.

For a 45-year-old person living with HIV earning $65,000 annually—just above many states' Ryan White eligibility limits—annual premiums would jump from $5,525 to $6,466, an increase of $941. For older enrollees, the impact becomes even more severe, with a 60-year-old couple earning $82,000 seeing monthly premiums skyrocket from $581 to $2,111, representing an annual increase of $18,400.

Geographic disparities compound these challenges. Wyoming enrollees would see 195% premium increases averaging $1,872 annually, while rural premiums already run 10% higher than urban areas. For people living with HIV, who are disproportionately concentrated in the South where many states haven't expanded Medicaid, these geographic disparities create additional barriers to affordable coverage.

HIV Care Economics Underscore Coverage Urgency

The unique healthcare needs of people living with HIV underscore why affordable insurance coverage remains essential for the community. Annual HIV medication costs range from $36,000 to $48,000 for standard antiretroviral therapy regimens, with complete annual healthcare expenses averaging $30,000 per person. These medications account for 60% of total HIV care costs, creating an unforgiving financial equation for those facing coverage loss.

Research demonstrates a direct, quantifiable relationship between insurance affordability and health outcomes critical for people living with HIV. Each $1,000 increase in out-of-pocket costs correlates with decreased medication adherence, while those with continuous insurance coverage show 3.2 times higher antiretroviral adherence rates compared to the uninsured. This relationship directly impacts viral suppression, which prevents both disease progression and transmission to others.

Current insurance patterns reveal the precarious coverage situation for many people living with HIV. While 40% rely on Medicaid and 35% have private insurance, 11% remain uninsured. Geographic disparities compound the challenge—52% of new HIV diagnoses occur in the South, where many states haven't expanded Medicaid and marketplace premiums run highest.

Republican Division Creates Policy Uncertainty

Republican leaders face growing internal pressure to extend enhanced premium tax credits as Trump's pollster warns that the GOP will pay a "political penalty" in the 2026 election if the funding expires. The warning carries particular weight given that 56% of ACA enrollees live in Republican congressional districts, making coverage losses a direct threat to GOP electoral prospects.

The political dynamics reveal significant fractures within the party. Rep. Brian Fitzpatrick (R-Pa.), representing a swing district, advocates for continuing the credits to avoid price increases, while Sen. Mike Rounds (R-S.D.) supports extension despite representing a deep-red state. Even Sen. Tommy Tuberville (R-Ala.), running for governor, calls on his party to consider an extension, though he expresses concern about costs.

However, conservative opposition remains fierce. Rep. Andy Harris (R-Md.), chair of the House Freedom Caucus, wants the funding to end, calling it unaffordable Covid-era policy. Rep. Chip Roy (R-Texas) dismisses extension efforts as a "nonstarter," while Sen. Ron Johnson (R-Wis.) flatly opposes preserving the subsidies.

The $335 billion ten-year cost of permanent extension creates a significant hurdle for fiscally conservative Republicans. Sen. Thom Tillis (R-N.C.), an early proponent of continuing the funds, suggests modifications may be necessary "to get Republicans on board," while House Speaker Mike Johnson (R-La.) keeps options open, saying the issue is "on the radar" but hasn't come up yet.

Ryan White Program Cannot Fill Coverage Gap

The Ryan White HIV/AIDS Program, designed as a safety net for low-income people living with HIV, typically limits eligibility to those earning 400-500% of the federal poverty level, varying by state. This creates a critical coverage gap for middle-income people who earn too much for Ryan White services but cannot afford unsubsidized marketplace premiums.

The enhanced premium tax credits have successfully bridged this gap for an estimated 50,000 Ryan White clients who received marketplace premium assistance by 2014, a number that has grown significantly since. These people typically fall in the 150-400% federal poverty level range, using Ryan White for premium assistance, copay help, and wraparound services while relying on ACA plans for comprehensive coverage beyond HIV-specific care.

The program's "payer of last resort" status means it cannot serve as primary insurance, making affordable marketplace coverage essential for non-HIV medical needs. Without marketplace coverage, Ryan White programs alone cannot provide comprehensive healthcare access for people living with HIV.

Policies for Sustainable Solutions

The convergence of enhanced tax credit expiration and massive premium increases demands immediate Congressional action to prevent a preventable public health crisis. Policymakers must recognize that insurance affordability directly impacts HIV treatment adherence and viral suppression—factors that prevent transmission and save lives.

Congress should extend enhanced premium tax credits through at least 2027 to provide market stability while developing longer-term reforms. This extension must maintain the elimination of the subsidy cliff at 400% of federal poverty level, ensuring continued coverage for middle-income people living with HIV who fall outside Ryan White eligibility.

State policymakers should strengthen coordination between Ryan White programs and marketplace enrollment, following successful models in California and New York. This includes streamlining enrollment processes, improving data sharing between programs, and ensuring comprehensive support for people transitioning between coverage sources.

The Urgency of Action

As insurers face their August 2025 deadline to finalize rates based on uncertain Congressional action, the window for preventing coverage catastrophe narrows rapidly. Congressional Budget Office projections show marketplace enrollment dropping from 22.8 million to 18.9 million in 2026 alone, with continued declines to 15.4 million by 2030 if enhanced credits expire.

For people living with HIV who have achieved viral suppression through consistent treatment access, January 1, 2026 represents a politically manufactured crisis that threatens both individual health outcomes and community-wide prevention efforts built on treatment as prevention. The precision of this policy failure specifically targets middle-income Americans who work, pay taxes, and contribute to their communities, yet find themselves earning just enough to be abandoned by both safety net programs and affordable insurance markets.

The stakes transcend healthcare policy, touching fundamental questions about American commitments to public health, health equity, and the value we place on treatment accessibility. With Republican polling data showing broad support for continuing these credits and electoral consequences looming in competitive districts, the political incentives align with public health imperatives. Whether Congressional Republicans recognize this convergence and act accordingly will determine whether decades of progress toward HIV treatment accessibility survives the current political moment.

Medicaid loses billions as 340B program expansion collides with state budgets

The 340B Drug Pricing Program diverted $6.5 billion in rebates away from Medicaid in 2024, with state governments shouldering $2.3 billion of these losses, according to a July 2025 study by the Berkeley Research Group (BGR). This financial hemorrhaging stems from a fundamental design flaw where federal duplicate discount prohibitions create perverse incentives that simultaneously drain state healthcare budgets while enabling systematic exploitation of taxpayer-funded programs.

The study, commissioned by the Pharmaceutical Research and Manufacturers of America (PhRMA), represents the first comprehensive state-by-state analysis of how the 340B program's expansion into managed care environments undermines Medicaid's drug rebate collections. While the pharmaceutical industry's funding raises legitimate questions about methodology and framing, the underlying financial mechanics reveal a critical policy failure that demands immediate federal intervention.

The managed care loophole: How billions slip through regulatory gaps

The crux of the problem lies in the structural incompatibility between the 340B program's provider-based discount model and Medicaid's claims-based rebate system. Federal law prohibits manufacturers from providing both a 340B discount and a Medicaid rebate on the same drug unit—a sensible protection against duplicate discounts that becomes problematic when applied across different payment systems.

In fee-for-service Medicaid, this works as intended. Federal regulations under 42 CFR 447.512(b) require states to reimburse pharmacies at the actual acquisition cost, which is the discounted 340B price plus a dispensing fee. Lost rebate revenue gets offset by reduced reimbursement, maintaining fiscal neutrality.

Managed care environments tell a completely different story. The BRG analysis found that "managed care plans generally do not reduce reimbursement for 340B drugs—and in some cases are statutorily prohibited from doing so—the loss in rebate revenue from 340B expansion is not offset and drives up the net cost of prescription drug coverage for states and the federal government." Managed care organizations negotiate rates that typically exceed the discounted 340B price, with covered entities and contract pharmacies capturing the difference as revenue. At the same time, states forfeit manufacturer rebates without corresponding savings.

This distinction matters because managed care now dominates Medicaid delivery, covering approximately 72% of beneficiaries. The scale of this shift has transformed what was once a manageable tracking challenge in fee-for-service environments into a massive revenue diversion that states struggle to monitor, let alone prevent.

State-by-state devastation reveals policy choices and fiscal impact

The geographic distribution of losses illuminates how state policy decisions shape financial outcomes. Pennsylvania faces the steepest hit, with $634.8 million in total ineligible rebates, translating to a direct state budget impact of $265.3 million after accounting for federal matching funds. Illinois follows with a total of $544.3 million ($238.4 million state share), while Massachusetts sees a total of $433.5 million ($189.9 million state share).

These figures represent real money that could fund healthcare access, improve provider reimbursement, or provide budget relief for cash-strapped state programs. For context, Pennsylvania's $265 million loss exceeds the entire annual budget of many state health departments.

Notably, fifteen states appear as "N/A" in the analysis, indicating their Medicaid program structures prevent these specific costs. The BRG methodology "accounts for the 340B/Medicaid policies specific to each state," suggesting these states have implemented carve-out policies or other structural protections that eliminate managed care 340B dispensing to Medicaid beneficiaries.

California and New York exemplify this approach, having transitioned prescription drug coverage out of managed care partly due to 340B program costs. While these carve-outs protect rebate revenue, they require states to directly manage pharmaceutical benefits—a complex undertaking that smaller states may lack the resources to implement effectively.

Secondary market distortions compound direct fiscal harm

The BRG study acknowledges that rebate losses represent only part of the 340B program's broader impact on Medicaid spending. The analysis notes: "Our analysis does not account for other pathways through which the 340B program may be contributing to increased spending in Medicaid. The 340B program has been associated with a shift in care toward hospitals, for example—generally a higher-cost setting."

This observation aligns with research showing that 340B eligibility incentivizes provider consolidation and shifts in care settings. A 2018 Health Services Research study found that the 340B program has a significant impact on cancer care site selection and spending in Medicare, while a 2016 Milliman analysis documented how cost drivers shift across different care settings. When hospitals acquire physician practices or expand outpatient departments to capture 340B revenue, patient care migrates from lower-cost settings to higher-cost hospital environments. For Medicaid programs operating under global budgets or facing legislative pressure to control spending, these cost shifts compound the rebate revenue losses documented in the BRG analysis.

The study also references evidence that "340B covered entities tend to use more and/or more costly drugs for their patients, potentially because 340B drug margin (the difference between acquisition cost and reimbursement) is often greater for more expensive medicines." A 2015 Government Accountability Office (GAO) report found that financial incentives were used to prescribe 340B drugs at participating hospitals. A 2022 Milliman analysis of commercial outpatient drug spending at 340B hospitals and a 2025 Journal of Health Economics study on physician agency in 340B expansion document these utilization patterns. This dynamic creates perverse incentives where financial considerations may influence prescribing patterns, driving up both drug costs and Medicaid expenditures beyond the direct rebate losses.

Federal regulatory abdication enables systematic exploitation

The scope of revenue diversion revealed in the BRG study reflects broader failures in federal oversight and program integrity. A 2020 GAO report found that 25% of audited 340B programs had duplicate discount errors, with 264 of 429 cases caused by inaccuracies in the Medicaid Exclusion File system itself—the very mechanism supposed to prevent these problems.

More troubling, GAO found that only 4 of 13 covered entities had accurate descriptions of state Medicaid policies, suggesting systematic confusion about compliance requirements. When the federal oversight agency's own tracking system contains errors and covered entities lack a basic understanding of duplicate discount rules, billions in revenue diversions become inevitable.

The Centers for Medicare & Medicaid Services (CMS) "provides limited oversight of state Medicaid duplicate discount prevention efforts, leaving this responsibility to states, which are not always sufficiently funded or staffed to meet this responsibility," according to the BRG analysis. This abdication of federal responsibility creates a regulatory vacuum where systematic revenue diversions can occur without detection or accountability.

As we documented in our June 2025 analysis, CMS's refusal to mandate federal claims modifiers in its Medicare Drug Price Negotiation Program guidance exemplifies this regulatory failure. Claims modifiers represent existing, proven technology that could enable automated duplicate discount prevention, yet CMS has chosen to perpetuate complex, error-prone manual processes that enable continued exploitation.

Context of federal cuts amplifies the crisis

The timing of these revelations proves particularly concerning given broader federal policy changes affecting safety-net healthcare financing. As detailed in our July 2025 analysis of the One Big Beautiful Bill Act, proposed Medicaid cuts threaten to force 200,000 people living with HIV off coverage while simultaneously reducing Ryan White HIV/AIDS Program capacity to serve as a safety net.

When federal cuts increase provider dependence on 340B revenue precisely as that revenue diverts billions from state Medicaid programs, the result is a death spiral for safety-net financing. States lose revenue they need to maintain Medicaid access while providers chase 340B margins to replace vanishing federal funding. People living with HIV and other vulnerable populations get caught in the middle as both funding streams face pressure.

This dynamic transforms the 340B program from a targeted safety-net support into a massive wealth transfer from taxpayer-funded Medicaid programs to hospital systems and contract pharmacy networks. The BRG study's $6.5 billion figure likely represents a conservative estimate given the secondary spending effects and ongoing program expansion.

Immediate federal intervention required

Immediate federal action to implement mandatory claims identification systems and comprehensive program transparency is urgently needed. Claims modifiers represent proven technology already used in Medicare that could enable real-time duplicate discount prevention without disrupting legitimate 340B access for safety-net providers.

States cannot solve this problem unilaterally. The interstate nature of managed care organizations, the federal structure of both 340B and Medicaid programs, and the technical complexity of pharmaceutical supply chains require coordinated federal leadership. Every day of continued regulatory inaction enables millions more in revenue diversions while undermining both program integrity and taxpayer confidence.

The 340B program serves legitimate safety-net functions, but systematic exploitation of regulatory gaps threatens its long-term viability while imposing unsustainable costs on state budgets. Federal agencies must choose between meaningful reform that preserves legitimate access while preventing abuse, or continued abdication that enables billion-dollar revenue diversions until political pressure forces more drastic interventions. For the vulnerable populations depending on both 340B providers and Medicaid access, the stakes of this choice could not be higher.

The Coming HIV Care Crisis

The One Big Beautiful Bill Act (OBBBA)'s reduction of Medicaid expansion eligibility from 138% to 100% of the federal poverty level (FPL) creates an unprecedented crisis for HIV care in the United States, threatening to force approximately 200,000 people living with HIV off coverage while simultaneously undermining the Ryan White HIV/AIDS Program's capacity to serve as an adequate safety net, ultimately jeopardizing decades of progress toward ending the HIV epidemic and disproportionately harming communities of color and rural populations who already face significant barriers to care.

A Crisis at the Intersection of Policy and Survival

The One Big Beautiful Bill Act, signed into law on July 4, 2025, represents, according to the National Alliance of State and Territorial AIDS Directors (NASTAD), a moment when "AIDS Drug Assistance Programs (ADAPs) stand at a critical precipice." Let us not mince words: this legislation systematically dismantles the interconnected safety net that has enabled the United States to achieve the highest rates of viral suppression in the history of the epidemic.

The math, like those who passed this legislation, is cruel and unforgiving. With 40% of non-elderly adults living with HIV relying on Medicaid for coverage—nearly three times the rate of the general population—this eligibility reduction targets precisely the demographic most dependent on public health insurance. The Congressional Budget Office (CBO) projects that 7.8 million people will lose Medicaid coverage overall, with advocacy organizations estimating that approximately 200,000 people living with HIV will be among those stripped of coverage.

The timing creates a perfect storm. As NASTAD warns, "enhanced premium tax credits associated with Marketplace plans are set to expire later this year." At the same time, state health departments face "drastic budget cuts and reductions in force because of federal agency cuts." This convergence of federal policy changes threatens to create what NASTAD calls "sharp increases in the number of uninsured people with low incomes," precisely when the safety net programs designed to catch them are facing their own funding constraints.

The Medicaid Foundation: Why This Coverage Matters

The reduction from 138% to 100% of the federal poverty level specifically targets the income bracket where HIV prevalence is highest. Research demonstrates that 42% of Medicaid enrollees with HIV gained coverage through the Affordable Care Act's expansion, with this figure rising to 51% in expansion states. More than a mere statistical abstraction, it represents hundreds of thousands of people living with HIV (PLWH) who gained access to consistent, comprehensive healthcare for the first time.

The financial implications reveal the complexity of HIV care. Average Medicaid spending reaches $24,000 per HIV enrollee compared to $9,000 for non-HIV enrollees, reflecting the intensive medical management required for effective HIV treatment. When coverage disappears, these costs don't vanish—they shift to an already overwhelmed safety net or go unmet entirely, leading to treatment interruptions that increase viral loads and HIV transmission risk.

State-level analyses paint an even grimmer picture. Louisiana and Virginia face 21% spending cuts over the 10-year period, while Southern states that bear 52% of new HIV diagnoses despite comprising only 38% of the population will see disproportionate impacts. The legislation includes five major provisions that collectively cut $896 billion from Medicaid: work requirements, repealing Biden-era eligibility rules, provider tax restrictions, state-directed payment limits, and increased eligibility redeterminations.

The Ryan White Program: Last Resort, Impossible Math

The Ryan White HIV/AIDS Program operates on a fundamentally different model than Medicaid—one that makes absorbing massive coverage losses mathematically impossible. With $2.6 billion in discretionary funding requiring annual Congressional appropriations, the program lacks Medicaid's entitlement structure that automatically expands to meet growing needs.

The program's current client base reveals the scale of the challenge. Ryan White already serves over 576,000 clients annually, representing more than half of all diagnosed HIV cases. Critically, 39% of Ryan White clients have Medicaid as their primary payer, meaning they use Ryan White for wraparound services Medicaid doesn't cover. When these people lose Medicaid, Ryan White must suddenly cover their entire care costs—an impossibility given current funding constraints.

NASTAD's analysis warns this would "shift unsustainable burdens to the Ryan White HIV/AIDS Program," potentially forcing jurisdictions to reintroduce AIDS Drug Assistance Program (ADAP) waitlists not seen since the early 2010s. The program's "payer of last resort" status means it legally must serve anyone without other coverage options, creating an unfunded mandate when Medicaid disappears.

Historical evidence demonstrates the program's existing capacity limitations. From 2017-2019, 58.7% of uninsured persons had unmet needs for HIV ancillary care services, yet the program achieved 90.6% viral suppression rates among clients in 2023—a testament to its effectiveness when adequately resourced.

The proposed FY 2026 budget compounds this crisis by cutting Ryan White funding to $2.5 billion while eliminating Part F entirely. Part F includes AIDS Education and Training Centers that reached 56,383 health professionals last year, representing a critical workforce development component that would disappear precisely when demand for HIV care is expected to surge.

Healthcare Infrastructure Under Siege

Federally Qualified Health Centers (FQHC), serving as the backbone of HIV care in underserved communities, face an existential crisis. With Medicaid comprising 43% of FQHC revenue, the reconciliation bill threatens the fundamental business model of these safety-net providers. FQHCs currently operate on razor-thin margins approaching negative 2.2%, with 42% reporting 90 days or less cash on hand.

The rural healthcare crisis intensifies these challenges. Over 700 rural hospitals face closure risk—representing one-third of all rural hospitals—with 171 having shut down since 2005. The bill's $25 billion rural transformation fund provides only 43% of what experts calculate is needed to offset Medicaid cuts.

For HIV care, this means losing critical access points in areas already designated as priority jurisdictions for the Ending the HIV Epidemic (EHE) initiative. Research demonstrates that FQHCs in the rural South could reduce median drive time to HIV care from 50 to 10 minutes—but only if they remain financially viable. When Medicaid patients lose coverage, FQHCs must still serve them as uninsured patients by law, creating additional uncompensated care costs the facilities cannot absorb.

The 340B Program: Hidden Financial Hemorrhaging

The removal of Pharmacy Benefit Manager (PBM) spread pricing prohibitions represents a significant blow to 340B savings that HIV programs depend on for sustainability. The 340B program generated $38 billion in discounts in 2020 alone, with Ryan White clinics using these savings to serve an additional 43,000 people living with HIV.

Without spread pricing protections, PBMs can continue diverting these savings through discriminatory practices. States have documented massive overcharges: Ohio lost $224.8 million in one year, Pennsylvania $605 million over four years, and Maryland $72 million annually to spread pricing schemes. For HIV programs already operating on minimal margins, these losses represent the difference between serving patients, implementing waitlists, or shutting down altogether.

The policy intersection becomes particularly cruel when considering substance use services. While the OBBBA protects substance use disorder services from cost-sharing requirements—a "modest but important win" according to county officials—the broader context undermines these protections. Research shows 23.94% of people with HIV need treatment for alcohol or substance use, with people who inject drugs facing 30 times higher HIV risk than non-users.

Geographic and Demographic Devastation

The reconciliation bill's impacts fall hardest on communities already bearing disproportionate HIV burdens. Black and Hispanic/Latino people account for 64% of all people with HIV while representing only 31% of the population. These communities have higher Medicaid coverage rates due to lower incomes and higher disability rates, making them particularly vulnerable to coverage losses.

Southern states face a catastrophic combination of high HIV prevalence, limited state resources, and political resistance to mitigation strategies. The region accounts for 52% of new diagnoses, and includes many non-expansion states where 66% of HIV-positive adults rely on disability-related Medicaid pathways.

Nine states have trigger laws automatically ending Medicaid expansion if federal matching rates drop, creating immediate coverage cliffs. The intersection of geography, race, and poverty creates concentrated zones where HIV care infrastructure may collapse entirely, reversing decades of progress in communities that have historically faced the greatest barriers to care.

Clearly, This Isn’t About Fiscal Responsibility

The legislation represents fiscal malpractice when considering the long-term costs of new HIV transmissions. Each new HIV infection creates $501,000 in lifetime healthcare costs, while achieving 72% viral suppression would cost $120 billion over 20 years. The math is unambiguous: preventing new infections through sustained treatment is far more cost-effective than treating them after they occur.

The HIV community's response demonstrates the severity of the threat. Over 113 organizations relaunched the #SaveHIVFunding campaign, while the Partnership to End HIV, STI, and Hepatitis Epidemics united major organizations in opposition, emphasizing that "healthcare is not a reward for paperwork—it is a human right."

As NASTAD's analysis concludes, "When one of these pillars weakens, the others feel the shock waves"—and this bill doesn't just weaken pillars, it demolishes them. Without immediate action to reverse these cuts, the United States will witness a preventable reversal of decades of progress in HIV care, measured not in budget savings but in lives lost to a disease we know how to treat.

War-Torn Ukraine Beats U.S. on Integrated Addiction Care

At Strizhavka Detention Center in central Ukraine, vending machines dispense clean syringes to inmates while Russian missiles target infrastructure just hours away. It's a remarkable scene: a country under active invasion operates one of the world's most progressive harm reduction networks, achieving an 81% reduction in AIDS mortality since 2010 and zero new HIV infections in prisons with needle exchange programs. Meanwhile, the United States continues to trap vulnerable patients in a fragmented maze of disconnected systems that increases costs, worsens outcomes, and reflects a fundamental failure of political will to prioritize evidence-based care coordination over institutional preservation and stigma-driven policy making.

Ukraine has mastered what public health experts call syndemic response—addressing the interconnected epidemics of substance use disorders, HIV, hepatitis C, and tuberculosis through innovative, integrated solutions. In war-torn Ukraine, where Russian missiles regularly destroy infrastructure, a person with opioid addiction can access methadone through any pharmacy with a prescription and receive 30-day take-home supplies during crisis periods. In Louisiana, that same person might spend months navigating separate systems for addiction treatment, HIV care, and basic healthcare—if they can access treatment at all. While Ukraine maintains comprehensive services under active invasion, Louisiana saw drug overdose deaths quintuple from 401 to 2,376 between 2017 and 2022. This divergence reveals a fundamental truth: healthcare fragmentation represents a policy choice, not an inevitability.

Ukraine's Integrated Model: Coordination Under Fire

Ukraine operates Europe's most comprehensive harm reduction network, serving 250,000+ vulnerable people through coordinated government-civil society partnerships. The system's architecture connects HIV testing, hepatitis C screening, opioid substitution therapy (OST), and substance use disorder treatment into one seamless framework coordinated by the Alliance for Public Health Ukraine.

Beyond Strizhavka, the integration model extends across the country's correctional system. The Free Zone organization now operates similar programs in 56 Ukrainian prisons, a radical departure from punitive approaches that have defined American corrections. Ukraine trains incarcerated people as peer counselors, with 77 certified social workers among more than 400 inmates trained through the program.

Mobile testing units exemplify the wraparound approach. Inside vans parked outside Kyiv methadone clinics, social workers help clients test themselves while offering take-home tests for partners—a simple intervention that dramatically expands testing reach. One client, Mykolai, can earn small payments for testing and receive cards to distribute to friends, slowly building a self-sustaining testing network that operates independently of formal healthcare systems.

War forced remarkable adaptations that reveal the system's flexibility. Solar panels now power clinics to ensure uninterrupted service during blackouts. The HelpNOW digital platform coordinates care for 30,000+ displaced Ukrainians across 52 countries, ensuring treatment continuity despite massive population displacement. As one incarcerated person described the transformation, "civilization came to this place" through these integrated services.

Louisiana as U.S. Fragmentation Case Study

Louisiana exemplifies how U.S. system fragmentation creates insurmountable barriers for vulnerable patients despite having what advocates describe as "one of the best coordination of care situations across the country." The state serves 22,920 people living with HIV across a fragmented regional system where Ryan White programs operate across Regions 3-9 for Part B funds, with separate Part A grants for Greater New Orleans and Baton Rouge, and Parts C and D funded at local clinic and community organization levels.

This multi-layered approach creates coordination nightmares where patients must navigate different systems depending on their geographic location and specific service needs. The fragmentation's impact is clear, as CANN CEO Jen Laws explains: "One of our biggest barriers in this country is that the segregation of our programs do not encourage engagement in care. Indeed, they create such administrative burden on the patient alone that people fall out of care all the time. When someone goes to a space they're supposed to trust, the 'experts' managing their care, with a problem and get told to run around more and more and more, trust disintegrates. Getting the care you need shouldn't be a full-time job.”

The human cost manifests in stories like Jessica Baudean and Terry Asevado, methadone patients who face extraordinary barriers to daily treatment access. Baudean, who is disabled and lives in Avondale, must rely on Medicaid transportation when available or have Asevado push her wheelchair 1.4 miles to the nearest bus stop, then spend an hour taking two buses to reach the only clinic on the city's East Bank authorized to dispense their medication. If they arrive even a minute past noon, they miss their dose. If they miss a dose, they may be denied the next one—a punitive approach that penalizes the very disability and transportation barriers the system creates. When Asevado was arrested in Jefferson Parish, Baudean described her partner's inevitable suffering: "Poor Terry, I know he's still going to be sick right now." The Jefferson Parish Sheriff's Office lacks coordination with local methadone clinics despite federal regulations permitting continued treatment, forcing people in custody into painful and dangerous withdrawal.

Nationally, only 39% of Ryan White clients have Medicaid as their primary payer, indicating massive gaps in coverage coordination. Research reveals that fragmented care costs $4,542 more annually per patient—$10,396 versus $5,854 for coordinated systems. Patients face duplicative eligibility verification, inconsistent prior authorization requirements, and limited data sharing between systems, with 73% of insured adults performing administrative healthcare tasks annually.

For returning citizens—formerly incarcerated people—the barriers multiply exponentially. Despite HIV prevalence among incarcerated populations being three times the general population rate, only 18.9% of criminal justice-involved people with substance use disorders receive treatment. Among those released from Texas prisons, just 5% maintain medication continuity within two months, creating catastrophic treatment disruptions precisely when continuity matters most.

Political Backlash and Current Threats

Even traditionally supportive states are retreating from harm reduction while federal policy accelerates toward punitive approaches. Oregon's House Bill 4002 reinstated criminal penalties with up to six months jail time for possession, largely repealing its pioneering decriminalization measure. California voters passed Proposition 36, rolling back criminal justice reforms despite opposition from harm reduction advocates.

Federal policy under the Trump administration has dramatically accelerated this retreat. The Department of Health and Human Services (HHS) announced $11.4 billion cuts to addiction and mental health programs, while the Substance Abuse and Mental Health Services Administration (SAMHSA) faces $1 billion in immediate cuts with 20,000 planned staff reductions. The 2026 budget proposal explicitly criticizes harm reduction, stating SAMHSA grants "funded dangerous activities billed as 'harm reduction.'"

This political momentum contradicts public opinion. Bipartisan polling shows 79% support for medication-assisted treatment and 64% for overdose prevention centers. However, partisan breakdown reveals deep divides that complicate political feasibility, with Democrats supporting overdose prevention centers by 67 points but Republicans by only 2 points.

The resistance reflects deeper currents of moralizing medical conditions like substance use disorders and HIV—a toxic legacy of moral majority politics that treats addiction as moral failing rather than health condition. This moralization couples with America's fetishization of policing and punishment, creating an undercurrent of ill will toward helping people dealing with these issues. Congressional dynamics offer little hope for reversal. House Republicans proposed the provocatively named "Crack is Whack Act" to explicitly ban safe consumption sites nationwide, while the federal "crackhouse statute" continues blocking evidence-based interventions. This political landscape creates a paradox: public health crises that should unite communities instead become wedges for division when filtered through moral judgment rather than medical evidence.

Systemic Barriers and Misaligned Incentives

U.S. healthcare fragmentation persists through structural design flaws embedded in historical decisions that separated substance use treatment from mainstream medicine. This separation created what researchers describe as "insular fields with inadequate communication, coordination, and collaboration." Multiple funding streams—federal, state, and local government (42%), Medicaid (21%), Medicare (5%)—operate under different rules with incompatible requirements.

Financial incentives actively maintain fragmentation. Fee-for-service payment models reimburse discrete services rather than coordinated care, with administrative burden consuming 50% of physician time. Technology failures compound human ones: despite decades of electronic health record adoption, 48% of hospitals share data with other organizations but receive nothing in return.

Worse yet, provider stigma compounds structural barriers. Systematic reviews document that 20-51% of healthcare professionals hold negative attitudes toward people with substance use disorders. Privacy regulations like 42 CFR Part 2—federal rules that create stricter confidentiality protections for substance use treatment records than standard medical records—create additional barriers to integration by requiring separate consent processes and record systems for substance use treatment, despite 2024 reforms aimed at improving coordination.

The Moral Test of Healthcare Policy

Ukraine's wartime harm reduction success exposes American policy failures as choices, not inevitabilities. A country under active invasion maintains better care coordination than the world's wealthiest nation during peacetime. This contrast reveals how political will, not resources, determines outcomes.

Successful integration models do exist within the United States. Vermont's Hub and Spoke model achieves the nation's highest opioid use disorder treatment capacity—10.56 people in treatment per 1,000 population. Nine regional "Hub" clinics provide specialized services while 87+ "Spoke" sites in primary care settings offer office-based treatment, ensuring appropriate care levels while maximizing capacity.

Breaking this deadlock requires acknowledging that healthcare fragmentation reflects deeper societal decisions about who deserves care. Yet even modest reform efforts face existential threats as Congressional Republicans advance unprecedented cuts to programs serving the most vulnerable Americans. The proposed $1.1 trillion in Medicaid reductions would devastate services for 71 million people, prompting callous dismissals from GOP leaders like Senator Mitch McConnell, who told worried colleagues that voters will "get over it" when they lose healthcare coverage. Iowa Senator Joni Ernst doubled down on this cruelty, telling constituents concerned about Medicaid cuts that "we all are going to die" and posting a sarcastic apology video filmed in a cemetery. These responses reveal the moral bankruptcy underlying American healthcare politics—treating life-sustaining programs as political footballs while dismissing the human consequences with shocking indifference.

Ukraine has shown that even under the most challenging circumstances imaginable, integrated care saves lives and money. American policymakers have no excuse for maintaining systems that force vulnerable patients to navigate bureaucratic mazes while their health deteriorates, especially when the alternative being offered is abandoning them entirely through devastating cuts that prioritize tax breaks for the wealthy over basic human dignity.

How Pharma Can Turn Advocates Into Allies

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

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

Federal Funding Collapse Creates Cross-Disease Crisis

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

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

Industry's $100 Million Evolution

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

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

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

A Hard Look at the Two-Tier Funding System

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

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

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

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

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

Innovation Models Ready for Cross-Disease Application

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

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

Experiential Investment Over Transactional Charity

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

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

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

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

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

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

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

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

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

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

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

RFK Jr.’s Administration for a Healthy America is Not Healthy

RFK Jr.’s paradigm for reimagining the pathway to improve population health in the United States includes the creation of what he calls the Administration for a Healthy America (AHA). He has issued a mandate to solve chronic disease issues that he views as essential. Implementation of the AHA would consolidate many existing agencies and lines of funding to increase efficiency. However, there is no benefit to consolidation if it means stripping away resources, including finances and personnel, without fiscal reinvestment and infrastructure replacement.

The AHA absorbs multiple entities under one umbrella. Agencies such as the Substance Abuse and Mental Health Services Administration (SAMHSA), Health Resources and Services Administration (HRSA), the Office of the Assistant Secretary for Health (OASH), and the National Institute of Environmental Health Sciences (NIEHS) would cease to exist and their functions would be absorbed into the new AHA entity. While there is some benefit to government reorganization and streamlining of funding and communication silos, the pathway set by AHA appears to eliminate the benefits of the current entities in favor of a nebulous description of chronic disease prevention.

RFK Jr. champions the fight against the causes of chronic disease across the nation. However, the specifics of his foci do not logically follow data. Approximately six out of 10 Americans live with one chronic disease, while four in ten have two or more. While extolling the virtues of eradicating chronic disease, actions by the U.S. Department of Health & Human Services (HHS)would abolish the Centers for Disease Control & Prevention’s (CDC) National Center for Chronic Disease Prevention and Health Promotion in its present form. In budget documents, AHA is referred to as “the primary federal agency committed to transforming the health of all Americans by addressing the root causes of chronic disease, promoting preventive care, advancing mental health and substance use services, and increasing access to a healthy environment and foods.” Yet the priorities of what are being viewed as pertinent chronic disease issues are what concern many stakeholders.

Kennedy continues to push the narrative that too much money and focus is spent on infectious disease inquiry at the expense of chronic diseases. However, the data show that this is not true. Receiving $8.1 billion, infectious diseases landed at ninth on the list of NIH-funded research subjects in 2024. Comparatively, brain disorders received $8.1 billion, and Cancer received almost the same as the entirety of infectious diseases. One cannot reallocate a resource focus from infectious disease to chronic disease because it is not a matter of one being more important than the other.

Infectious diseases and chronic diseases are inextricably linked to each other. Limiting infectious disease research would exacerbate chronic disease states, as communicable diseases play a crucial role in their development. For example, ongoing research suggests infections from things like herpes, syphilis, and pneumonia contribute to the development of neurological issues like Alzheimer’s. Moreover, HIV research has been integral in the advancement of treatments and understanding of chronic diseases. HIV research has led to a deeper understanding of the immune system. Knowledge concerning how the body identifies and targets infected cells is derived from HIV research. Lentiviruses function in a similar way to HIV, which led scientists to use lentiviruses in gene therapy to treat maladies such as blood cancers. The infectious Epstein-Barr virus has been associated with lymphoma, lupus, and multiple sclerosis.

Dismantling the current infrastructure to consolidate and reform under the AHA umbrella may be a setback because knowledgeable staff with valuable expertise and networks have already been laid off through reductions in force (RIFs). Recreating effective teams does not happen overnight and cannot be reconstituted with RFK Jr’s proposed reductions in funding. Additionally, chronic disease research, assessment, and prevention require analysis of data acquired through proper surveillance. Jerome Adams, surgeon general during Trump’s first administration, is quoted as stating, “Surveillance capabilities are crucial for identifying emerging health issues, directing resources efficiently, and evaluating the effectiveness of existing policies…Without robust data and surveillance systems, we cannot accurately assess whether we are truly making America healthier.”

The AHA agenda aims to investigate the “true” root causes of chronic diseases. However, a dearth of quality research already exists. Additionally, factors like obesity and environmental exposure have been proven to be causal factors of chronic disease. However, those issues have etiologies related to conditions such as socioeconomic status. Unfortunately, JFK Jr and the Trump Administration have described research in health disparities and health equity as lacking scientific merit and purpose. This is unfortunate when research of this nature is effective. A study that investigated disproportionate levels of mortality from COVID-19 among minorities resulted in improved efforts that led to a reduction of the racial gaps in vaccination rates, saving lives.

RFK Jr. has done nothing to generate trust in his vision or demonstrate the ability to make sound public health decisions. He recently released a health commission report on children’s chronic issues that was touted as gold-standard science. Instead, experts have proven many of the studies referenced in the report were mischaracterized, were of dubious merit, some having touted messaging that has already been debunked by evidence-based science, and seven studies referenced were fraudulent, having been complete fabrications. This behavior is further complicated by Kennedy's description of established peer-reviewed medical journals, such as The Lancet and the New England Journal, as corrupt. As an alternative, he expressed the possibility of creating government-run journals.

Divesting from infectious disease control and prevention will assuredly increase our chronic illness burden. Focusing efforts on chronic disease topics that are not significant factors in the most pressing public health needs diverts discourse and resources from issues that truly matter, ultimately harming the population. As JFK Jr.’s budgetary plans continue to develop, it is imperative to continually ask questions that shine a light on the opaque nature of his messaging and desired implementation.

Equal Health Policy is Queer Liberation

The month of June is recognized globally as Pride Month for the LGBTQ+ community. Set in motion at Stonewall and in my home of Kansas City where organizers of the movement met in 1966. It is a time to recognize those who have come before us, the progress we have made, and the continued commitment to live and love freely, authentically, and visibility.

The fight for equality has never been without its legislative setbacks, The Defense of Marriage Act, Don’t Ask, Don't Tell, and California’s Proposition 8. In recent years, a disturbing trend has emerged across the United States and beyond: a wave of legislation that directly targets the LGBTQ+ community—particularly transgender individuals—under the guise of public health, education, or religious freedom. While often framed as matters of morality or parental rights, these laws have very real and dangerous consequences for the health and well-being of our communities. The political weaponization of identity not only marginalizes communities but creates systemic barriers to healthcare access, exacerbating existing disparities such as houselessness, substance misuse, and mental health. 

“In an era where queer lives are being legislated out of public existence and public health is being gutted for political theater, allyship means more than rainbow logos—it means resistance. It means leveraging your voice, your access, and your platforms to push back loudly, not later.” - Travis Manint, Director of Communication Community Access National Network

The Legislative Landscape: An Escalating Crisis

From bills banning gender-affirming care for youth, anti-DEI initiatives, and restricting LGBTQ-inclusive education, to efforts allowing providers to deny care based on religious beliefs, the legal attacks on LGBTQ health are mounting. In 2024 alone, hundreds of anti-LGBTQ bills were introduced across state legislatures—many of them passing into law.

Additionally, the suggestion of any cuts to HIV funding, including prevention, takes many back  to times in our history when the Regan administration turned their backs on our community, and allowed an entire generation to be wiped out, citing moral panic as a reason to deny federal funding.  

These measures are not benign. When transgender youth are denied access to hormone therapy or counseling, their mental health suffers, and a community more likely to consider suicide When schools are forbidden from discussing LGBTQ topics, students lose access to information that affirms their identities. And when healthcare providers can legally refuse to treat LGBTQ patients, trust in the healthcare system erodes. Each policy sends the wrong message: you do not belong, and you are not safe here.

The Health Consequences of Discrimination

LGBTQ youth experience houselessness at a rate far higher than their peers, with some studies indicating they are 120% more likely to experience it. While only 7% of the overall youth population identifies as LGBTQ, they comprise up to 40% of homeless youth. This disparity is particularly pronounced for transgender and nonbinary youth, with some research suggesting they experience houselessness at even higher rates. Houselessness is not limited to LGBTQIA+ youth, Sexual minority adults are twice as likely as the general population to have experienced homelessness in their lifetime. 

Substance misuse is highly prevalent among LGBTQ+ persons, data on the rates of substance abuse in gay and transgender populations are sparse, it is estimated that between 20 percent to 30 percent of gay and transgender people abuse substances, compared to about 9 percent of the general population, yet affirming treatment centers for our community continue to be scarce. In 2021, over half of LGBTQ youth (56%) used alcohol in the last year, including 47% of LGBTQ youth under the age of 21. Over one in three LGBTQ youth (34%) used marijuana in the last year, including 29% of LGBTQ youth under the age of 21. One in 10 (11%) LGBTQ youth reported having used a prescription drug that was not prescribed to them in the last year, and this rate was the same for those under and over the age of 21. The stress that comes from daily battles with discrimination and stigma is a principle driver of these higher rates of substance use, as gay and transgender people turn to tobacco, alcohol, and other substances as a way to cope with these challenges.

Research has consistently shown that LGBTQ individuals face disproportionately high rates of mental health conditions, substance use, and chronic illness—not because of their identities, but because of the stigma and discrimination they face. According to the CDC, LGBTQ youth are more than four times as likely to attempt suicide compared to their non-LGBTQ peers. Transgender individuals face elevated risks of depression, anxiety, and suicidal ideation, especially when denied gender-affirming care. According to the Trevor Project 39% of LGBTQ+ young people seriously considered attempting suicide in the past year — including 46% of transgender and nonbinary young people.  

Policy plays a pivotal role in either perpetuating or addressing these health disparities. Restrictive laws not only block access to care but foster environments of fear, alienation, and trauma. Conversely, affirming policies—such as nondiscrimination protections, inclusive data collection, and funding for LGBTQ+-specific services—create pathways to health equity.

LGBTQ+ Health Must Be a Policy Priority

Healthcare policy should be a tool for protection, not persecution. We must hold legislators accountable when they propose or support bills that endanger LGBTQ+ lives under the guise of “protecting children” or “religious liberty.” At the same time, we must uplift and support policies that affirm identity, improve access, and invest in LGBTQ+ health. Prioritizing LGBTQ+ health is not a matter of inclusion—it’s a matter of survival. Our laws should reflect the values of dignity, equity, and compassion. 

In an environment where our very existence is being attacked in legislative sessions, it is time we draw from our history, become voices, not victims, and for our allies to stay engaged. It is our turn to make history, demanding better of our lawmakers. Because at the end of the day affirming, culturally competent, equitable LGBTQ+ healthcare is Queer liberation.

Strengthening Caregiving Infrastructure is Fundamental to a Healthy American Society

John’s Hopkins defines a caregiver as a person who tends to the needs or concerns of a person with short- or long-term limitations due to illness, injury, or disability. On June 24, 2025, PBS will air a documentary on the multifaceted landscape of caregiving executive produced by Bradley Cooper and narrated by Uzo Aduba. The documentary explores the history of various aspects of caregiving in the United States, with a focus on the lived experiences of care providers, particularly family caregivers who provide care in the home. The documentary is timely, given how caregiver support could be affected by the present-day potential changes to Medicaid and other healthcare funding changes. The caregiving continuum spans from birth to the end of life, yet the caregiving infrastructure in the United States is insufficient.

Caregiving in the United States is both paid and unpaid, provided by professionals and laypeople. Caregiving encompasses a wide range of services, including daycare, preschools, in-home care, nursing homes, and more. Notably, according to 2020 data from AARP, around 53 million Americans give unpaid care in the home. This level of effort is by necessity, not by choice. Paying for private care services is prohibitively expensive, and loved ones prefer those in need to be in the surroundings of their own homes, living through long-term health challenges, as opposed to institutions. Home surroundings are especially desired regarding end-of-life issues.

The current U.S. healthcare infrastructure is not sufficient to meet the needs of caregivers and those they care for. Nursing homes are where some individuals with long-term significant care needs find themselves because they don’t have any family to take care of them or their family is ill-equipped to meet their needs. While Medicaid will pay 100 percent of the costs of nursing homes, the logistics of the coverage is problematic.

Medicaid coverage of nursing home care requires specific financial and health conditional requirements. In general, the financial eligibility criteria mean that a person in need must have very little in assets. If a patient does not qualify for Medicaid financially, they essentially have to spend down all their assets until they reach the required level of poverty. Additionally, in some states, the state will go after possession of a patient’s home if there is a home in their name at the end of their life. It’s referred to as Medicaid estate recovery, where a lien is placed on the home to recover some of the funds spent on long-term institutional care.

This is damaging, as it undermines the home's ability to remain in the family as a means of generational wealth. Moreover, if relatives are living in the house, they lose their place of domicile. Medicare, on the other hand, does not pay for any long-term care, such as nursing homes. Medicare will only pay for short-term care, documented medically necessary care in skilled nursing facilities such as rehabilitation homes after someone has been inpatient in a hospital. Patients who have significant care needs but do not require a level of care demanding enough to meet Medicaid criteria or do not qualify for Medicaid financially have to be cared for at home.

Having been a multi-year primary caregiver of my mother, who dealt with multiple healthcare issues, I understand first-hand the demands of being an at-home caregiver. I was not trained to be a caregiver. I was unaware of resources available to help me care for her, nor were hospitals or outpatient clinics any significant help in navigating her increasing needs from year to year. When it got to the point where she couldn’t walk, feed herself, get out of bed to relieve herself, bathe, or groom, the responsibility fell upon me as her only child.

I had to navigate taking care of all of her physical and medical needs while trying to financially support myself and attempt to flesh out a modicum of normalcy in my life. Although I was fortunate to work from home, it was challenging to balance my demanding data analysis position with her care needs. It was painful to hear her calling out for me while I was in the middle of a meeting or presentation, whether those I was interfacing with could hear her or not. I was not concerned if someone heard her faintly from down the hall during virtual meetings. It was painful because I always let her know when I had meetings scheduled so I could take care of her needs preemptively before the events. Thus, hearing her call out for me meant that it was a serious, urgent need, knowing that she always felt like she was being a burden and tried not to disturb me unless she urgently needed to.

Her financial situation did not qualify her for Medicaid, especially given her retirement and social security benefits. She had Medicare, which was partially paid for through her employer as part of her retirement benefits. While Medicare paid for her medications, it did not cover care needs related to day-to-day living. Medicare would not pay for a nurse or trained care individual to come in daily or several times a week to give her a proper bath once she could no longer bathe herself, thoroughly make sure her private areas were cleaned adequately after bodily functions, make sure all her bodily skin folds were powdered and dressed, and so much more. For example, I knew that any time she relieved herself of solid waste while bedridden, that meant one to two hours of time it would take me to properly get her taken care of as she couldn’t help me move her body to tend to her needs.

After I talked in depth with her primary care doctor, Medicare agreed to pay for a basic home hospital bed that allowed me to raise her up to make her comfortable and raise her legs when necessary. Medicare paid for a lower extremity lymphedema pump air compression recovery boot system for her swollen legs that sometimes developed sores, which I had to dress and clean. She was overweight, in addition to being unable to mobilize herself. Thus, after petitioning a doctor who attended to her after one of many inpatient stays, Medicare paid to rent a Hoyer lift so that I was able to lift her to change the bed or help put her on stretchers at times I had to call EMS. Although Medicare paid for renting these items after many rounds of begging and discussions, they would not pay for someone to come in and help me utilize the tools.

I had to learn how to use them on my own. The only time Medicare paid for anyone to come into the home was when some of her leg wounds and bed sores exacerbated to the point of justifying once-a-week home health visits to take care of them. Most importantly, those visits were only temporary. Once they had healed to the point where she was evaluated as not requiring weekly paid care, the visits stopped. I had to learn the involved processes from the home health nurses and how to administer care on my own. They would even order extra supplies to send to our home so that Medicare would cover them, rather than my mother and I having to buy them ourselves.

The aforementioned is only a small part of the realities of being an at-home caregiver. However, it is a window into the kind of support that caregivers and patients need. There need to be payment innovations that provide funding for things like home care beyond temporary skilled nursing needs. When patients with significant needs are discharged back into their homes after inpatient stays, there needs to be robust networks of after-discharge support that include inquiring about the needs of caregivers and those they care for.

Chronic condition care often requires numerous durable medical goods and disposable medical products that Medicare and private insurance do not cover. A system that helped caregivers with some of the financial burden of those needs would prevent families from financial ruin. For example, since my mother was bedridden, she obtained a device called a Pure Wick system that was a means to relieve urination without the complications of skin breakdown from wetting adult diapers. We had to pay out of pocket for the single-use catheters used for the device, which cost $150 per month in addition to all of the other many care products used on a daily basis.

There are many reasons why people end up in a long-term home care situation. There needs to be infrastructure in place at the local level to fill the gaps and meet needs financially, emotionally, and physically. Presently, a company like Trualta has the right idea. It is an online platform that provides caregivers with access to various training, support, and a way to interact with other caregivers.

However, vast improvements in government infrastructure are needed to effectively remedy home health care needs. The current potential detrimental changes to Medicaid and Medicare present an exacerbation of the status quo instead of a solution. Only 10 states have any means of compensation for family caregivers, and just 13 have paid family and medical leave. Caregiving is not a private issue to be lived through in darkness and silence. Ensuring a robust and stable caregiving continuum from birth until the end of life is the only way to ensure an economically stable and medically healthy society.

CMS Draft Guidance Creates Regulatory Vacuum in 340B Drug Pricing

The Centers for Medicare and Medicaid Services (CMS) released its draft guidance for the Medicare Drug Price Negotiation Program in May 2025, offering operational improvements like using Wholesale Acquisition Cost (WAC) for standardized refund calculations. Yet beneath these technical refinements lies a critical policy failure: CMS's refusal to mandate federal claims modifiers for affected transactions and contradictory programs. This decision creates a regulatory vacuum that enables systematic duplicate discounts worth billions annually while sidelining patient experiences.

By abdicating responsibility for duplicate discount prevention and suggesting retrospective payment models that could strain smaller entities, CMS has created an environment where unscrupulous actors can exploit loopholes as state laws increasingly block the transparency mechanisms needed for program integrity. The contrast is stark—CMS requires mandatory "TB" modifiers for Part B inflation rebates but makes them voluntary for Maximum Fair Price (MFP) effectuation, creating an inconsistent regulatory framework that undermines program integrity.

"CMS had an easy answer right in front of them," says Jen Laws, CEO of the Community Access National Network (CANN). "Claims modifiers are an already existing tool within the scope of Medicare claims and instead agency officials opted to offer more than 220 pages worth of justifying why they won't mandate the information and not one page was dedicated to appreciating how such a fragmented approach might harm patients. The only mention we got was off handed references about maybe listening to patient advocacy organizations - which didn't go so well for us during the initial listening sessions of drug selection. Honestly, it's all entirely baffling."

The Mechanics of Duplicate Discounts and Why Modifiers Matter

Without clear claims identification, the same drug unit may receive multiple discounts—340B pricing plus Medicare rebates or Medicaid rebates—creating billions in inappropriate financial flows. Federal law (42 USC 256b(a)(5)(A)(i)) explicitly prohibits duplicate discounts between 340B and Medicaid rebates on the same drug unit, yet enforcement remains weak. While this might seem fine, no specified benefit is required to flow to patients and these factors incentivize ever increasing, uncontrolled costs within the healthcare ecosystem.

The scope of this problem is staggering. IQVIA estimates $20-25 billion in duplicate discounts annually across the industry. A Government Accountability Office (GAO) audit found that 25% of audited 340B programs had duplicate discount errors, with 264 of 429 cases caused by inaccuracies in the Medicaid Exclusion File system (MEF) itself. For context, some states seeking to prohibit claims modifier requirements cite use of the MEF—these inaccuracies and resulting duplicate discounts highlight the flaws of this approach.

The exploitation extends beyond duplicate discounts. Contract pharmacy fees extract over $1 billion annually from the 340B ecosystem, with CVS's third-party administrator (TPA) operation alone collecting over $350 million in fees over a few years according to Senate HELP Committee inquiry.

"Statutorily prohibited duplicate discounts are one of the many ways the 340B program is exploited as a profit-making tool by large hospital systems and for-profit contract pharmacies," explains Kalvin Pugh, State 340B Policy Director at CANN. "A simple claims modifier would ensure that this guidance prevented continued abuse and taken a step forward in much-needed accountability."

Despite misleading statements to the contrary, claims modifiers do not risk patient privacy. Claims modifiers function as digital markers using de-identified information to tag individual claims as 340B, similar to Medicare claims, enabling automated systems to exclude them from other rebate calculations. Without this technical infrastructure, PBMs can attempt "illicit rebate grabs" on 340B drugs, and covered entities can divert Medicaid rebates that should be reinvested in state programs directly to their own entities. These exploitations drive up the overall cost of medication and care for patients, either directly by profiteering off of patients and not passing on those discounts or by way of increased private insurance premiums as justified by increased billing across the healthcare ecosystem.

State Medicaid Programs Bear the Cost of Federal Inaction

The absence of mandatory claims modifiers enables duplicate discounts that drain state Medicaid rebate programs of billions annually, forcing difficult choices between expanding access and protecting limited state resources. While the pending Reconciliation Bill making its way through the Senate includes provisions to prohibit 340B spread pricing in Medicaid programs—as was seen in the December 2024 Continuing Resolution prior to it being gutted—efficient and effective compliance requires a claims modifier.

A Health Management Associates study found that 9 states position that manufacturers should seek recoupment from providers rather than reducing state rebate payments. The Texas experience illustrates the real-world consequences—when the Texas Legislature considered legislation that would have expanded 340B contract pharmacy use without oversight or revenue-sharing requirements, the fiscal note projected the state's HIV Medication Program would become 'insolvent by 2027' with an estimated $72 million shortfall over a multiyear period. This demonstrates how policy changes affecting 340B identification can directly threaten state programs serving vulnerable populations, while some states implemented comprehensive carve-out policies removing all 340B drugs from managed care to avoid such complications entirely.

"State programs will lose out on numerous rebates by offering the option to use the often lower 340B discount instead of the Medicaid price," Pugh explains. "This will strain state resources and put vulnerable impoverished communities at risk of losing access to lifesaving healthcare and medications."

In non-fee-for-service states, choosing the 340B rate over the Medicaid rate diverts rebate value away from Medicaid program reinvestment, effectively divesting from state programs that serve vulnerable populations. This interaction between 340B and Medicaid creates perverse incentives that undermine both programs' effectiveness.

CMS's Abdication of Responsibility Creates a Regulatory Vacuum

By declaring it "will not, at this time, assume responsibility for deduplicating discounts", CMS has created a regulatory vacuum that enables bad actors while burdening manufacturers and providers with piecemeal solutions.

The consequences of this abdication are far-reaching. At least 12 states have enacted laws restricting 340B claims modifier requirements or data sharing. CMS provides limited oversight of state Medicaid duplicate discount prevention efforts, leaving this responsibility to states, which are not always sufficiently funded or staffed to meet this responsibility. The Indiana situation exemplifies this chaos—former state officials filed a "whistleblower" lawsuit alleging "tens, likely hundreds" of millions of dollars of Medicaid fraud by hospital systems and managed care entities (PBMs by any other name), partly due to inadequate state oversight.

According to insights from interviews with former and current Medicaid directors and pharmaceutical policy experts in 14 states, the Health Resources and Services Administration (HRSA) has been faulted with inconsistent and weak enforcement of 340B duplicate discounts due to lack of data transparency. The GAO review found that only 4 of 13 covered entities had accurate descriptions of state Medicaid policies.

"While CMS might be about to assume some of HRSA's responsibilities with regard to 340B, it seems the agency is prepared to repeat HRSA's abdication of responsibility," Laws notes. "The IRA's interaction with 340B under this draft guidance systematizes the absolute headache covered entities, manufacturers, and patients already have with one program and just...duplicates it."

Retrospective Payment Models Threaten Safety-Net Provider Viability

The shift from prospective 340B discounts to retrospective payment models could create existential cash flow threats for smaller safety-net providers who lack working capital to absorb payment delays. While the draft guidance offers a rubric for manufacturers to assess entity financial sustainability and requires manufacturers to enact individualized action plans, this approach is clumsy and not foolproof, nor does the guidance suggest how smaller entities might efficiently comply with a patchwork of manufacturer assessment tools.

The financial reality for true safety-net providers is bleak. Nearly 45% of rural hospitals operate with negative margins, making 340B savings vital for maintaining operations. 93% of rural hospitals report relying on 340B savings to help keep their doors open. However, rural hospitals average only $2.2 million in annual 340B savings, compared to $11.8 million for all hospitals. Compliance costs range from $100,000 to $200,000 annually, regardless of hospital size, posing a significant burden on these facilities.

The timing requirements compound these challenges. The 14-day MFP payment window plus manufacturer 45-day lookback requirements create complex compliance deadlines that smaller entities may struggle to meet.

CMS also fails to contemplate the natural and expected outcome of confusing and potentially conflicting billing for patients. People already face challenges determining actual payments due when engaging in critical care for chronic and complex health conditions. Bills may come slow or arrive with differing amounts due based upon claims adjudication. A complex retrospective payment process as suggested by CMS will only further exacerbate this issue.

Technical Infrastructure: Why Modifiers Are the Solution

Claims modifiers represent proven, existing technical infrastructure that could solve the identification problem with minimal additional burden on providers already using similar systems. Think of claims modifiers as digital tags—simple two-digit codes that healthcare providers already add to insurance claims to provide additional information about services without changing the fundamental billing process. The "TB" modifier became the universal 340B identifier for all covered entities when billing Medicare Part B starting January 1, 2025.

The key point is that this infrastructure already exists for Medicare—extending similar requirements to the Medicare Drug Price Negotiation Program would simply apply proven technology consistently across federal programs rather than creating new systems. Furthermore, False Claims Act liability creates potential fines up to $10,000 per incorrect Medicare entry, ensuring accuracy and proper use of these digital markers.

The Path Forward Requires Federal Leadership

The public comment period for CMS's draft guidance closes on June 26, 2025, representing a critical opportunity for stakeholders to advocate for mandatory modifiers.

"We had some high hopes for a more thoughtful and, frankly, direct approach to our already fractured healthcare system with this guidance," Laws reflects. "The draft, as it is, is a mess. Mandating a claims modifier is a direct and elegant answer that would require far less wasted ink. Despite this Administration's claims to the contrary, here we are watching draft guidance unfold that will perpetuate a system prone to fraud and abuse. And patients? Our experiences in the middle of all of this? We're an afterthought. It's just completely unacceptable. The only way systems meet patient needs is by starting with us. This is not that and CANN is prepared to be loud and clear about that fact."

A mandatory federal claims modifier can provide the systematic solution needed to protect safety-net providers and ensure program integrity. Technical fixes aren't enough—comprehensive policy reform is needed. The stakes are too high, and the patients we serve deserve better than regulatory half-measures that enable exploitation while threatening the safety net they depend on for survival.

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

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

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

The Magnitude of Proposed Cuts

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

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

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

Impact on Health Coverage and Access

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

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

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

The Mirage of Medicaid Work Requirements

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

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

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

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

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

Transparency and Public Input Concerns

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

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

Implications for Patients and Advocates

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

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

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

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

Antibiotic Crisis: Hope Amid Institutional Decline

The fight against antimicrobial resistance (AMR) in sexually transmitted infections (STIs) stands at a critical crossroads. Despite a slight decline in U.S. STI rates in 2023, resistance to antibiotics continues to rise globally, particularly for gonorrhea. This creates a paradox: while we're seeing promising new treatments advancing toward approval, recent political decisions have dramatically weakened our ability to track resistance patterns. Meanwhile, funding and policy support for developing new antibiotics remain inadequate. This crisis demands urgent attention as resistant infections spread faster than new treatments can be developed, with serious implications for public health and patient care.

The Growing Threat of Antibiotic-Resistant STIs

For people living with chronic conditions or compromised immune systems, antibiotic-resistant STIs aren't just a public health statistic—they represent a serious and growing threat to wellbeing. While the Centers for Disease Control and Prevention (CDC) reported fewer gonorrhea cases in the U.S. last year, the global picture is far more concerning.

Gonorrhea is becoming increasingly resistant to our last effective treatments. In Southeast Asia, the World Health Organization (WHO) identified a three-fold increase in extensively drug-resistant gonorrhea strains in Cambodia between 2022 and 2023. These hard-to-treat infections now make up over 12% of cases in the region.

What does this mean for patients? When first-line treatments fail, people face longer infectious periods, more complex and expensive treatments, and greater risk of complications. For people living with HIV or hepatitis C, these resistant infections can further compromise health and complicate disease management.

Breakthrough Treatments on the Horizon

Despite the grim outlook, two novel antibiotics represent genuine breakthroughs in the fight against resistant STIs after decades without new gonorrhea treatments.

Zoliflodacin, developed through a Global Antibiotic Research & Development Partnership (GARDP) and Innoviva Specialty Therapeutics partnership, completed the largest Phase 3 trial ever conducted for gonorrhea, with promising results. While its 91% cure rate appears slightly lower than the current standard's 96%, zoliflodacin's significance lies in its novel mechanism of action against resistant strains and its oral administration route. As resistant gonorrhea increasingly requires injectable treatments, an effective oral option represents a major advance for both accessibility and patient care.

Equally promising is gepotidacin, developed by GSK and already FDA-approved for urinary tract infections as of March 2025. This novel antibiotic showed a 92.6% success rate against gonorrhea through its unique dual-targeting mechanism that inhibits two critical bacterial enzymes, making it effective against resistant strains. GSK plans to submit for the gonorrhea indication later in 2025.

These developments showcase complementary partnership models: GARDP's non-profit approach ensures zoliflodacin's availability in low-income countries, while gepotidacin demonstrates successful public-private partnership between GSK and BARDA. Despite these advances, the WHO reports the broader antibiotic pipeline remains critically thin, with only 12 truly innovative antibiotics among 32 in development, and just 4 targeting the most critical pathogens.

Political Decisions Undermining Public Health

In a dangerous contradiction, just as resistance is rising and new treatments are on the horizon, political decisions have severely weakened our ability to monitor and respond to these threats.

Since early 2025, the current administration has eliminated approximately 20,000 jobs across health agencies and proposed cutting the HHS budget by about 26% ($127 billion).

The impact on STI programs has been particularly severe. The Washington Post reported that all 27 scientists at the only U.S. facility capable of tracking hepatitis outbreaks were fired. Additionally, 77 CDC staff members working on STI prevention were let go, including 49 experts embedded in state health departments who provided critical support to local efforts.

Most alarming for people at risk of STIs is the closure of the specialized lab that tests gonorrhea samples for antibiotic resistance. This lab was our early warning system—without it, doctors and patients won't know which antibiotics still work until treatment failures start mounting.

Prevention Strategies: Interrupting Transmission Chains

While developing new antibiotics is critical, prevention remains essential. Doxycycline Post-Exposure Prophylaxis (DoxyPEP) has emerged as an effective tool for breaking transmission chains. The CDC now recommends that men who have sex with men and transgender women with a history of bacterial STIs use DoxyPEP after sexual encounters.

Real-world data from San Francisco showed significant declines in chlamydia and syphilis among those using DoxyPEP, though gonorrhea reductions were less dramatic. While some concerns exist about the potential for DoxyPEP to contribute to broader antibiotic resistance, current evidence suggests this approach can effectively reduce STI transmission in high-risk groups—a crucial tool while we wait for new treatments.

The Funding Gap and Market Failure

The fundamental problem in antibiotic development is an economic one: the market doesn't adequately reward the creation of new antibiotics, especially those held in reserve to combat resistance.

The experiences of both zoliflodacin and gepotidacin highlight this challenge. Zoliflodacin required non-profit involvement through GARDP to advance through clinical trials, while gepotidacin needed significant government funding through BARDA. As Henry Skinner of the AMR Action Fund notes, "The funds needed to support this ecosystem, particularly in late-stage development, won't be there in a couple of years unless something unanticipated happens."

The AMR Action Fund, backed by pharmaceutical companies, aims to invest $1 billion to bring 2-4 new antibiotics to patients by 2030. The Fund has deployed over $100 million in capital to companies developing promising antimicrobials. However, experts recognize this as a stopgap measure rather than a solution to the underlying market failure.

A more sustainable approach is proposed in the PASTEUR Act, which has been introduced in multiple congressional sessions without passing. This legislation would create subscription contracts with developers of critical antimicrobials, ensuring financial returns regardless of how sparingly the drugs are used—essentially paying for access rather than volume.

This "Netflix model" for antibiotics would help align public health needs with market incentives. However, despite bipartisan support, the Act faces an uncertain future in the current political climate of budget cutting and deregulation.

Disproportionate Impact on Vulnerable Communities

Antimicrobial resistance operates within complex syndemics, where multiple health conditions interact and amplify each other within populations experiencing social inequities. People living with HIV stand at the intersection of these overlapping epidemics.

Research shows people living with HIV have higher rates of drug-resistant gonorrhea co-infection, each condition worsening the other. This syndemic intensifies with hepatitis C—a Department of Veterans Affairs study found 37% of people with HIV were also HCV-positive, with significantly higher rates of mental health issues and substance use disorders among these co-infected patients.

Among people who inject drugs with HIV, HCV rates reach up to 71% in some settings, according to a global review. These aren't coincidental occurrences—structural factors create environments where these epidemics cluster and interact.

The dismantling of surveillance infrastructure creates a dangerous blind spot in tracking these syndemics. Without specialized CDC labs monitoring resistant gonorrhea, we've lost our early warning system for emerging resistance patterns in vulnerable communities. Simultaneously, new restrictions on health equity research effectively discourage scientists from studying social factors that increase vulnerability to antimicrobial resistance.

A Patient-Centered Path Forward

From a patient and advocate perspective, five key policy areas require immediate attention:

1. Restore critical infrastructure. The dismantling of STI surveillance labs has left both patients and providers flying blind. Congress must fund restoration of these capabilities and hold administration officials accountable so we can track resistance patterns, update treatment guidelines, and support state and local health departments.

2. Support innovative development models. The GARDP partnership for zoliflodacin and the GSK-BARDA collaboration that produced gepotidacin demonstrate effective approaches to antibiotic development. These models—balancing commercial viability with public health needs—warrant expanded funding and replication.

3. Implement pull incentives. The PASTEUR Act would create a subscription-based model rewarding companies for developing critically-needed antibiotics without encouraging overuse, aligning market incentives with public health priorities.

4. Strengthen integrated care models. People at highest risk of resistant infections often face multiple health challenges. HIV, HCV, and STI services should be integrated to address overlapping needs, following the Ryan White HIV/AIDS Program's comprehensive care model.

5. Expand prevention strategies. While new treatments are essential, preventing infections reduces suffering and limits resistance. Expanded access to DoxyPEP, increased STI screening in high-risk populations, and vaccine research represent critical prevention strategies.

The antimicrobial resistance crisis in STIs reveals a stunning act of self-sabotage: just as scientific innovation finally delivers promising new treatments like zoliflodacin and gepotidacin, the misguided decimation of public health infrastructure has crippled our ability to track and respond to resistant infections. This isn't poor timing—it's the cavalier dismemberment of critical surveillance systems by ill-equipped partisans wielding policy chainsaws with no regard for consequences. The resulting wreckage threatens to undo decades of progress against STIs, particularly for communities already navigating systemic barriers to care.

The path forward demands both hope and principled outrage. Patients and advocates must forcefully reject further cuts to public health infrastructure, demand immediate restoration of STI surveillance capabilities, and hold elected officials accountable for the consequences of their decisions. We must insist on passage of the PASTEUR Act to fix the broken economics of antibiotic development while ensuring that promising science reaches those who need it most, not just those with wealth, power, and access.

The High Cost of Middlemen Medicine

For millions of Americans, the promises of modern medicine are starting to sound a lot like a scam. Despite breakthrough treatments and historic R&D investments, every year more and more people can’t actually afford the medications that could save or improve their lives. They’re stuck navigating a labyrinth of AI-powered insurance denials, sky-high out-of-pocket costs, and middlemen who profit precisely because access is so difficult.

The numbers don’t lie. In 2024, Americans spent $98 billion out-of-pocket on prescription drugs—a 25% increase over five years, according to research from the IQVIA Institute. This burden falls hardest on people with chronic illnesses, who are often forced to choose between staying alive and staying solvent.

The Growing Burden of Out-of-Pocket Costs vs. Net Drug Prices

Here lies one of the most troubling contradictions in our prescription drug system: while patients are paying more, manufacturers' net prices have grown at dramatically lower rates. According to IQVIA data, protected brand drug net prices increased by merely 0.1% in 2024, following several years of flat or negative growth. Meanwhile, out-of-pocket costs for patients have risen substantially, with the aggregate burden growing 25% since 2019.

This widening gap between patient costs and manufacturer net prices points directly to a dysfunctional system where middlemen capture an increasing share of value. For brand-name medications—often the only options for certain conditions—commercially insured patients saw their costs rise from $20.02 to $25.07 over five years, while cash-paying patients now face average costs of $130.18 per prescription based.

The difference between list prices (what insurers use to calculate patient cost-sharing) and net prices (what manufacturers actually receive after rebates and discounts) has grown to approximately 52% across all medicines. In diabetes treatments, this gap is particularly stark—net prices are 77.5% below list prices, yet patients pay cost-sharing based on those inflated list prices rather than the heavily discounted prices their insurers actually pay.

The burden of these costs falls heavily on specific populations. Nearly half (46%) of insured Americans report that if diagnosed with a chronic illness or experiencing a major medical event, their out-of-pocket costs would be either "expensive" or "more than they could afford." This concern rises to 59% among Black Americans and 57% among those with government insurance.

PBMs: Profiting at Patients' Expense

The growing disparity between net prices and patient costs can be traced directly to the rise of Pharmacy Benefit Managers (PBMs), who have positioned themselves as essential intermediaries in the prescription drug supply chain. These entities manage prescription drug benefits for health insurers, self-insured employers, and government programs, negotiating with drug manufacturers and pharmacies while setting the terms for patient access.

The PBM market is highly concentrated, with three major companies—CVS Caremark, Express Scripts, and OptumRx—controlling approximately 80% of the market. Their business practices raise serious concerns about whose interests they truly serve.

A particularly troubling practice is how PBMs handle manufacturer rebates. While PBMs negotiate substantial discounts from drug manufacturers—sometimes exceeding 70% of a drug's list price—these savings rarely benefit patients directly. Instead, PBMs often retain a portion of these rebates and pass the remainder to insurers, who may use them to lower premiums slightly across all enrollees rather than reducing costs for the patients actually taking the medications.

According to Federal Trade Commission findings, the "Big 3 PBMs" marked up numerous specialty generic drugs by hundreds or thousands of percent, generating "more than $7.3 billion in revenue from dispensing drugs in excess of estimated acquisition costs from 2017-2022" as documented in Congressional testimony. This practice known as "spread pricing"—charging plan sponsors more than they pay pharmacies for the same drug and pocketing the difference—has drawn increasing scrutiny from regulators and lawmakers.

The public strongly supports reform in this area. Research from the Pharmaceutical Research and Manufacturers of America’s (PhRMA) Patient Experience Survey found that 64% of insured Americans strongly support "cracking down on abusive practices by PBMs and health plans like inappropriate fail first (step therapy) and prior authorization." Additionally, 63% strongly support requiring health insurers and PBMs to pass on any rebates or discounts they receive from pharmaceutical companies to patients at the pharmacy counter.

Insurance Barriers: When Coverage Doesn't Mean Access

Beyond cost concerns, insured Americans face substantial barriers to accessing prescribed medications. In the past year, 41% of people taking prescription drugs encountered at least one insurance-imposed barrier to accessing their medication.

The most common obstacles include:

• Prior authorization requirements (22%)

• Formulary exclusion (21%)

• Quantity limits (10%)

• "Fail first" (step therapy) policies (9%)

These barriers have real consequences. Across all payer types, 27% of written prescriptions go unfilled due to a combination of payer rejections and patient abandonment. In Medicaid, this figure rises to 34%, with a significant portion due to prior authorization rejections according to IQVIA research.

The problem is even more pronounced for newer medications. For novel drugs launched in 2022 and 2023, a staggering 56% of new prescriptions went unfilled, with only 29% of patients with chronic conditions remaining on these medications after one year. Among the reasons cited, insurance barriers were the primary factor, with 39% of prescriptions for these drugs rejected by all payers.

The Fleecing of 340B

The 340B Drug Pricing Program was created to help safety-net providers "stretch scarce federal resources" for vulnerable populations, requiring pharmaceutical manufacturers to provide substantial discounts to qualifying healthcare organizations. The program has grown dramatically, reaching $66 billion in total purchases in 2023 according to Drug Channels analysis. What's driven this growth is the explosive expansion of contract pharmacy arrangements—from about 1,300 in 2010 to over 33,000 pharmacy locations today—transforming what was intended as targeted assistance into a revenue source for hospitals and pharmacies, with questionable benefit to vulnerable patients.

In response to perceived abuses, approximately 37 drug manufacturers have imposed restrictions on their participation, specifically limiting 340B pricing through contract pharmacies. The concern is justified: a 2022 analysis by the Alliance for Integrity and Reform of 340B found that many 340B hospitals provide less charity care than non-340B hospitals, despite their safety-net designation as reported in Becker's Hospital Review. Meanwhile, nonprofit hospital systems pursue debt collection against patients who should have qualified for charity care under the hospitals' own policies, according to ProPublica's reporting.

Public sentiment strongly favors reform, with 70% of Americans supporting "requiring hospitals to be more transparent about prescription medicine markups" and 57% supporting requirements that hospitals use 340B discounts to help low-income patients access needed medicines. While manufacturers have responded by limiting distribution to contract pharmacies, patient advocates push for reforms requiring 340B savings to directly benefit vulnerable patients through reduced medication costs or expanded services. Any meaningful reform must address this fundamental disconnect between the program's intent and its current operation.

Recent Policy Developments: Promise or Posturing?

In April 2025, President Trump signed yet another executive order titled "Lowering Drug Prices By Once Again Putting Americans First," which included provisions aimed at reforming the Medicare Drug Price Negotiation Program, improving transparency into PBM fee disclosure, and addressing anti-competitive behavior by drug manufacturers.

However, experts caution that executive orders have limited impact without legislative or regulatory action. As Ted Okon, executive director of the Community Oncology Alliance, noted: "Just so everybody understands the executive order, it doesn't have any authority. It's not statute...but I think it's very much a game plan of what is being signaled to the Congress, and if the Congress doesn't do it, HHS."

The executive order largely focuses on studies and recommendations rather than immediate action. For example, it directs the Secretary of Labor to "propose regulations" on PBM transparency and calls for "joint public listening sessions" on anti-competitive behavior by pharmaceutical manufacturers, with concrete reforms left for future consideration.

What Real Reform Looks Like

If policymakers are serious about fixing this mess, they need to stop nibbling around the edges and go after the structural rot:

1. Rebate pass-through: If PBMs get a discount, patients should benefit—not just insurers.

2. Ban spread pricing in all insurance markets. If it’s wrong in Medicaid, it’s wrong everywhere.

3. Delink PBM profits from drug list prices, so there’s no financial incentive to inflate costs.

4. Limit prior auths and step therapy, especially for chronic and life-threatening conditions.

5. Hold 340B entities accountable for how they use discounts to serve vulnerable patients.

6. Cap out-of-pocket costs for everyone, with special protections for those with chronic conditions.

These aren’t radical ideas. They’re popular, they’re practical, and they’re long overdue. 94% of insured Americans believe policymakers have a responsibility to protect access to affordable care. And 93% say insurance should work for everyone—not just the healthy, wealthy, or well-connected.

Enough Excuses. Patients Deserve Better.

The current system isn’t failing—it’s succeeding exactly as designed. Middlemen make billions. Insurers avoid risk. Hospital systems exploit safety-net programs for profit while vulnerable patients go without. And patients? They’re left panhandling through GoFundMes, skipping doses, or giving up entirely.

This isn’t just an affordability crisis. It’s a moral one. We know how to fix it. The question is whether we have the political will to stop protecting profit margins and start protecting people.

Mapping Injustice: Redlining's Legacy in HIV Treatment Delays

A new study from Tulane University reveals how discriminatory housing policies from decades ago continue to shape HIV care outcomes today. Published in JAMA Internal Medicine, the research shows that people living with HIV (PLWH) in historically redlined neighborhoods face 15% longer delays in achieving viral suppression compared to counterparts in non-redlined areas—193 days versus 164 days. These delays impact both patient health outcomes and broader public health efforts to prevent HIV transmission.

The Lasting Legacy of Redlining

Redlining—the practice where mortgage lenders marked certain areas with red lines to deny loans based on race or ethnicity—was officially abolished in 1968. Yet its consequences persist in the built environment, healthcare infrastructure, and social conditions that determine health outcomes.

The Tulane study analyzed 1,132 newly diagnosed patients in New Orleans between 2011 and 2019. Of these patients, 62% resided in formerly redlined neighborhoods. Most were men between ages 25-44 years, and despite New Orleans having a majority Black population, the study found a higher concentration of Black residents in redlined areas than in non-redlined ones.

The findings validate what many healthcare advocates have long observed: geography profoundly influences health. As senior author Scott Batey noted, "The association between redlining and health outcomes is not a new concept, but applying this lens specifically to HIV was novel." Even where gentrification has occurred, treatment delays remain—indicating that historical marginalization creates barriers that investment alone cannot remove.

Interconnected Barriers to HIV Care

What explains these persistent treatment delays? The answer lies in multiple overlapping structural barriers that create a healthcare access quagmire for PLWH in redlined communities.

Pharmacy Deserts

One-third of neighborhoods in major U.S. cities qualify as pharmacy deserts, with predominantly Black and Latino neighborhoods disproportionately affected. In Los Angeles, for example, one-third of all Black and Latino neighborhoods were pharmacy deserts, particularly concentrated in South Central LA neighborhoods.

For PLWH, this means not just longer travel times for medication but reduced access to HIV prevention resources and testing services. Pharmacies serve as crucial health access points—they provide HIV prevention tools like PrEP, conduct HIV testing, and offer medication counseling essential for treatment adherence. When pharmacies close or never open in certain neighborhoods, these services disappear too.

Medicare Part D and Medicaid plans often exclude independent pharmacies serving these communities, forcing PLWH to travel even farther for care. These policies function as a form of structural racism that requires historically marginalized populations to overcome additional barriers to access life-saving medications.

Provider Network Inadequacy

Healthcare provider shortages plague formerly redlined areas. Current federal network adequacy standards fail to ensure sufficient HIV care providers in these communities. Provider directories frequently overstate physician availability, and narrow insurance networks often include less than one-fourth of available providers.

Studies show that adults with Medicaid or Marketplace coverage are more likely than those with Medicare or employer-sponsored insurance to report network problems. This is especially concerning as approximately 40% of people living with HIV (PLWH) rely on Medicaid for their healthcare coverage. For PLWH, this translates to longer wait times, fewer options for culturally competent care, and reduced provider continuity—all factors that influence treatment adherence and viral suppression rates.

Time/distance standards for network adequacy ignore the reality that residents often rely on limited public transportation, making even "acceptable" distances functionally unreachable. A mile can feel like thirty when bus service is limited, transfers are required, or service ends before evening clinic hours conclude.

Hospital Consolidation

The acceleration of hospital consolidation has further eroded healthcare infrastructure in vulnerable communities. When acquiring systems take over local hospitals, they frequently close specialized services, forcing patients to travel further for care.

"The unfortunate reality is that more than 25 years of market-driven health facility consolidation has really left too many communities across the U.S. without timely access to needed care," experts note. This especially impacts residents of redlined neighborhoods, who often must navigate complex transportation systems to reach consolidated healthcare facilities.

Research shows hospitals without nearby competitors charge prices 12.5% higher than those in competitive markets—a financial burden that falls heavily on communities already struggling with economic disadvantage. As of 2017, 19% of markets—representing 11.2 million U.S. residents—were served by only one hospital system, creating healthcare monopolies that exacerbate access disparities.

Political Context: New Threats to Health Equity Research

Political attacks on health equity initiatives now compound these structural barriers. Recent executive orders targeting Diversity, Equity, and Inclusion (DEI) programs across federal agencies threaten vital HIV research and services.

The U.S Department of Health and Human Services (HHS) faces proposed budget cuts from $121 billion to $80 billion in discretionary funding, cutting precisely the prevention-focused health initiatives designed to address disparities. Healthcare researchers report increasing censorship pressures around health disparity research, particularly when using terminology associated with equity.

One cancer researcher noted the chilling effect: "We aren't sure what we can say in our grants. I very freely — before — wrote about disparities and equity in my grants." This uncertainty threatens the very research needed to understand and address HIV treatment delays in historically redlined communities.

Federal agencies have removed HIV-related content from websites, especially materials serving transgender populations. Reports indicate hundreds of HIV-related web pages were removed following executive orders targeting "gender ideology" and "DEI." When pages were restored, they often lacked reference to transgender people, creating significant gaps in data and care recommendations for key populations.

The threat extends to global HIV prevention efforts, with pauses on foreign aid affecting PEPFAR implementation and leaving vital medication and services in limbo. These disruptions threaten to reverse hard-won progress in controlling the HIV epidemic both domestically and globally.

From Analysis to Action

Understanding redlining's impact on HIV treatment access demands more than recognition—it requires targeted policy responses:

1. Strengthen pharmacy access in underserved areas by incentivizing pharmacy establishment and requiring Medicaid and Medicare Part D plans to include independent pharmacies serving marginalized communities. State pharmacy boards should consider pharmacy access when reviewing new applications and closures.

2. Reform PBM practices to eliminate patient steering by prohibiting PBM-owned specialty pharmacies from exclusively dispensing HIV medications. Research shows that patient steering to mail-order or specific chain pharmacies disrupts established care relationships and reduces medication adherence, particularly affecting PLWH in historically redlined areas who rely on community pharmacies for wrap-around services.

3. Reform network adequacy standards to ensure sufficient culturally-competent providers in historically redlined neighborhoods. Standards must account for transportation realities and penalize narrow networks that exclude critical HIV care providers. Secret shopper surveys should validate actual appointment availability beyond paper compliance.

4. Mandate PBM transparency and fair reimbursement to prevent discriminatory practices forcing community pharmacies in redlined neighborhoods to close. State legislation should require PBMs to disclose all revenue streams, prohibit retroactive fee clawbacks, and establish minimum reimbursement rates based on acquisition cost plus a fair dispensing fee.

5. Enhance antitrust enforcement to prevent further hospital consolidation, reducing access points in vulnerable communities. When mergers occur, mandate maintenance of essential services in historically underserved areas and require community benefits agreements that address historical inequities.

6. Protect and expand community-based HIV programs that provide testing, prevention education, and linkage to care services directly within affected neighborhoods. This includes mobile testing units, community health worker programs, and faith-based outreach initiatives.

7. Prioritize long-acting injectable antiretrovirals as a solution for areas with limited pharmacy access, reducing adherence challenges for people facing transportation barriers. Delivery models should include provision through mobile clinics and community-based organizations.

8. Defend health equity research funding against political attacks that threaten to undermine our understanding of how structural racism impacts health outcomes. Ensure that Institutional Review Boards (IRBs) and research institutions protect researchers examining health disparities.

Moving Forward

The link between historical redlining and HIV treatment delays reveals how structural inequities become embodied in health outcomes. This connection demands that policymakers, healthcare systems, and advocates recognize that achieving HIV treatment equity requires addressing the legacy of discriminatory housing policies.

As Dr. Batey notes, "If we can make services more accessible and get people virally suppressed sooner, the impact on the HIV epidemic can be quite significant." This requires defending existing health equity initiatives and developing new approaches that confront the structural barriers in historically redlined communities.

The one-month treatment delay identified in the Tulane study translates to real health consequences for PLWH and increased transmission risk within communities. Moving from awareness to action means investing in healthcare infrastructure that overcomes geography as destiny, creating systems where treatment access doesn't depend on neighborhood history.

In an era of political attacks on health equity initiatives, this research underscores why structural analysis matters. Without understanding how policies like redlining continue to shape healthcare access, we risk addressing symptoms while ignoring causes. Achieving HIV treatment equity demands both acknowledging historical injustice and implementing structural change—starting with the communities where barriers remain highest.

Leaked HHS Budget: Critical HIV Services Face Deep Cuts

A recently leaked budget document from the Department of Health and Human Services (HHS) has revealed the Trump Administration's plans for sweeping cuts that would fundamentally reshape federal health programs. The 64-page "pre-decisional" budget proposal, first reported by The Washington Post, outlines a severe reduction in HHS discretionary spending from $121 billion to approximately $80 billion—a 33% cut. This proposal provides the first comprehensive look at the administration's vision for restructuring the nation's health infrastructure, including the creation of a new Administration for a Healthy America (AHA) while eliminating or consolidating many established agencies that form the backbone of our public health system. The proposed changes would profoundly impact HIV/AIDS programs, viral hepatitis services, substance use disorder treatment, and access to care for vulnerable populations, potentially reversing decades of progress in public health.

The Scale of Proposed Cuts

The magnitude of cuts outlined in the leaked budget document would fundamentally transform the federal health infrastructure in ways not seen in decades. The National Institutes of Health (NIH), America's premier biomedical research institution, would see its budget slashed by 42%—from $47 billion to just $27 billion. This dramatic reduction would be accompanied by a plan to reorganize NIH's 27 institutes and centers into just eight, eliminating some entirely while consolidating others into broader entities with less specialized focus.

Similarly devastating, the Centers for Disease Control and Prevention (CDC) faces a proposed 44% budget reduction, from $9.2 billion to approximately $5.2 billion. The document indicates the CDC would be refocused primarily on "emerging and infectious disease surveillance, outbreak investigations, preparedness and response, and maintaining the Nation's public health infrastructure."

Even more concerning, several agencies would be eliminated entirely as independent entities, including the Health Resources and Services Administration (HRSA), the Substance Abuse and Mental Health Services Administration (SAMHSA), the Administration for Strategic Preparedness and Response (ASPR), and the Administration for Community Living (ACL). While some programs from these agencies would transfer to the proposed Administration for a Healthy America (AHA), many would be eliminated outright. As the leaked document itself states: "Many difficult decisions were necessary to reach the funding level provided in this passback."

Impact on HIV/AIDS Infrastructure

The proposed budget would effectively dismantle decades of federal HIV prevention and treatment infrastructure, threatening to reverse significant progress made toward ending the epidemic. Most alarming is the complete elimination of the CDC's Division of HIV Prevention (DHP), which has been the cornerstone of the nation's HIV prevention efforts. According to POZ, the division passes 89% of its funding directly to state and local HIV programs, with states like Alabama and Mississippi depending on it for up to 100% of their HIV prevention efforts.

The budget also eliminates the Ending the HIV Epidemic (EHE) initiative, which was launched during Trump's first administration and has produced a 21% reduction in new HIV transmissions within targeted jurisdictions. This initiative represented a rare bipartisan commitment to addressing the HIV epidemic through increased testing, prevention, and treatment resources.

The Ryan White HIV/AIDS Program, which provides essential care and treatment to over 550,000 people living with HIV who are uninsured or underinsured, would see significant cuts. The KFF analysis reveals that while core funding for grants to cities, states, and the AIDS Drug Assistance Program (ADAP) would be maintained, the budget eliminates support for dental services, AIDS Education and Training Centers, and demonstration programs.

Additionally, the Minority AIDS Initiative, which addresses the disproportionate impact of HIV on racial and ethnic minorities, would be eliminated entirely. This comes at a time when Black and Latino communities continue to face disproportionate HIV rates and could worsen existing health disparities.

"The scale of what is being lost is staggering," POZ reports. "According to recent analysis from amfAR, a 100% reduction in DHP funding will lead to 143,486 new HIV infections by 2030, 14,676 additional AIDS related deaths, and $60.3 billion in additional lifetime health care costs."

The proposal would move remaining HIV/AIDS programs under the new Administration for a Healthy America with reduced funding and an unclear structure, raising serious questions about program coordination and effectiveness going forward.

Viral Hepatitis, STIs, and Related Programs

The leaked budget proposal takes aim at viral hepatitis, sexually transmitted infections (STIs), and tuberculosis programs by consolidating their funding into a single, smaller grant program. According to POZ, "a proposal in the new budget to turn other CDC funding for viral hepatitis, STDs, and TB into block grants masks devastating funding losses as 'flexibility to address local needs.'" In reality, this consolidation would reduce overall funding by approximately $500 million, severely limiting the capacity to prevent and respond to outbreaks of these conditions.

Particularly concerning is the elimination of CDC's Global Health Center and the agency's critical STD laboratory, which MedPage Today confirms was shuttered during the recent mass layoffs. These cuts would dismantle essential testing infrastructure at a time when sexually transmitted infections are at record highs nationwide. The consolidation approach significantly weakens the specialized responses needed for these distinct but interconnected public health challenges, potentially allowing localized outbreaks to develop into broader public health crises without the targeted interventions currently in place.

Mental Health and Substance Use Disorder Services

The proposed budget calls for the complete elimination of the Substance Abuse and Mental Health Services Administration (SAMHSA), the federal agency dedicated to addressing mental health and substance use conditions. The impact of this elimination would be compounded by severe cuts to services: Mental Health Services would see a 25% reduction, Substance Use Treatment funding would drop by approximately 13%, and most alarmingly, Substance Use Prevention would be nearly eliminated with a staggering 92% cut.

The proposal would eliminate 17 mental health programs and 23 substance use prevention and treatment programs. Harm reduction services, which are critical in preventing overdose deaths and the transmission of infectious diseases such as hepatitis C virus (HCV), are particularly targeted for cuts. The proposed budget would also end the Certified Community Behavioral Health Clinic program, which provides 24-hour crisis services regardless of patients' ability to pay.

As STAT News reports, "We continue to face a mental health and addictions crisis, and the need for effective federal leadership is more important than ever." These cuts come at a time when more than one in four people will experience a mental health or substance use problem, and over 209,000 Americans die annually from alcohol, suicide, and drug overdoses.

Rural Health and Access to Care

Rural communities would bear a disproportionate burden from the proposed budget cuts through the elimination of numerous programs specifically designed to support rural healthcare infrastructure. As detailed in the leaked document, the budget would eliminate State Offices of Rural Health, which coordinate statewide efforts to improve healthcare delivery in rural areas. The Washington Post reports that rural hospital flexibility grants, rural residency development programs, and at-risk rural hospitals program grants would all face elimination or significant cuts.

Additionally, critical telehealth funding would be eliminated at a time when remote healthcare services have become essential lifelines for rural populations. These programs have historically enjoyed strong bipartisan support due to their critical role in maintaining healthcare access for the approximately 60 million Americans living in rural areas.

Alan Morgan, CEO of the National Rural Health Association said, "Those are essential to ensuring access to care for rural Americans and critical to keeping rural hospitals open. If that would come to fruition it would be absolute shocking news, because these programs have had such bipartisan support."

The Advisory Board notes that these cuts would exacerbate the already fragile state of rural healthcare, where over 150 rural hospitals have closed since 2010, leaving many communities without access to emergency and essential medical services.

340B Program and Healthcare Costs

Amid the sweeping cuts to safety-net programs, the leaked budget also proposes significant changes to the 340B Drug Pricing Program, which provides discounted medications to hospitals and clinics serving vulnerable populations. HFES reports that the administration is "seeking new authority to regulate 'all aspects of the 340B Program'" and would require covered entities to report on their use of 340B savings.

According to Health Exec, the proposal would require facilities to "charge no more than the actual cost of acquiring and dispensing drugs to low-income patients." While greater transparency might be beneficial, these changes—combined with cuts to other safety-net programs—could restrict access to affordable medications for people living with HIV, hepatitis, and other chronic conditions who rely on safety-net providers participating in the 340B program.

Conclusion

Unlike during Trump's first term when Congress often rejected deep cuts to health agencies, the current political landscape offers much less hope for meaningful congressional pushback. Under the GOP-controlled Congress, recent reports show Republicans largely falling in line behind Trump's initiatives, with Reuters reporting that the president is "testing the U.S. Constitution's system of checks and balances" while congressional Republicans demonstrate "staunch support." This legislative acquiescence has extended to health policy, with little effective opposition to the administration's sweeping restructuring of federal health agencies.

Further complicating advocacy efforts, HHS Secretary Robert F. Kennedy Jr. has eliminated a key avenue for public input by rescinding a 54-year-old policy that required public comment periods for rules on grants, benefits, and other health programs. This change, which came despite Kennedy's promises of "radical transparency," allows HHS to implement major policy changes without seeking feedback from affected communities, healthcare providers, or advocacy organizations.

In this environment, traditional advocacy approaches must evolve. In the absence of congressional intervention, our energy may be better spent:

1. Forming coalitions between patient groups, healthcare providers, private business, and public health organizations to amplify impact

2. Considering support for legal challenges to health policy changes implemented without adequate review

3. Carefully documenting and publicizing the real-world impacts of cuts to HIV services and other critical programs

4. Engaging with state officials who may have flexibility in implementing federal changes

5. Making use of remaining public comment opportunities when available, with a focus on evidence-based arguments

The proposed dismantling of federal HIV infrastructure represents an existential threat to decades of progress. While the political headwinds are strong, our collective advocacy efforts remain essential to protecting the health services that millions of Americans depend on.

System Failure: Inside the Collapse of HIV Data Protections

The privacy frameworks that protect people living with HIV—built over decades through advocacy, legislation, and the lived consequences of stigma and surveillance—are now on the brink of collapse. Recent reporting from WIRED reveals that "much of the IT and cybersecurity infrastructure underpinning the nation’s health system is in danger of a possible collapse" following deep staffing cuts at the U.S. Department of Health and Human Services (HHS). Agency insiders warn that "within the next couple of weeks, everything regarding IT and cyber at the department will start to reach a point of no return operationally."

These reductions—orchestrated under the banner of "efficiency"—have eliminated the technical expertise necessary to maintain the very systems designed to protect patient information while enabling effective public health response. What took decades of careful negotiation to build could unravel in weeks.

A History of Mistrust and What It Built

In response to early AIDS panic and political scapegoating, HIV reporting systems were designed to protect privacy while still enabling public health surveillance. States initially resisted name-based reporting, opting instead for coded identifiers. These systems directly resulted from community resistance to the idea that a centralized government entity would hold a list of PLWH. By the late 1990s, the Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration (HRSA) had settled into a delicate dance: collect enough data to direct resources without breaking trust with the communities most impacted.

The Ryan White HIV/AIDS Program (RWHAP), created in 1990, is a reflection of this balance. Providers are required to report client-level data annually through the Ryan White Services Report (RSR), but it must be de-identified. Each grantee—whether a city, state, clinic, or community-based organization—must report separately, even if they serve the same client. This redundancy is intentional. It's how we avoid co-mingling funds and how we ensure that data is not aggregated in a way that risks patient re-identification. It’s messy, yes. But it’s designed to protect people, not just count them.

Why It’s So Complicated

At a structural level, RWHAP is segregated by design. Part A grantees are typically cities, Part B is for states, Part C goes to clinics, and Part D supports programs for women, infants, children, and youth. Each grantee and subgrantee reports separately. A person receiving services from a city-funded housing program and a clinic-funded medical program will appear in two different reports. They’ll be encrypted, anonymized, and counted twice—because each program needs its own audit trail. This is not a flaw. It’s a firewall.

It’s also one of the biggest complaints from providers. Clinics and case managers spend untold hours cleaning and submitting the same data to multiple entities for different grants every year. State agencies complain about the burden. But buried underneath the frustration is the reality: these walls are what keep private information from being aggregated, shared, and potentially exposed (or worse, used to target).

Molecular Surveillance and the Reemergence of Privacy Concerns

Parallel to the RSR reporting, the CDC continues to manage HIV surveillance through diagnostic reports, lab data, and increasingly, molecular surveillance—using genomic data from viral samples to track clusters and potential outbreaks. These systems operate independently from care-based reporting systems like the RSR. They’re not supposed to overlap. That’s on purpose.

Molecular surveillance is a powerful tool. It can detect transmission networks, identify gaps in care, and help allocate resources. But it also raises serious privacy concerns. People have no ability to opt out of having their viral sequence data analyzed. Community advocates have raised alarms about how this data could be misused—especially in states with HIV criminalization laws or where public health trust is already low.

When properly separated from care systems, surveillance data can inform public health strategy without endangering patient privacy. But the more these systems are tampered with, neglected, or mismanaged, the greater the risk of privacy breaches and data misuse.

The DOGE Playbook: Gutting Public Health from Within

None of this works without infrastructure. And right now, that infrastructure is being hollowed out.

On April 1, the Department of Health and Human Services (HHS) laid off roughly 10,000 employees—about 25% of its workforce. That includes entire IT teams, cybersecurity experts, and staff responsible for maintaining the systems that house Ryan White and surveillance data. As WIRED reported, these cuts have left HHS systems teetering on the edge of collapse.

The layoffs were orchestrated by the Department of Government Efficiency (DOGE), a Musk-backed initiative with a mandate to slash spending and "modernize" systems. In reality, DOGE operatives have cut critical personnel and attempted to rebuild complex legacy systems—like Social Security's COBOL codebase—without the necessary expertise. As NPR reported, DOGE staff have also sought sweeping access to sensitive federal data, raising serious concerns about the security and ethical use of health information.

A retired Social Security Administration (SSA) official warned that in such a chaotic environment, "others could take pictures of the data, transfer it… and even feed it into AI programs." Given Musk's development of "Grok," concerns have been raised that government health data might be used to "supercharge" his AI without appropriate consent or oversight.

The value of this data—especially when aggregated across systems like HHS, SSA, Veterans Affairs, and the Internal Revenue Service—is enormous. On the black market, a single comprehensive medical record can command up to $1,000 depending on its depth and linkages to other data sets. For commercial AI training, the value is even greater—not in resale, but in the predictive and market power that comes from large, high-quality datasets. If private companies were paying for this kind of dataset, it would cost billions. Musk may be getting it for free—with no consent, no oversight, and no consequences.

Meanwhile, at USAID, funding portals were shut off. Grantees couldn’t access or draw down funds. Even after systems came back online, no one was there to process payments. The same scenario is now playing out at HHS. Grantees have reported delays, missed communications, and uncertainty about reporting requirements—because the people who used to run the systems have been fired.

What's at Stake: Beyond Data Points

The crisis we're witnessing isn't merely technical—it threatens the foundation of HIV services in America. When data systems fail, grants cannot be properly administered. When grants are disrupted, services are compromised. And when privacy protections collapse, people living with HIV may avoid care rather than risk unwanted disclosure of their status.

We've been here before. In the early days of the epidemic, mistrust of government systems drove people away from testing and treatment. The privacy frameworks built into today's reporting systems were designed specifically to overcome that mistrust, enabling effective public health response while respecting human dignity.

A Call for Immediate Action

To address this growing crisis, we need action at multiple levels:

1. Congress must exercise oversight over DOGE's activities by requiring transparent reporting on HHS staffing changes and their operational impacts, and by establishing strict limits on data access and audit trails to ensure administrative accountability.

2. HHS must rapidly rehire technical expertise with the institutional knowledge needed to maintain these complex systems before contracts expire and systems fail.

3. Advocacy organizations should demand clear guardrails on any use of healthcare data, particularly regarding AI applications, including explicit prohibitions on repurposing data collected for public health for commercial training without consent or compensation.

4. HRSA must immediately address the continuity of the RSR and other reporting systems to ensure grant requirements don't become impossible to meet due to system failures.

But let’s be clear: none of this is a call to keep broken systems frozen in time. Public health data infrastructure can—and should—be modernized. There is real opportunity to streamline reporting, reduce administrative burden, and build tools that serve patients more effectively. But modernization must be done carefully, collaboratively, and with privacy at the center—not with a chainsaw in one hand and a Silicon Valley slogan in the other.

The “move fast and break things” ethos may work for social media startups, but it has no place in systems that safeguard the lives and identities of people living with HIV. What we’re witnessing is not innovation—it’s ideological demolition. The goal isn’t better care or stronger systems. It’s control, profit, and a reckless dismantling of public trust.

The myth that federal IT systems are merely bloated bureaucracies in need of disruption ignores their critical role in protecting sensitive information. Our public health data infrastructure has been built layer by layer, through hard-fought battles over privacy, accountability, and service delivery. Dismantling these systems doesn’t represent modernization—it threatens to erase decades of progress in building frameworks that enable effective care while respecting the rights of people living with HIV.

The privacy architectures designed in response to the early AIDS crisis weren’t just policy innovations—they were survival mechanisms for communities under threat. We cannot afford to let them collapse through neglect, arrogance, or privatized pillaging. The stakes—for millions of Americans receiving care through these programs—couldn't be higher.

Mixed Signals: Trump's Drug Policy Undermines Its Own Goals

Last week, STAT News obtained the Trump administration's new drug policy statement, revealing a contradictory approach to the addiction crisis. The three-page "Statement of Drug Policy Priorities" combines harsh criminal penalties with support for addiction treatment, medication-based approaches, and even fentanyl test strips — harm reduction tools actively opposed during Trump's first term.

While pledging the "harshest available penalties" for those selling drugs causing overdose deaths, it also advocates increasing naloxone availability and supporting medications for opioid use disorder. This policy emerges as overdose deaths have begun declining under the Biden administration's public health approach, with fatal overdoses dropping 14.5% over the last year, though still claiming approximately 96,000 American lives annually.

The policy's implementation faces a significant obstacle: days before its release, the administration began massive layoffs across health agencies responsible for addiction response and data collection.

Understanding the New Policy Document

The Trump Administration's drug policy document sets out six key priorities: reducing overdose fatalities, securing the global drug supply chain, stopping drug flow across borders, preventing drug use before it starts, providing treatment leading to long-term recovery, and using data to inform strategy.

While the previous Trump administration actively opposed fentanyl test strips, with one official even writing a blog post cautioning against the "temptation to develop seemingly quick solutions," this new document specifically states that the administration will "encourage state and local jurisdictions to increase the availability of drug test strips and naloxone to mitigate the impact of deadly drugs on communities across the country."

The document also uses terminology like "medications for opioid use disorder" rather than "medication-assisted treatment," reflecting evolution in the addiction medicine field's preferred language. However, these statements appear alongside more forceful enforcement-focused language about bringing distributors to "justice" and pursuing "harshest available penalties" against those who sell fentanyl resulting in overdose deaths.

This policy juxtaposition reflects an ongoing tension within U.S. drug policy between public health and criminal justice approaches—a tension that has persisted through multiple administrations regardless of political party.

RFK Jr.'s Privileged Recovery Shapes Policy

Health Secretary Robert F. Kennedy Jr.'s substance use history significantly influences his policy perspective. Kennedy has been open about his 14-year struggle with heroin beginning at age 15, crediting his recovery to faith and 12-step programs — approaches now informing his recommendations.

Kennedy's advocacy for "wellness farms" where "American kids can reconnect to America's soil" reflects his personal journey but ignores that his wealth and status provided treatment access unavailable to most Americans facing addiction. Despite his history, Kennedy has shown skepticism toward evidence-based medical treatments, suggesting government should provide "a bottom" for people who use drugs — essentially favoring coerced treatment over voluntary healthcare pathways.

Enforcement vs. Treatment: Unbalanced Priorities

The administration heavily emphasizes enforcement over treatment. During the campaign, Trump promised to crack down on fentanyl smugglers, secure the border, and execute drug dealers. This mentality appears in the policy document's focus on "harshest available penalties" and "disrupting the supply chain."

Border czar Tom Homan has even threatened military action against Mexican cartels, stating the administration will use "the full might of the United States special operations to take them out." Drug policy researcher Jonathan Caulkins called such military action "the worst idea anyone has ever had," noting illegal supply chains easily rebuild after enforcement actions.

Meanwhile, evidence suggests the Biden Administration's public health approach contributed to the recent 14.5% drop in overdose deaths through expanded access to medications like buprenorphine and naloxone—interventions with stronger evidence of effectiveness than enforcement-only approaches.

Workforce Cuts Undermine Data Commitment

The administration's commitment to data-driven policy faces immediate challenges. On April 1, the U.S. Department of Health and Human Services (HHS) began layoffs cutting approximately 10,000 positions—25% of the department's workforce. Among those laid off was the entire team responsible for the National Survey on Drug Use and Health, a 50-year-old survey providing crucial data on substance use patterns.

Senior leaders at agencies critical to addiction response were let go or reassigned, including Substance Abuse and Mental Health Services Administration (SAMHSA)'s Office of Recovery staff, which had developed strategies to reduce overdose deaths. This dismantling of expertise contradicts the policy's stated goals of prioritizing "continuous collection and analysis of accurate, timely, and relevant data."

Medicaid Cuts Threaten Treatment Access

The most glaring contradiction is the proposed $880 billion cut to Medicaid over the next decade. Medicaid is the largest payer for addiction treatment in America, covering approximately 35% of all people treated for opioid use disorder, with over 1.82 million people receiving treatment through the program.

In New Hampshire, 82% of Medicaid enrollees with opioid use disorder receive medication-assisted treatment. Studies show Medicaid enrollees receiving buprenorphine are more likely to become employed, have shorter job searches, and earn more than those not receiving treatment.

The proposed cuts would severely undermine treatment access. Data from the Kaiser Family Foundation shows spending for Medicaid enrollees with substance use disorders is twice as high as for those without—about $1,200 versus $550 per month—making them particularly vulnerable to coverage reductions.

Leadership Without Expertise

The nomination of Sara Carter to lead the Office of National Drug Control Policy (ONDCP) further illustrates the disconnect between stated priorities and implementation. Carter, a Fox News contributor with no background in drug policy, public health, or government, would coordinate the nation's response to substance use disorders.

This contrasts sharply with her predecessor, Dr. Rahul Gupta, a physician and former health commissioner with extensive public health experience. Project 2025, a policy blueprint embraced by the administration, advocates for reducing ONDCP's influence by transferring its grant programs to other departments.

Harm Reduction Under Threat

Despite its surprising shift to support fentanyl test strips—tools that can detect the presence of fentanyl in other substances and were explicitly opposed by the previous Trump Administration—the policy document notably avoids using the term "harm reduction." This telling omission reflects ongoing ideological resistance to comprehensive harm reduction strategies.

The document's limited endorsement of test strips and naloxone creates uncertainty for organizations like OnPoint NYC, which has reversed over 1,700 overdoses since 2021 through more comprehensive supervised consumption services. The first Trump administration actively opposed such services, with the Department of Justice suing to prevent a site from opening in Philadelphia.

The current policy's silence on supervised consumption, coupled with Kennedy's "tough love" approach, suggests harm reduction organizations may face increased legal challenges despite clear evidence that such services save lives without increasing drug use or crime in surrounding communities. This selective adoption of certain harm reduction tools while potentially undermining broader evidence-based approaches highlights the administration's fundamentally punitive orientation to substance use.

Same War, Different Rhetoric

The Trump administration's drug policy represents a mixed approach, pairing traditional "war on drugs" enforcement strategies with acknowledgment of some evidence-based interventions. Its support for fentanyl test strips and recognition of medications for opioid use disorder marks a meaningful evolution from the previous administration's stance, potentially saving lives if implemented properly.

However, this progress exists alongside troubling contradictions: promising data-driven strategies while firing the researchers who collect data; advocating for treatment while proposing deep Medicaid cuts that would devastate access; and endorsing overdose prevention while appointing leadership without relevant expertise. This disconnect between words and implementation capacity raises serious concerns.

Since 1971, America has spent well over a trillion dollars on enforcement-first drug policies that have filled prisons without reducing substance use disorders. The results speak for themselves: overdose deaths have continued to climb for decades, with entrenched racial disparities in enforcement and inadequate treatment resources in many communities.

The inclusion of fentanyl test strips and medication support represents a positive step, but cannot overcome fundamental structural barriers created by workforce reductions and funding cuts. After decades of evidence showing what works—and what doesn't—in addressing substance use disorders, we need policies that match rhetoric with resources. Only time will tell whether this administration can reconcile its contradictory approaches to deliver meaningful improvements in America's response to addiction.

Are Federal Spending Cuts Endangering America's Most Vulnerable

CANN continues to monitor the restructuring of federal health agencies and the impacts of funding cuts on public health programs nationwide. This article is part of our developing coverage.

Two infants in Louisiana recently died from whooping cough—the first such deaths in the state since 2018. This tragedy comes amid a twelve-fold increase in whooping cough cases, from just 11 in 2023 to 149 in 2024, with 110 already recorded in the first three months of 2025 alone. These deaths occurred shortly after a February 13th decision by the Louisiana Surgeon General to end all vaccine promotion and outreach events statewide—the same day Robert F. Kennedy Jr. was confirmed to lead the U.S. Department of Health and Human Services (HHS).

These preventable deaths are the direct consequence of an intensifying assault on America's public health infrastructure, as the Trump Administration executes an $11.4 billion clawback of COVID relief funds from state health departments while simultaneously gutting federal health agencies through mass layoffs. The consequences of these dangerous, ideologically-driven policies are unfolding across the country and, as public health experts predicted, people are dying.

A System Already at the Breaking Point

Before these cuts, state and local health departments were already operating in a perpetual state of crisis. Years of chronic underfunding and staffing shortages had left America's public health system dangerously fragile and ill-equipped to handle emerging health threats.

In Utah, 70-90% of the state's public health funding comes from the federal government. Local health departments, particularly in rural and underserved areas, often function with minimal staff and resources, stretching their capacity to its limits to fulfill basic functions.

"This is going to be a major dent in our ability to be prepared for whatever new threat might come," warned Connecticut Health Commissioner Manisha Juthani. Philip Huang, Dallas County Health director, pointed out that even modest cuts can have outsized impacts on smaller departments: "It may not be in the millions, but these are really small health departments that have very few staff, very little capacity. And then if you hit those, then it starts to really impact their ability to respond."

The $11.4 Billion Clawback: A Devastating Blow

On March 25, 2025, the Centers for Disease Control and Prevention (CDC) announced it was pulling back $11.4 billion in COVID-19 funding previously allocated to state and local health departments across the nation. The announcement came without warning, leaving health officials scrambling to assess impacts on critical programs and staff.

The administration's justification was blunt and misleading: "The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago," said HHS Director of Communications Andrew Nixon in a statement to NBC News. This characterization fundamentally misrepresents how these funds were being used.

While the grants were initially authorized for pandemic response, they had evolved to support core public health functions: tracking infectious disease outbreaks, monitoring wastewater for early detection of disease spread, supporting community health workers in underserved areas, addressing health disparities, and maintaining vaccination programs for multiple preventable diseases.

The financial impact on states is severe: Texas faces the loss of $877 million, Florida $482 million, and North Carolina $100 million in cuts affecting immunization efforts and infectious disease monitoring. In Kentucky, $34 million in already-committed funds are now inaccessible, despite previous federal guarantees those funds would be available through March 2026.

Minnesota's Department of Health has issued layoff notices to 170 workers and rescinded offers to 20 new hires in response to losing $220 million in federal funding. This has resulted in slower responses to infectious disease outbreaks with fewer lab technicians and public health investigators.

The HHS Bloodbath: Dismantling Decades of Expertise

On April 1, 2025, HHS began executing the largest mass layoff in its history—eliminating 20,000 positions (10,000 through direct layoffs and another 10,000 through early retirement and voluntary separation offers).

The manner of these dismissals was particularly callous. According to the Associated Press, "Some staffers began getting termination notices in their work inboxes at 5 a.m., while others found out their jobs had been eliminated after standing in long lines outside offices to see if their badges still worked." Some workers who received layoff notices were directed to contact an EEO official who had died months earlier.

As the layoffs commenced, HHS Secretary Robert F. Kennedy Jr. tweeted triumphantly, "The revolution begins today!" When confronted by a fired HHS employee asking about the impact on people with disabilities, Senator Jim Banks responded, "You probably deserved it," then called the worker "a clown" as elevator doors closed.

Critical CDC and HIV Programs Decimated

MedPage Today reports that the hardest-hit areas of the CDC included centers focused on injuries, global health, chronic disease prevention, and infectious diseases including HIV, hepatitis, STIs, and tuberculosis. Directors of at least three major CDC centers were reassigned or placed on administrative leave.

The cuts strategically targeted offices serving vulnerable populations. The Administration for Community Living, which coordinates programs like Meals on Wheels, saw approximately 40% of its staff eliminated. The Office of Minority Health was largely dismantled, and entire offices were eliminated, including the Office of Science and Data Policy and Freedom of Information Act offices at the CDC.

The HIV+Hepatitis Policy Institute's Carl Schmid warned that the elimination of HHS's Office of Infectious Disease and HIV Policy would have lasting consequences:

"The expertise of the staff, along with their decades of leadership, has now been destroyed and cannot be replaced. We will feel the impacts of these decisions for years to come and it will certainly, sadly, translate into an increase in new HIV infections and higher medical costs."

These cuts follow the forced resignation of Dr. Peter Marks, the FDA's top vaccine safety official, who had resisted Kennedy's vaccine misinformation. In his departure letter, Marks wrote that "truth and transparency are not desired by the secretary, but rather he wishes subservient confirmation of his misinformation and lies."

Louisiana: Where Anti-Vaccine Policy Has Already Claimed Lives

Louisiana offers a foreboding preview of what happens when ideology trumps evidence-based public health practice. On February 13, 2025, Louisiana Surgeon General Dr. Ralph Abraham issued a directive ending all vaccine promotion and outreach events by the state health department.

Jennifer Herricks of Louisiana Families for Vaccines warned: "And the consequences of lower vaccination rates? More illness. More hospitalizations. More deaths." Tragically, her prediction has already come true for two Louisiana families who lost their babies to a vaccine preventable disease.

The memo came despite Louisiana experiencing its worst whooping cough outbreak in over a decade. Manning Family Children's Hospital in New Orleans has been admitting 1-2 children weekly for whooping cough, with cases statewide skyrocketing from 11 in 2023 to 149 in 2024.

By February 20—less than a week after the vaccine promotion ban—news outlets reported the first infant death from whooping cough. A second soon followed. Yet the health department did not officially confirm these deaths until March 28, more than a month later. In that belated announcement, Abraham did acknowledge that "vaccines are the best way to protect against infections, especially for babies," but this came after the vaccine preventable deaths had already occurred.

Vaccine Science Under Attack

During an American Public Health Association panel on vaccine science, Dr. Paul Offit of the Children's Hospital of Philadelphia compared the dismantling of public health agencies to an invasion "by a foreign nation" whose interest "is to destroy public health agencies." He emphasized that the HHS cuts will cause a significant loss of institutional knowledge vital for future public health emergencies.

Offit noted that NIH-funded research on mRNA technology "probably saved roughly 3 million lives" during the COVID pandemic. The dismantling of vaccine expertise comes amid a resurgence of vaccine-preventable diseases, with two deaths already reported in the measles outbreak affecting several states.

Public Health Leaders Unite in Opposition

Over 100 of the nation's most respected public health leaders—including former HHS Secretaries, CDC Directors, and state health officials—have issued an open letter urging Congress to halt the Trump administration's dismantling of public health infrastructure.

The letter, organized by For Our Health, warns: "This is a moment of profound danger for public health. The dismantling of CDC is not just an internal agency matter—it will leave states, communities and American families without the support they need to protect themselves from disease, misinformation and chronic illness."

Broader Impacts: New Threats for PLWH and Vulnerable Populations

For people living with HIV and other immunocompromised conditions, the dismantling of public health infrastructure creates particularly dangerous vulnerabilities. The elimination of the HHS Office of Infectious Disease and HIV Policy removes coordination for HIV programs across federal agencies.

With the Health Resources and Services Administration (HRSA) facing staffing reductions, coordination of HIV prevention and treatment programs could be compromised. These structural changes risk undermining the health infrastructure that people living with HIV depend on for essential care.

The closure of wastewater surveillance programs eliminates a key early warning system for HIV cluster detection, while the decimation of health equity programs removes vital supports for marginalized communities disproportionately affected by HIV.

Breaking: Judge Blocks Funding Cuts as HHS Backtracks

In a significant development, U.S. District Judge Mary McElroy announced on April 3 she would issue a temporary restraining order blocking the Trump administration's $11.4 billion funding cuts to state health departments. During the hearing, McElroy stated that the 23 states and District of Columbia that filed the lawsuit "make a case, a strong case, for the fact that they will succeed on the merits."

This judicial intervention represents a critical, if temporary, reprieve for state health departments already reeling from layoffs and program cancellations. New York Attorney General Letitia James responded to the ruling by tweeting: "We're going to continue our lawsuit and fight to ensure states can provide the medical services Americans need."

Simultaneously, Secretary Kennedy has begun backtracking on the sweeping cuts, claiming it was "always the plan" to reinstate certain employees and programs after terminating them. Kennedy acknowledged that "personnel that should not have been cut were cut" and said some would be reinstated, including a CDC program that monitors blood lead levels in children.

This claim contradicts the chaotic, across-the-board nature of the cuts that eliminated entire divisions and critical public health functions. Kennedy's assertion that "we're going to do 80% cuts, but 20% of those are going to have to be reinstalled, because we'll make mistakes" reveals a reckless approach to public health administration where critical programs and expertise are eliminated first, with potential consequences evaluated only after damage is done.

These developments suggest mounting pressure against the administration's public health cuts is beginning to have an effect, reinforcing the importance of continued advocacy and legal challenges.

The Fight to Preserve Public Health: What Comes Next

The combined impact of the COVID funding clawback and HHS restructuring represents an unprecedented assault on America's public health infrastructure. Twenty-three state attorneys general have already filed legal challenges against the funding cuts, arguing they exceed executive authority and violate appropriations law.

Recent election results suggest the administration's approach to public health may be backfiring politically. In Wisconsin's Supreme Court race, liberal candidate Susan Crawford defeated her conservative opponent despite record spending by DOGE architect Elon Musk. Meanwhile, special elections in Florida districts that Trump won by 30 points saw Republican margins cut in half.

This political landscape creates an opening for effective advocacy. Congressional representatives, particularly those in vulnerable districts, may be increasingly receptive to constituent concerns about public health funding. The moment calls for coordinated action: contact your representatives to demand oversight hearings and funding restoration; document and report public health impacts in your community; and support organizations working to preserve essential health services.

The preventable deaths we're witnessing are the predictable consequence of policies that prioritize ideology over scientific evidence and public health. Our collective advocacy can make the difference between a temporary setback and lasting damage to our nation's public health infrastructure.

PDAB Chicanery: How Drug Affordability Boards Are Undermining Public Engagement

Prescription Drug Affordability Boards (PDABs) across the country are playing a dangerous game with public engagement—one where they keep changing the rules and moving the goalposts. From inadequate notice periods to last-minute document releases, these boards are creating barriers that echo troubling federal trends, effectively sidelining the very people who have the most at stake: patients.

These state-level games mirror concerning federal developments, most notably the rescinding of the Richardson Waiver by U.S. Department of Health & Human Services (HHS) Secretary Robert F. Kennedy, Jr. This action removed a 50-year precedent requiring public input on HHS rules—effectively telling patients and advocates their opinions aren't welcome at the policy table.

As these transparency rollbacks continue, people who rely on medications face increasing uncertainty about their access to life-sustaining treatments—while boards claim to represent their interests through processes that actively exclude them.

Maryland PDAB: How to Follow the Letter of the Law While Breaking Its Spirit

Maryland's Prescription Drug Affordability Board offers a master class in technical compliance that functionally blocks meaningful public participation. Their recent meeting preparation tactics exemplify how these boards can check procedural boxes while effectively sidelining patient voices.

On March 18, 2025, the Maryland PDAB posted a revised agenda for their upcoming March 24 meeting. This might seem unremarkable until you realize the public comment deadline was March 19—giving stakeholders exactly one day to review, analyze, and formulate responses to complex pharmaceutical policy documents. The revised agenda wasn't a minor update either. It contained material differences from the previous version, including a comprehensive cost review dossier for Farxiga, a medication critical for many people with diabetes and heart failure.

As CANN's letter to the board noted, "Posting the updated agenda with associated meeting materials the day before the deadline for comment is not a good faith effort in garnering public trust, nor does it display value in public input." The Maryland PDAB's approach creates a veneer of public engagement while practically guaranteeing that meaningful input will be minimal.

This pattern suggests the board views public comment as a procedural hurdle rather than a valuable source of insight. By technically fulfilling their obligation to post materials before the comment deadline (even if by mere hours), they've found a convenient loophole that undermines the very transparency standards that public notice requirements are designed to uphold.

The Maryland case isn't an anomaly. It's a symptom of a growing tendency to treat public engagement as an inconvenient formality rather than a crucial component of sound healthcare policy development.

The Federal Parallel: HHS and the Richardson Waiver

The state-level PDAB maneuvers don't exist in a vacuum. They mirror a troubling federal precedent set by HHS Secretary Robert F. Kennedy, Jr., who recently rescinded the Richardson Waiver—a decision that effectively slams the door on patient advocacy at the federal level.

The Richardson Waiver has a 50-year history. Established in 1971, it required HHS to subject matters relating to "public property, loans, grants, benefits, or contracts" to the American Procedures Act's notice and comment rulemaking guidelines. This waiver was created specifically to ensure public voices would be heard on matters that directly affect their health and well-being.

Now, that protection is gone. The new HHS rule claims the waiver "impose[s] costs on the Department and the public, are contrary to the efficient operation of the Department, and impede the Department's flexibility to adapt quickly to legal and policy mandates." This bureaucratic language translates to a simple message: we don't care what you think.

God forbid they remember who they work for.

And the impact is far-reaching. While Medicare remains protected under separate provisions of the Medicare Act, critical programs like Medicaid, SAMHSA, and the Administration for Children and Families now operate without mandated public comment periods. Legal experts note this could allow for swift implementation of controversial measures like Medicaid work requirements without going through normal rulemaking processes.

The timing is particularly ironic given the Office of Management and Budget's recent guidance letter emphasizing the importance of "broadening public participation and community engagement" and making it "easier for the American people to share their knowledge, needs, ideas, and lived experiences to improve how government works for and with them."

This federal retreat from transparency sets a dangerous tone that state-level boards appear eager to follow.

Other State PDAB Examples: Oregon and Colorado's Concerning Patterns

Maryland isn't alone in its questionable approach to public engagement. Oregon's PDAB recently decided to include Odefsey—an antiretroviral medication for people living with HIV—on its list for cost control exploration, contradicting previous discussions to protect these medications. While they claim they might reconsider based on affordability research, this flip-flop creates unnecessary anxiety for people who depend on these treatments.

Colorado's PDAB situation is particularly egregious. Since 2023, CANN has repeatedly requested that the board consult with the state health department about rebate impacts on public health infrastructure and patient affordability—concerns echoed by the former SDAP director and PDAB members themselves.

Yet Colorado PDAB staff have consistently avoided conducting a proper fiscal impact analysis, bluntly stating "We won't be doing that" when asked directly. This refusal persisted even as formal rulemaking began, which triggers statutory requirements for analyses under Colorado's Administrative Procedure Act.

The board has repeatedly postponed its first rulemaking hearing, effectively delaying compliance with transparency requirements. Meanwhile, the Joint Budget Committee has begun questioning the PDAB's financial accountability, receiving only partial responses about consultant costs and litigation expenses.

Most concerning is the disconnect between PDAB actions and demonstrated patient benefits. A 2024 analysis of Oregon's similar program showed states would need additional funds to maintain programs under an upper payment limit system—with no meaningful patient affordability improvements identified.

Patient Impact: Why This Matters

Behind the procedural games and policy maneuvers are real people whose lives hang in the balance. The Colorado PDAB's actions exemplify how these bureaucratic decisions create genuine fear and uncertainty for people with rare diseases and conditions requiring specialized medications.

Twelve-year-old Avery Kluck lives with Aicardi syndrome and faces life-threatening seizures that have been intensifying. Her doctors recommended Sabril, a powerful anticonvulsant costing up to $10,000 per month—a medication on Colorado's PDAB radar for potential price controls.

"We're to a point now where her seizures are getting more violent, and this is our last resort," explains Heather Kluck, Avery's mother. "And now I'm finding out she may not have access to it." The family faces an impossible choice between starting a medication that might become unavailable or watching their daughter suffer.

This uncertainty isn't theoretical. At least one pharmaceutical company has already threatened to pull drugs from Colorado if price caps are imposed. For medications like Sabril, which are dangerous to discontinue abruptly, such market exits could be catastrophic.

People living with cystic fibrosis also had to mobilize to prevent Colorado's PDAB from declaring Trikafta "unaffordable," with one parent describing the experience as "torturous for our family" and another stating: "It's an experiment, and it's really gross that they're doing it on people who are really sick."

The irony is painful: boards created to increase medication access may end up restricting it for those who need it most.

Conclusion

These boards, created under the guise of helping patients afford medications, are operating in ways that actively silence patient voices. From Maryland's last-minute document dumps to Colorado's refusal to conduct impact analyses and Oregon's policy reversals on critical medications, these boards are erecting barriers that exclude the very people who will bear the consequences of their decisions.

The problems run deeper than procedural failures. The fundamental approach of PDABs—attempting to control drug prices without adequately assessing impacts on patient access—risks creating catastrophic unintended consequences for people who depend on specialized medications. Avery Kluck and others living with rare conditions don't have the luxury of waiting while boards experiment with price controls that might make their life-saving treatments unavailable.

The pattern is clear: from the federal level with RFK Jr.'s dismantling of public comment protections to state PDABs playing administrative games, we're witnessing a coordinated retreat from meaningful public engagement in healthcare policy. This isn't just bad governance—it's dangerous for patients.

States should seriously reconsider whether PDABs serve any legitimate purpose beyond political theater. At minimum, stakeholders across the healthcare spectrum must demand that these boards either implement truly transparent, patient-centered processes or acknowledge they cannot fulfill their stated mission without causing harm to the very people they claim to help.

A Public Health Crisis in the Making

In recent years, the United States has made substantial progress in combating the HIV epidemic through increased access to treatment, prevention programs, and support services. These advancements have been largely driven by federal funding initiatives, such as the Ryan White HIV/AIDS Program (Ryan White), the Ending the HIV Epidemic (EHE) initiative, and the proper use of the 340B Drug Pricing Program. However, proposed cuts to HIV prevention funding at the federal level pose a significant threat to undoing decades of progress and could have devastating public health consequences.

On March 18th, the Wall Street Journal reported the Trump Administration’s plan to “reorganize” certain programs within the Center for Disease Control and Prevention (CDC). The reports of sources stated that the plan included existing HIV prevention programs and their allocated funding. Reports of the directive were to return to 2019 levels of funding, reduction of 10% of funding and workforce, and potentially move programs under HRSA while keeping surveillance at CDC. 

​The Trump Administration's proposed significant reductions in HIV prevention funding and workforce have profound implications for both domestic public health programs, mirroring concerns around cuts to USAID, affecting global public health. These cuts threaten to reverse decades of progress in combating the HIV epidemic, leading to increased infections, compromised healthcare systems, and heightened economic burdens.

HIV prevention programs support activities across other areas of infectious disease monitoring, prevention, and treatment, including STI, Viral Hepatitis, Tuberculosis, and Substance Use programs. Prevention programs further support treatment programs with testing, screening activities, and linkage to care upon reactive tests.

Federal HIV programs provide essential services to individuals living with or at risk for HIV, particularly those from marginalized communities who may lack access to private healthcare. Programs like Ryan White ensure access to life-saving antiretroviral therapy (ART), which not only improves individual health outcomes but, as we’ve learned in the past decade, also prevents HIV transmission when individuals remain undetectable. Ryan White programs are housed within the Health Resources and Services Administration (HRSA), which also handles other treatment delivery programs. Additionally, CDCl’s HIV prevention programs and PrEP initiatives have expanded awareness and increased access to the prevention toolbox that reduces new infections.

This serves as a move widely seen as counter to one of the Trump Administration’s most high-profile first-term priorities. The EHE initiative, launched in 2019, aims to reduce new infections by 90% by 2030. Achieving this ambitious target requires sustained and increased investment. In support of these efforts and to help vulnerable patients re-engage and sustain their care, in FY 2024, HRSA awarded EHE grantees approximately $147,000,000 to link people with HIV who are either newly diagnosed or are diagnosed but currently not in care to essential HIV care and treatment and support services, as well as to provide workforce training and technical assistance, leading to 35,724 new diagnoses in 2022. The design of these dollars recognizes the role of people already living with HIV as “prevention warriors” by providing resources to stop chains of transmission.

However, HRSA’s awards operate differently than those programs housed at and funded by the CDC. The Administration's proposal to eliminate some or all federal funding for domestic HIV prevention programs is particularly alarming. This move would dismantle the CDC’s HIV prevention division, effectively halting federally funded prevention efforts for communities where HIV transmission is high and seeking to serve the needs of people vulnerable to HIV acquisition, as opposed to those who have already been diagnosed. Such reductions could undo decades of progress in combating the epidemic.

CANN President & CEO Jen Laws argued: “Moving prevention programs to HRSA, dividing up surveillance and programmatic activities, is a non-starter. HRSA is already under water, by their own admission, in terms of capacity and reports by the Government Accountability Office has outlined necessary oversight of existing programs being less than optimal, thus showing this type of suggestion isn’t a serious one.” “I don't think anyone can disagree that certain efficiencies must be made - duplicative reporting requirements across multiple grants is absolutely a burden on our service providers. But I think folks who might see a HRSA shift as hopeful are being a bit…hopeful. Moving HIV prevention programs to HRSA likely means opening the door to grouping prevention and treatment programs together, without an expanded budget or workforce, and very truly risks a sector shift to prevention only and abandoning people already living with HIV altogether.”

Historically, reductions in prevention funding have led to decreased HIV testing rates and diminished awareness of prevention methods, including mother-to-child transmission prevention, later-stage diagnoses, and reduced linkage to care rate for people who have seroconverted by have not yet been diagnosed. This not only jeopardizes individual health but also facilitates unchecked transmissions of HIV within communities.

The CDC spends about $1 billion a year on domestic HIV prevention, most of it funneled to the states to help with local efforts. The goal of increasing PrEP coverage to 50% according to the CDC’s Monitoring National HIV Prevention Goals by using data from the National HIV Surveillance System (NHSS) had increased from 13.6% at the launch of EHE to 36% in 2022, and a total of 1,736,850 CDC-funded HIV tests were conducted in 2021.

The EHE initiative and CDC have provided much-needed resources to regions most impacted by the domestic HIV epidemic. In 2022, testing was provided to diagnose 19,822 in the disproportionately burdened South, along with the Northeast (5,080), Midwest (4,903), West (7,858), and U.S. territories and freely associated states (380). The CDC provided $495,904,554 in prevention awards in 2024 to state and county health departments and their partners. 

Threats of $700 million to $1 billion in HIV prevention funding being cut are not just a dollar amount; they have significant economic repercussions. This would impact state and city health departments, STI clinics, non-profit organizations that provide testing and treatment services, and thousands of individuals who have dedicated their lives and careers to ending this epidemic. These individuals would face the risk of job losses, health insurance coverage, and widespread devastation to the workforce. This move would also eliminate large swaths of 340B revenue sources - expanding the economic impact

Moreover, budget cuts have previously resulted in significant staffing reductions within local health departments. Notably, 43% of departments experiencing funding cuts reported decreases in HIV, sexually transmitted infections (STI), and viral hepatitis program staffing levels. Such workforce reductions hinder the capacity to deliver essential services, further exacerbating the public health crisis. ​

Without proper funding, many individuals will experience interruptions in care and prevention, leading to late diagnosis, drug resistance, opportunistic infections, and AIDS-related complications. The decline in accessible HIV care and prevention could result in higher mortality rates, disproportionately affecting the most vulnerable regions across the country.  In 2022, numbers and percentages of HIV-related deaths were as follows: Northeast—570 (13%), Midwest—430 (10%),  South—2,379 (56%), West—766 (18%), U.S. territories and freely associated states—98 (2%). 

The Trump Administration's reductions in HIV prevention funding and workforce pose significant threats to both domestic and global health. The potential increase in HIV infections, coupled with strained healthcare systems and escalating economic costs, underscores the critical need for sustained investment in HIV prevention and treatment programs.

Reducing this funding would put millions of Americans at risk, disproportionately affecting Black, Latino, LGBTQ+, and low-income communities, especially those across the South, who already face very real obstacles to healthcare. Every dollar invested in HIV prevention and treatment saves lives and reduces future healthcare costs. Treatment and prevention programs operate like a train on tracks, separate and distinct pieces that need one another to reach a destination - remove one of those pieces, and the goal is entirely unattainable. If we want to continue making progress, the Trump Administration must recognize that reducing funding now is a short-sighted decision that will result in lives lost and financial losses in the future. Federal HIV prevention funding and programs are more than just a budget line item—it is a lifeline for millions of people. Cutting it would set us back decades and put lives at risk.

HIV Long-Acting Injectables Face Policy Hurdles After CROI 2025

Amid the political turmoil and public health uncertainties of 2025, a remarkable scientific success story continues to unfold. The Conference on Retroviruses and Opportunistic Infections (CROI 2025) showcased significant advancements in HIV long-acting injectables for prevention and treatment—with new formulations requiring as few as one intervention per year. These latest innovations build on the promise of existing long-acting therapies while dramatically extending their duration and effectiveness.

These advancements represent more than scientific achievements; they're testaments to the HIV community's persistent demand for better options. After decades of daily pills, these innovations offer liberation from medication schedules, reduced visibility for those who face stigma, and new hope for those who struggle with adherence. The HIV community has always adapted and persevered, and these breakthroughs are the latest chapter in that ongoing story of resilience.

Yet, as we celebrate these scientific milestones, we face a familiar challenge: ensuring innovations translate into accessible care for all who need it. While researchers present promising data in conference halls, Republican-led attempts to slash Medicaid funding and legal challenges to preventive care coverage threaten to limit who benefits from these breakthroughs. It's a jarring disconnect between scientific progress and political reality that the HIV community knows all too well.

Still, if history has taught us anything, it's that the HIV community has never backed down from a fight for access. So we'll toast to the science, roll up our sleeves, and get to work on the policy—because breakthrough treatments mean little if they're out of reach for those who need them most.

Scientific Breakthroughs in HIV Prevention

The most notable announcement from CROI 2025 was Gilead's presentation of first clinical data for once-yearly lenacapavir formulations for HIV prevention. The Phase 1 study data showed that both intramuscular formulations maintained plasma concentrations well above protective thresholds for a full year, with median trough concentrations at Week 52 significantly higher than those observed with twice-yearly lenacapavir at Week 26.

This represents a substantial advance beyond current options like daily oral PrEP and bimonthly injectable cabotegravir, potentially reducing interventions to just once annually. The PURPOSE trials have already demonstrated the impressive efficacy of lenacapavir, with PURPOSE 1 showing 100% protection in women in South Africa and Uganda, and PURPOSE 2 finding a 96% lower acquisition rate compared to background incidence across diverse populations.

Advancements in Long-Acting HIV Treatment

Treatment options for people living with HIV are seeing similar progress. The combination of lenacapavir with broadly neutralizing antibodies (bNAbs) teropavimab and zinlirvimab maintained viral suppression in 96% of participants at Week 26, comparable to daily oral treatment. This regimen, which gained FDA Breakthrough Therapy Designation in January 2025, could offer a complete twice-yearly treatment option.

ViiV Healthcare's EMBRACE study of N6LS, administered every four months with monthly cabotegravir, showed similarly high rates of viral suppression. A UCSF study further confirmed the value of long-acting injectables, with 98% viral suppression after 48 weeks among patients who previously struggled with oral medication.

Diverse Patient Preferences

Research confirms that preferences for HIV treatment vary significantly. A recent study identified three distinct preference groups: those preferring implants (29%), those preferring long-acting oral or injectable options (35%), and those preferring daily or long-acting oral treatments (36%). These preferences correlated with factors like age, education, injection aversion, and adherence to current therapy.

This heterogeneity underscores that "the failure of current daily oral ART to achieve viral suppression for all people living with HIV has shown that there is no one-size-fits-all in HIV care." Offering a range of options will be essential to address diverse needs and preferences, potentially improving both adherence and outcomes.

Access Barriers and Coverage Challenges

Despite the promising scientific advances in long-acting treatment and prevention therapies, significant structural barriers threaten to limit their reach to the communities that need them most. The complex distribution and administration requirements for these medications create unique challenges not seen with oral HIV medications.

According to data from NASTAD, the Wholesale Acquisition Cost (WAC) for Apretude (cabotegravir for PrEP) is $3,700 per dosing kit, translating to approximately $22,200 annually for maintenance doses, or about $25,900 for the first year with initiation doses. This cost, while lower than the $40,000 often cited for Cabenuva (the treatment version), remains substantially higher than generic oral PrEP. Unlike oral medications, these injectable options also require additional costs for clinic visits and administration fees, further complicating access.

For people relying on AIDS Drug Assistance Programs (ADAPs), coverage remains inconsistent. According to the International Association of Providers of AIDS Care (IAPAC), six states (Missouri, Kentucky, Louisiana, Oklahoma, Texas, and South Dakota) and some U.S. territories do not cover injectable HIV medications through their ADAP programs. Even in states that do provide coverage, the distribution system for these medications differs significantly from oral medications. As NASTAD explains, long-acting injectables are distributed through "buy-and-bill," "white bagging," or "clear bagging" mechanisms involving specialty distributors or pharmacies rather than traditional retail pharmacies, creating additional logistical barriers.

While the Biden Administration issued updated guidance in October 2024 requiring health insurers to cover all three FDA-approved forms of PrEP without cost-sharing, this mandate faces legal challenges. The Supreme Court has agreed to hear a lawsuit challenging the Affordable Care Act's preventive services provision, with arguments commencing in spring 2025 and a decision expected by July. This case could potentially eliminate the requirement for insurance plans to cover preventive services like PrEP without cost-sharing.

These access challenges disproportionately affect those at highest risk for HIV. Despite the recommendations for PrEP that now include newer formulations, PrEP uptake remains unequal. The Centers for Disease Control and Prevention (CDC) has estimated that the proportion of persons with indications for PrEP who received it was 60.5% among White persons vs 7.9% in Black persons and 13.8% in Hispanic/Latino persons. Without policy intervention to address these barriers, the remarkable scientific progress in HIV prevention and treatment risks benefiting only those with privileged access to healthcare while leaving behind the communities with the greatest need.

Political Context and Threats to Progress

The current political landscape presents additional challenges to expanding access to long-acting injectables for HIV treatment and prevention. The Republican-led Congress is considering plans to cut Medicaid by potentially $880 billion or more to help pay for tax cuts, according to a Kaiser Family Foundation report. Such reductions would likely impact access to these innovative but costly treatments.

At the international level, the Trump administration's pause on PEPFAR-funded prevention services threatens to reverse progress in global HIV prevention efforts. As Jirair Ratevosian writes in his CROI analysis, "The Trump administration now faces a choice: either let PEPFAR's legacy crumble or seize this opportunity to lead the next phase of HIV prevention."

It's worth noting that Medicaid enrollees across the political spectrum express concerns about potential program cuts. KFF focus groups found that "both Trump and Harris voters valued their Medicaid coverage and the access to health care services, mental health services, and medications for themselves and their children it provides." Participants described losing Medicaid as potentially "devastating" and likely to lead to serious consequences for their physical and mental health.

Bridging the Gap

To ensure equitable access to these breakthrough HIV prevention and treatment options, several policy approaches should be considered:

1. Strengthen CMS Guidance on Long-Acting Injectables: The Centers for Medicare & Medicaid Services should update its informational bulletins on HIV prevention and care delivery to reflect the latest advancements in longer-acting therapies and issue specific policy guidance on Medicaid's role in supporting PrEP uptake and persistence.

2. Defend Preventive Service Coverage: Advocacy efforts should focus on defending the ACA's preventive services mandate as the Supreme Court considers challenges to this provision.

3. Expand ADAP Coverage: State ADAP programs that do not currently cover long-acting injectables should be encouraged to add these medications to their formularies, potentially with additional federal support to offset costs.

4. Engage in Value Assessment: Payers, including Medicaid and Medicare, should evaluate the long-term clinical and economic benefits of these options, including reduced transmission, improved quality of life, and potentially fewer hospitalizations due to better adherence.

Conclusion

The scientific advancements presented at CROI 2025 offer unprecedented opportunities to transform HIV prevention and treatment. Once-yearly prevention therapies and twice-yearly treatment regimens could dramatically improve adherence, reduce transmission, and enhance quality of life for millions of people living with or at risk for HIV.

However, without concerted policy action to address access barriers, these innovations risk becoming available only to those with privileged access to healthcare, potentially widening rather than narrowing health disparities. As long-acting HIV therapies move closer to widespread availability, advocates, policymakers, healthcare providers, and industry partners must work together to ensure that these scientific breakthroughs translate into public health impact for all communities affected by HIV.

The gap between what's scientifically possible and what's accessible represents both a policy failure and a moral challenge. Bridging this gap requires political will, innovative financing approaches, and a commitment to health equity that matches the remarkable scientific progress we've witnessed.