Third Wave of Medicare Drug Price Negotiation Adds More Potential Peril

The  Centers for Medicare & Medicaid Services (CMS) recently announced its selections for the third cycle of drug price negotiations. For this iteration, not only is it the first time Medicare Part B drugs are on the list, but it is also the first time an infectious disease drug is on the list. The infectious disease drug selected is Biktarvy, a widely used HIV antiretroviral. The decision to start including Part B drugs has many stakeholders concerned, given the distinctly different nature of administration and reimbursement in comparison to Part D drugs. The inclusion of an infectious disease drug, specifically, Biktarvy, is significant because the previous focus was on non-infectious chronic conditions. Including HIV-antiviral drugs and other infectious disease treatments is concerning, given the potential for adverse effects on access.

The selection of Part B drugs is significant because those are medications that cannot be self-administered. These drugs are often administered in a clinical setting, such as an infusion center, hospital outpatient department, or physician's office, or, in certain circumstances, in a home setting by authorized personnel. Part B drugs often include cancer chemotherapy, immunosuppressants, and some vaccines. Entyvio, Orencia, Cosentyx, Cimzia, Xolair, and non-cosmetic Botox are the drugs clearly delineated as Part B-qualified on the third cycle list. The aforementioned drugs treat conditions including Crohn’s disease, ulcerative colitis, plaque psoriasis, asthma, and ankylosing spondylitis. These are potentially debilitating conditions that patients depend on for an acceptable quality of life.

Many physician-administered Part B drugs are purchased by practices via a ‘buy-and-bill’ system. This is when physicians buy, store, and administer the medications directly and then bill Medicare. Presently, physicians are reimbursed on the Average Sales Price (ASP) plus an additional 6% fee. The Maximum Fair Price (MFP) drug negotiation structure means that reimbursement would be limited to the negotiated price. Thus, physicians would be at a higher financial risk of having to purchase medications at acquisition prices higher than the MFP reimbursement rate. In theory, the CMS guidance is supposed to require manufacturers to offer physician-administered drugs to practices at the MFP. However, Part B drugs are not privy to the rebates and PBM negotiations that Part D drugs are.

Therefore, the cost differential between acquisition prices and MFP is higher. If the lack of enforcement results in physicians purchasing drugs at acquisition prices well above MFP reimbursement, then they are financially at a loss. If practices then have to wait on the proposed Medicare Transaction Facilitator (MTF) to recoup full reimbursement from manufacturers, they are financially floating a fiscal deficit. In this case, time is literally money, which adversely affects practices’ ability to function and provide care. Moreover, physicians would have to manage the purchasing of inventory of the same drugs at non-MFP commercial prices for their non-Medicare patients. This not only increases the administrative burden but also the up-front financial risk.

The selection of Biktarvy for the drug negotiation list generates a nuanced, different subset of concerns. HIV medications are generally covered under Medicare Part B. A notable exception is provider-administered HIV pre-exposure prophylaxis (PrEP) drugs for prevention that are covered with no cost-sharing, thus zero dollar deductibles or copays, as long as it is for prevention and not treatment. HIV treatment medications, such as Biktarvy, under Part D are subject to deductibles, copays, and coinsurance based on the particular plan, such as Medicare Advantage. Starting in 2025, Part D includes a $2,000 annual cap on out-of-pocket drug spending. Additionally, antiretrovirals are among the six protected classes that Medicare plans are required to cover regardless of the drug formulary.

Medicare Part D patients cannot use patient assistance programs (PAPs), such as ‘copay coupon cards’ for medications like Biktarvy. However, they are eligible for financial assistance through AIDS Drug Assistance Programs (ADAPs), State Pharmaceutical Assistance Programs (SPAPs), charitable organizations, and the Medicare Low-Income Subsidy (LIS/Extra Help). Notably, over 70% of HIV patients on Medicare are enrolled in the LIS program for financial support in obtaining their medications. Thus, setting an MFP for Biktarvy would not lower the out-of-pocket cost for the medication since cost-sharing is a direct product of plan design. The only savings potentially generated would be for the federal government.

HIV is a unique infectious and chronic disease. Successful treatment is very individualized and has specific requirements based on biological factors. HIV treatment involves the consideration of comorbidities, immune system status, contraindications, the likelihood of successful adherence, and more. It is not a chronic disease in which multiple medications are immediately interchangeable or can be readily swapped out for something that appears ‘cheaper’ on the surface. There is also a distinct difference between a treatment and a regimen.  Biktarvy is a single-pill treatment consisting of several drugs. It is less cumbersome in terms of adherence than multiple-tablet regimens (MTRs), in which several medications are taken in single-drug-ingredient form.

Biktarvy is the only 1A DHHS-recommended single-tablet regimen (STR) that does not have viral load restrictions, does not require HBV testing, and has no resistance testing requirements. The 1A DHHS recommendation indicates the highest strength of recommendation based on the highest quality of evidence from clinical trials and other research. Studies across Medicare, commercial, and managed Medicare populations show consistently higher persistence on Biktarvy compared to other DHHS 1A-recommended regimens. Higher persistence indicates fewer medication switches, suggesting patient satisfaction and adequate disease control.

Moreover, direct-comparison studies show that Biktarvy has significantly lower total costs than dolutegravir and multi-tablet regimens, despite its higher price, due to better control and patient outcomes. (Note: these studies did not include Dovato as they were done before its widespread usage). Cost is not limited to the initial drug price. Costs include advanced medical care as a result of other ineffective regimens due to drug characteristics, barriers to adherence, or even the development of resistance. Biktarvy is also overwhelmingly recommended for initial rapid-start  HIV therapy. Rapid initiation of treatment is the ideal path to successful treatment and ultimately an undetectable viral load. This is especially important given that in the Medicare-aged community, when undiagnosed transmission is discovered, it is at a later stage of disease progression, where more immune system damage has been done. Therefore, evidence-based, consistent, effective, and reliable therapy is essential.

Ongoing data already indicate that the Medicare Drug Price Negotiation program poses significant risks to patient access, pharmacy stability, and adverse disturbances to provider services. HIV and the medical conditions most often represented in Part B coverage are all conditions that are debilitating, without vast amounts of treatment options. Most importantly, HIV is an infectious disease that is forward-promoting, meaning that its control is a matter of public health. Undetectable viral load means untransmittable disease. Adding these drugs to the third wave of negotiations risks the well-being of vulnerable patients, pharmacies, and the healthcare provider ecosystem. Ultimately, the only benefactor of any real savings would be the federal government.

The Great American Recovery Needs More Than a Slogan

On February 2, 2026, Health and Human Services Secretary Robert F. Kennedy Jr. took the stage at SAMHSA's Prevention Day to announce a $100 million pilot program addressing homelessness and addiction, alongside a meaningful expansion of medication access for families affected by opioid use disorder. In the same speech, Kennedy characterized harm reduction as a "non-effective intervention" that "enabled future drug use." The contradiction captures the current state of American addiction policy: genuine progress on biomedical treatment access undermined by ideological rejection of the evidence-based strategies needed to keep people alive long enough to access that treatment.

The scope of the crisis is not in dispute. According to the White House fact sheet accompanying the Great American Recovery Initiative, 48.4 million Americans, or 16.8% of the population, live with substance use disorder. Nearly eight in ten did not receive treatment in 2024. These numbers should focus policymakers on removing every barrier between people and care. Instead, the administration is simultaneously expanding some pathways while actively dismantling others.

The Biomedical Frontier

One area of genuine scientific promise involves glucagon-like peptide-1 (GLP-1) receptor agonists, medications originally developed for diabetes and obesity that are showing unexpected potential for treating addiction. These drugs target the brain's mesolimbic reward pathways, and emerging research indicates they may modulate the dopamine neurotransmission involved in addictive behaviors.

The implications are significant. As the British Journal of Pharmacology notes, no FDA or EMA-approved medications currently exist for cocaine or stimulant use disorders. This treatment gap disproportionately affects marginalized communities, including LGBTQ populations where methamphetamine use remains a significant concern intersecting with HIV and HCV transmission.

Early evidence is encouraging. A large observational study using the VA database found that people with alcohol use disorder who used GLP-1 medications had a 50% lower rate of alcohol bingeing compared to those not on the medications. People with opioid use disorder on these medications had a 40% lower rate of overdose. Clinical trials are now underway for multiple substance use disorders, including a trial specifically enrolling people with both cocaine use disorder and HIV.

"This research is very important because alcohol and drug addiction are major causes of illness and death, yet there are still only a few effective treatment options," Dr. Lorenzo Leggio of the National Institute on Drug Abuse and National Institute on Alcohol Abuse and Alcoholism noted in October 2025.

The critical question is access. As Penn Medicine researchers have observed, "many who struggle with addiction are multiply marginalized, making access to these medications a potential concern." The VA study data came largely from older white males, and robust research across demographics remains necessary. Breakthrough treatments mean little if the people who need them most cannot obtain them.

Meaningful Progress

Credit where due: the administration has taken concrete steps to expand medication access for opioid use disorder. On February 2, the Administration for Children and Families announced that buprenorphine, methadone, and naltrexone now qualify as prevention services eligible for Title IV-E funding. States and tribes can receive a 50% federal match to provide these medications to parents when children are at imminent risk of entering foster care. The policy reflects sound reasoning: keeping families together through effective treatment generally serves children better than separation.

The December 2025 reauthorization of the SUPPORT Act extended substance use disorder programs through fiscal year 2030 after the original legislation had languished since its 2023 expiration. The bill passed with strong bipartisan support, 366-57 in the House and by unanimous consent in the Senate.

There is also useful historical precedent from the first Trump administration. In May 2020, HHS Office for Civil Rights Director Roger Severino secured an agreement with West Virginia establishing that people in recovery using medication-assisted treatment are entitled to ADA protections. "People in recovery from opioid use disorder should never be stigmatized for seeking appropriate medical treatment that can save their lives," Severino stated at the time. That principle should guide current policy.

Where Policy Contradicts Evidence

Against these advances stands a pattern of actions that undermine the stated goal of connecting people with treatment.

The Substance Abuse and Mental Health Services Administration has lost approximately one-third of its roughly 900 employees over the past year. In January 2026, the administration briefly cancelled nearly $2 billion in SAMHSA grants before bipartisan backlash forced a reversal within 24 hours. Providers report an environment where planning for the future feels impossible.

The administration proposed folding SAMHSA into a new "Administration for a Healthy America." Congress rejected this in the FY2026 LHHS appropriations package and added structural protections requiring 60 days' advance notice before HHS reorganizations affecting CDC functions and three days' notice before grant terminations. These guardrails exist because they proved necessary.

On harm reduction, the gap between evidence and policy is particularly troubling. The July 2025 executive order "Ending Crime and Disorder on America's Streets" directed SAMHSA to defund "so-called harm reduction" programs. A subsequent SAMHSA letter drew an explicit line between acceptable overdose reversal tools like naloxone and the "ideological concept of harm reduction."

This framing ignores the government's own evidence. In December 2025, the VA published an analysis of its harm reduction programs describing syringe services programs as "one of the most effective public health interventions ever devised." The data: SSPs decrease new HIV and HCV infections by up to 67%, increase the likelihood of achieving abstinence five-fold, and "do not enable or increase drug use, nor do they cause increases in crime."

The FY2026 appropriations bill maintains Section 525, the longstanding prohibition on using federal funds for sterile needles or syringes outside narrow outbreak exceptions. Report language frames harm reduction through an abstinence-first lens, treating harm reduction and recovery as opposing forces when the evidence shows they are complementary. Meeting people where they are is how you eventually connect them with treatment.

The Syndemic Reality

These policy contradictions have real consequences for communities facing intersecting epidemics. Syringe services programs are foundational infrastructure for preventing HIV and HCV transmission among people who inject drugs. Cutting STI prevention funding by $10 million while syphilis and congenital syphilis remain at historically high levels makes no public health sense.

The approach to homelessness reveals similar contradictions. The July 2025 executive order abandons Housing First, the evidence-based model that prioritizes stable housing as a foundation for recovery. In its place, the order directs agencies to prioritize jurisdictions that enforce bans on urban camping, loitering, and open-air drug use when awarding federal grants. It encourages states to expand involuntary civil commitment and conditions housing assistance on participation in behavioral health treatment. The Bipartisan Policy Center notes this approach may invite Fair Housing Act lawsuits, since conditioning housing on treatment could constitute discrimination against people with disabilities, including those with substance use disorder.

HHS’s $100 million STREETS Initiative operates within this enforcement-first framework. Kennedy described the model as finding people on the street and moving them "from crisis to detox treatment to housing to employment." Housing comes after treatment compliance, not before. The National Alliance to End Homelessness has been direct in its assessment: "Deinstitutionalization did not cause homelessness, and re-institutionalization will not solve it."

The 2024 Point-in-Time count recorded over 770,000 people experiencing homelessness, an 18% increase from the previous year and the largest annual jump ever recorded. Those most affected include people with mental illness or substance use disorder, LGBTQ youth, and veterans, as Harvard's Howard Koh has noted. A $100 million pilot serving eight cities cannot address a crisis of this scale, particularly when the broader policy framework criminalizes the people it claims to help.

Access barriers to existing treatments compound the problem. The Cato Institute reports that 80% of U.S. counties have no opioid treatment programs, and only 600,000 of the 8 million people meeting criteria for opioid use disorder received methadone in 2024. The bipartisan Modernizing Opioid Treatment Access Act would have enabled primary care prescribing of methadone; it was not reintroduced in the current Congress.

The Path Forward

The promise of emerging treatments like GLP-1 agonists cannot be realized without the infrastructure to deliver them. A breakthrough medication for stimulant use disorder means nothing to someone cycling between encampments and emergency rooms because Housing First was abandoned in favor of treatment mandates they cannot access. Flat funding for SAMHSA, restrictions on harm reduction, and criminalization of homelessness create gaps that no medication can bridge.

"If we want to create a world where there's opioid recovery, we need to also offer affordable housing and access to affordable food and improved access to health care," Dr. Sadie Elisseou of Harvard told Behavioral Health Business. This syndemic framing should guide policy. It currently does not.

The administration cannot simultaneously expand medication access, gut the agency responsible for treatment infrastructure, restrict the harm reduction programs that keep people alive and connected to care, and criminalize the circumstances of those most in need of help. These policies do not form a coherent strategy. They form a contradiction.

Congress rejected the administration's most extreme proposals through the passage of the L-HHS funding package, but holding ground is not progress. Advocates should monitor SAMHSA implementation closely, push for evidence-based harm reduction funding that aligns with the VA's proven model, defend Housing First against ideological attack, and ensure that new treatments reach marginalized communities rather than only those with private insurance and stable housing.

The tools to address substance use disorder exist. What remains absent is a policy framework that treats people who use drugs as deserving of care rather than punishment. Until that changes, the Great American Recovery will remain a slogan, not a strategy.

Congress Rejects HIV Cuts, But Flat Funding Won't End the Epidemic

As of this writing, the FY2026 Labor, Health and Human Services appropriations bill awaits final passage. The Senate is expected to pass the package Friday night, with the House voting Monday evening. A brief partial shutdown through the weekend appears unavoidable. The following analysis assumes the legislation passes as currently written.

After a year of proposed cuts that created significant uncertainty for HIV programs and the communities they serve, Congress has negotiated a spending package that maintains current funding levels while falling short of what ending the epidemic requires. The bill, released January 20, 2026, rejects over $1.7 billion in proposed cuts and preserves funding for Ryan White, the Ending the HIV Epidemic initiative, and CDC prevention programs. It also includes the first major pharmacy benefit manager (PBM) reforms in Medicare Part D in nearly two decades, a development with significant implications for patient access to HIV and hepatitis C medications.

Yet flat funding cannot meet growing demands, particularly as long-acting therapeutics promise to transform HIV prevention and care for those who need them most. In an environment where maintaining the status quo requires extraordinary effort, advocates must reckon with an uncomfortable truth: the status quo is not enough to end the epidemic.

What Was at Stake

The path to this appropriations package has been fraught, to say the least. In May 2025, the Trump administration proposed $31.3 billion in cuts to the Department of Health and Human Services, including a 40% reduction to NIH and the consolidation of its 27 institutes into eight. The proposal called for eliminating HIV prevention programs entirely and restructuring HHS agencies, including folding SAMHSA (Substance Abuse and Mental Health Services Administration) into a new "Administration for a Healthy America."

The House Appropriations Committee's September 2025 bill embraced much of this vision. It provided zero funding for CDC HIV prevention programs, proposed cutting the Ryan White HIV/AIDS Program by 20%, and would have eliminated the Ending the HIV Epidemic initiative completely. CDC funding faced a nearly 20% reduction overall.

The final package represents a decisive rejection of these proposals. Congress preserved the Ryan White HIV/AIDS Program at $2.6 billion, maintained the Ending the HIV Epidemic initiative at $165 million, and funded CDC HIV/AIDS, Viral Hepatitis, STDs, and TB Prevention at $1.384 billion. The Minority HIV/AIDS Fund received $56 million. The bill closely tracks the bipartisan Senate proposal that advanced from committee in July 2025, a predictable outcome given the Senate's historical role as a moderating force on appropriations. The Administration's proposed cuts and the House bill were never likely to survive a bicameral process intact, but their existence created uncertainty that disrupted planning and strained already stretched public health infrastructure throughout the year.

Flat Funding Is Not Progress

Preserving current funding levels is not the same as meeting current needs. The American Academy of HIV Medicinedescribed the bill as presenting "a mixed picture for domestic HIV programs," noting that level funding will not achieve the goals set forth in the Ending the HIV Epidemic plan launched during the first Trump administration or address a rise in HIV transmission outbreaks as we’ve seen in Maine and New York.

The timing makes this particularly frustrating. Long-acting injectable treatments and prevention options are transforming what is possible in HIV care. Lenacapavir for PrEP offers twice-yearly dosing. Long-acting cabotegravir and rilpivirine provide monthly or bimonthly treatment options for people who struggle with daily pills or face adherence barriers. These innovations could reach people who have historically fallen through the cracks of our prevention and treatment infrastructure, but scaling them requires investment that flat funding cannot provide.

Prevention initiatives, workforce development, training programs, and the rollout of new innovations are particularly vulnerable under current funding levels. Without targeted investment, long-acting options will remain inaccessible to people in Medicaid-dependent, rural, and underserved areas. The tools exist to end HIV as a public health threat. The political will to fund their deployment does not.

Within the broader infectious disease category, the bill sends mixed signals. Viral hepatitis prevention received a $3 million increase to $46 million, one of the few areas to see any growth. STI prevention, by contrast, took a $10 million cut to $164 million. While provisional 2024 data shows overall STI cases declining for the third consecutive year, reported syphilis cases and congenital syphilis remain at historically high levels, with continued increases in some demographics. Cutting prevention funding while these disparities persist is shortsighted.

Harm Reduction: Evidence Ignored

The bill's approach to harm reduction reveals a troubling gap between public health evidence and legislative ideology. Section 525 maintains the longstanding prohibition on using federal funds to purchase sterile needles or syringes, with a narrow exception for jurisdictions experiencing or at risk for HIV or hepatitis outbreaks. This reactive approach undermines prevention and contradicts the government's own evidence base.

The VA, in a December 2025 analysis of its harm reduction programs, described syringe services programs as "one of the most effective public health interventions ever devised," noting they decrease new HIV and HCV infections by up to 67% and increase the likelihood of achieving abstinence five-fold. The VA further emphasized that these programs "do not enable or increase drug use, nor do they cause increases in crime."

The appropriations bill ignores this evidence. Report language frames harm reduction through an abstinence-first lens, elevating the administration's efforts to "prioritize prevention, treatment, and long-term recovery." This framing treats harm reduction and recovery as opposing forces when the evidence shows they are complementary. Meeting people where they are is essential to eventually connecting them with treatment. Restricting proven interventions on ideological grounds costs lives.

The bill does maintain substance use disorder treatment funding, with SAMHSA receiving $7.44 billion (a $65 million increase), State Opioid Response Grants at $1.6 billion, and CARA First Responder Training at $59 million. These investments matter. But they would matter more if paired with evidence-based harm reduction that keeps people alive long enough to access treatment.

PBM Reform: A Genuine Win With Implementation Risks

The inclusion of pharmacy benefit manager reforms represents a genuine policy achievement and the first major PBM reform in Medicare Part D in nearly 20 years. For people living with HIV and hepatitis C who depend on specialty medications, these provisions could meaningfully improve access and reduce costs.

The reforms target the opaque practices that have allowed PBMs to profit at the expense of patients and plan sponsors. Beginning in 2028, PBM compensation in Medicare Part D will be delinked from drug list prices, eliminating the perverse incentive to favor higher-priced medications. PBMs will be required to pass through 100% of manufacturer rebates and fees to plan sponsors. The bill bans spread pricing in Medicaid, where PBMs have profited by charging plans more than they reimburse pharmacies. CMS receives $188 million for implementation and new authority to define and enforce "reasonable and relevant" contract terms between Part D plans and pharmacies.

The transparency provisions are equally significant. PBMs must report pricing information, including all rebates negotiated with manufacturers, directly to plan sponsors and HHS. For PBMs with affiliated mail-order or specialty pharmacies, the bill requires disclosure of any benefit design parameters that steer prescriptions to those pharmacies. This addresses a core concern: vertically integrated PBMs using formulary placement and prior authorization requirements to drive volume to their own pharmacies at the expense of patient choice and community pharmacy access.

For people living with HIV, the stakes are concrete. Specialty HIV medications flow through PBM-controlled channels that have historically lacked transparency around rebates, formulary decisions, and pharmacy reimbursement. The reforms create mechanisms to challenge contract terms that effectively exclude community pharmacies or impose unreasonable administrative burdens. The appeals process for pharmacies to dispute terms that fail the "reasonable and relevant" standard could prove particularly important for independent and specialty pharmacies serving HIV populations.

The risk, as always, lies in implementation and industry adaptation. PBMs have proven adept at restructuring their business practices to maintain margins when regulations target specific revenue streams. The provisions take effect in 2028 for Medicare and 2029 for pharmacy contract standards, giving industry ample time to identify workarounds. Advocates should watch for attempts to shift costs to patients through benefit design changes, or to game the "reasonable and relevant" standard through contract terms that are technically compliant but practically exclusionary. The history of PBM regulation is a history of regulatory arbitrage, and vigilance will be required to ensure these reforms deliver their intended benefits.

Structural Protections and Access Provisions

Beyond funding levels, the bill includes important structural provisions. It rejects the administration's proposed HHS restructuring and requires the Secretary to provide detailed justification to Congress at least 60 days before any reorganization affecting CDC functions. Grant terminations now require three days' advance notice to appropriations committees. These guardrails matter in an environment where administrative action has disrupted programs faster than legislative oversight can respond.

The package extends Medicare telehealth waivers through December 31, 2027, maintains community health center funding at $4.6 billion plus bridge funding, and delays Medicaid disproportionate share hospital cuts until September 2028. These provisions support healthcare access in underserved communities where HIV and viral hepatitis programs depend on functioning safety-net infrastructure.

The Work Ahead

Assuming the bill passes as expected, funding appropriated is not funding effectively deployed. The same administration that proposed eliminating these programs will now oversee their implementation. How HHS manages grant administration, staffing, and program guidance will determine whether level funding translates into maintained services or quiet erosion. The bill's requirements for advance notice on grant terminations and reorganization plans provide some guardrails, but vigilance will be required.

The United States has the tools to end HIV as a public health threat. Long-acting prevention and treatment options could reach people who daily pills cannot. Harm reduction keeps people alive and connected to care. Ryan White and the EHE initiative provide the programmatic infrastructure. What we lack is the political will to fund these efforts at the scale required and the moral clarity to implement evidence-based policy over ideological preference.

Flat funding is not progress. It is a holding pattern in an environment where holding ground required effort. The work ahead is ensuring these programs are implemented effectively while continuing to push for the investment these programs actually need. The fight for adequate funding, evidence-based policy, and equitable access continues.

ACA Subsidies in Limbo: What the Senate Framework Means for Patients

The enhanced Affordable Care Act (ACA) premium tax credits expired on January 1, 2026, and millions of Americans are now facing the consequences. According to the Kaiser Family Foundation, subsidized enrollees are seeing their out-of-pocket premium payments increase by an average of 114%. For a single mother in social work like Katelin Provost, that means watching her monthly premium jump from $85 to nearly $750, a ninefold increase that forces an impossible choice between her own coverage and her daughter's.

This is the reality for more than 20 million Americans who benefited from the enhanced subsidies first enacted in 2021 as a COVID-19 pandemic response. The Wall Street Journal reports that roughly four in ten ACA enrollees had been paying nothing toward their premiums under the enhanced credits—more than double the share in 2020. That era ended last week, and Congress is now scrambling to respond amid growing political pressure and the specter of another government shutdown deadline on January 30.

The House Vote: Forcing the Issue

Last Thursday, the House passed a three-year extension of the enhanced subsidies, a bill that has no chance of becoming law in its current form. The Senate rejected an identical measure in December. So why hold the vote?

The answer lies in a procedural rebellion that caught House leadership off guard. Four swing-district Republicans—Reps. Mike Lawler of New York and Robert Bresnahan, Brian Fitzpatrick, and Ryan Mackenzie of Pennsylvania—signed a Democratic discharge petition to force the vote over Speaker Mike Johnson's objections. Last Wednesday, nine Republicans joined Democrats on a procedural motion to advance the bill.

These centrist Republicans are calculating political survival. As Rep. Fitzpatrick told The Hill, "Everyone's lamenting discharge petitions. There's an easy way to fix that: Put bills on the floor that have majority support. It's not hard." The vote serves a strategic purpose: it creates a legislative vehicle the Senate can amend and sends a clear signal that inaction carries electoral consequences in November's midterms.

The Senate Framework Takes Shape

While the House engages in political theater, a bipartisan Senate group led by Sens. Bernie Moreno (R-Ohio) and Susan Collins (R-Maine) has been negotiating a compromise. According to Politico, legislative text could be ready as early as today.

The emerging framework includes a two-year extension of enhanced subsidies with several Republican-demanded reforms. The Wall Street Journal outlines the key elements: an income cap excluding households earning more than 700% of the federal poverty level (approximately $225,000 for a family of four), a requirement that enrollees pay at least $5 per month toward their coverage, and $100,000 fines on insurers who sign up "phantom enrollees" without their knowledge. In the second year, enrollees would have the option to direct their subsidy funds into a pre-funded health savings account instead of having them flow to insurance companies.

The framework also reportedly includes measures to directly fund cost-sharing reductions (CSRs), which could generate significant savings. The Committee for a Responsible Federal Budget estimates that direct CSR funding would reduce deficits by over $50 billion over a decade while lowering silver plan premiums by 10% to 20%. This would end the practice of "silver loading," where insurers inflate silver plan premiums to compensate for CSR costs the federal government stopped paying in 2017.

Sen. Moreno told NPR, "We're in the red zone. But that does not mean a touchdown. It could mean a 95-yard fumble."

The Barriers to a Deal

Two sticking points threaten to derail negotiations: abortion coverage and the elimination of $0 premium plans.

On abortion, Republicans want explicit language preventing subsidies from flowing to plans that cover the procedure. Democrats counter that current law already addresses this concern—ACA plans that cover abortion must charge enrollees a separate $1 per month, segregating federal funds from abortion services. Sen. Ron Wyden (D-Ore.) warned Fox News, "I am not going to open the door to Hyde, given what happens and what has been seen historically when you do that. If you open the door, it will get drafty in a hurry."

President Trump complicated matters when he told House Republicans to be "flexible on Hyde," drawing pushback from conservatives. Sen. Moreno has since indicated the framework does not change current abortion policy, calling the issue "peripheral" to the core negotiations.

The second obstacle carries more direct implications for patient access. The proposed $5 monthly minimum premium—designed as an anti-fraud measure—would eliminate $0 premium plans that currently cover millions of low-income enrollees. Sen. Wyden called this a "rate hike" affecting 8 million people. Sen. Jeanne Shaheen (D-N.H.) noted, "Data shows that you lose a lot of people at the lowest income levels when you do that."

This concern is grounded in evidence. The NIH Clinical Guidelines on Antiretroviral Therapy are direct: "Out-of-pocket costs for people with HIV can be prohibitive, creating a barrier to the initiation and continuation of ART. Cost sharing results in higher rates of people not initiating ART, prescription abandonment at the pharmacy, decreased adherence, and more frequent drug discontinuation." The guidelines note that in 2022, the CDC's Medication Monitoring Project found that among people with HIV who had stopped taking antiretroviral therapy, 34% reported that money or insurance problems contributed to stopping treatment. For people managing chronic conditions requiring consistent care, even modest cost-sharing can disrupt treatment continuity with serious downstream consequences for both personal health and public health goals.

Why This Matters for People Living with Chronic Conditions

The evidence on cost-sharing and health outcomes should inform how we evaluate any compromise. The Commonwealth Fund's 2023 Health Care Affordability Survey found that 37% of marketplace enrollees reported delaying or skipping needed care due to cost in the prior 12 months. Among those who delayed care, 61% said a health problem got worse as a result. One-third of marketplace enrollees reported paying off medical debt.

These affordability challenges fall disproportionately on certain communities. The Center on Budget and Policy Priorities notes that 23% of Black enrollees and 18% of Hispanic enrollees in private insurance reported problems paying medical bills, compared to 15% of white enrollees.

For people living with HIV, coverage continuity directly affects health outcomes. The NIH Clinical Guidelines emphasize that "health insurance and prescription drug coverage can directly affect clinical outcomes for people with HIV; changes to coverage can result in lapses in viral suppression and should be anticipated as best possible." The guidelines specifically warn that disengagement from care occurs more frequently during transitions in coverage, including when people switch insurance plans or experience changes in employment status. With wholesale acquisition costs for commonly prescribed single-tablet antiretroviral regimens ranging from approximately $2,800 to $4,700 per month, the stakes of coverage disruption are substantial.

As CANN's December analysis detailed, New York City's 2024 HIV surveillance data showed diagnoses rising for the fourth consecutive year, with 86% of new diagnoses among Black or Latino people and 48% of those interviewed lacking health insurance. The Ryan White HIV/AIDS Program and AIDS Drug Assistance Programs (ADAPs) provide critical safety net support, but these programs work best when complementing stable insurance coverage rather than substituting for it.

The KFF analysis of proposed Medicaid cost-sharing requirements offers a window into what happens when cost barriers are introduced for vulnerable populations. Under a maximum cost-sharing scenario, Medicaid expansion enrollees with three or more chronic conditions could face average annual costs of $1,248—potentially exceeding the 5% of income cap for those at 100% of the federal poverty level.

What Comes Next

Any Senate deal requires 60 votes to overcome a filibuster, meaning at least seven Democrats must join all 53 Republicans, or significant bipartisan support must materialize. Sen. Moreno has indicated he needs 35 Republican senators on board to feel confident in the level of GOP support. Senate Majority Leader John Thune has said any deal must get a "big vote" among Republicans.

The political calendar adds pressure. The January 30 government funding deadline looms, and neither party has appetite for another shutdown after last fall's 43-day standoff. An extended open enrollment period would likely accompany any deal, giving people who dropped coverage due to premium spikes a chance to re-enroll.

For advocates, the coming days demand close attention. The specific legislative text—particularly provisions around minimum premiums, income verification, and any changes to covered services—will determine whether a compromise actually improves access or introduces new barriers. Contact your Senators to emphasize that affordability must remain central to any reform. Monitor for the final text expected early next week. And prepare to help community members navigate an extended enrollment period if one materializes.

The enhanced subsidies enabled record ACA enrollment of 25.2 million in early 2025, according to KFF data. What happens in Congress over the next two weeks will determine whether that progress holds or unravels, and whether the people who depend on affordable coverage can continue accessing the care they need.

The 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.

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.

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.

Flying Blind: Public Health Without Population Data

On January 31, 2025, federal health agencies began removing thousands of webpages and datasets from public access in response to executive orders from the Trump Administration targeting "gender ideology" and diversity, equity, and inclusion initiatives. By February 1, over 8,000 federal webpages and 450 government domains had gone dark, including critical public health resources from the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and Food and Drug Administration (FDA).

Immunologist and microbiologist Dr. Andrea Love, Executive Director of the American Lyme Disease Foundation, minced no words regarding the executive actions: "If you weren't clear: a President ordering a Federal health and disease agency to delete pages on its website is a public health crisis." The scope of removed content spans decades of population health data, from the 40-year-old Youth Risk Behavior Surveillance System to current HIV surveillance statistics. Many pages that have returned now display banners warning of further modifications, creating uncertainty around the future availability and integrity of federal health data.

This sudden removal of public health information echoes similar challenges faced during the early COVID-19 response, when limited access to comprehensive population data hampered the ability to identify and address emerging health disparities. As we examine the current situation, the key question becomes: How can evidence-based public health function without access to the very data that drives decision-making and ensures equitable health outcomes?

Scale of Impact

The removal of federal health datasets represents an unprecedented disruption to public health surveillance and research capabilities. According to KFF analysis, key resources taken offline include:

The CDC's Youth Risk Behavior Surveillance System, which for 40 years has tracked critical health indicators among high school students. This dataset has been instrumental in identifying emerging health crises, including the rise in youth mental health challenges and substance use patterns.

CDC's AtlasPlus tool, containing nearly 20 years of surveillance data for HIV, viral hepatitis, sexually transmitted infections, and tuberculosis, is no longer accessible. This platform has been essential for tracking disease trends and designing targeted prevention strategies.

The Social Vulnerability Index and Environmental Justice Index - critical tools for identifying communities at heightened risk during public health emergencies and environmental disasters - have also been removed. These resources help public health officials allocate resources effectively during crises and natural disasters.

Public health researchers report that the loss of demographic data collection and analysis capabilities particularly impacts their ability to identify and address health disparities.

As Dr. Jennifer Nuzzo, director of the Pandemic Center at Brown University School of Public Health notes, "Health equity is basically all of public health."

The ability to analyze health outcomes across different populations is fundamental to developing effective interventions and ensuring equitable access to care.

The CDC's healthcare provider resources have also been affected, including treatment guidelines for sexually transmitted infections and HIV prevention protocols. This loss of clinical guidance materials creates immediate challenges for healthcare providers working to deliver evidence-based care.

Beyond individual datasets, this wholesale removal of public health information disrupts the interconnected nature of federal health data systems. Many of these resources inform each other, creating compounding effects when multiple datasets become unavailable simultaneously.

Research and Care Delivery Impact

The removal of federal health data creates immediate challenges for both research and clinical care delivery. The Infectious Diseases Society of America (IDSA) warned that removing HIV and LGBTQ+ related resources from CDC websites "creates a dangerous gap in scientific information and data to monitor and respond to disease outbreaks."

This impact is particularly acute in STI prevention and treatment. Including gender and demographic data in research helps identify populations at elevated risk for infections like syphilis, which has reached its highest levels in 50 years. Without this data, developing targeted interventions becomes significantly more challenging.

For HIV prevention specifically, the loss of CDC's AtlasPlus tool removes access to critical surveillance data that guides prevention and treatment strategies. Healthcare providers report that missing CDC clinical guidance on HIV testing and PrEP prescribing creates uncertainty in delivering evidence-based care.

David Harvey, executive director of the National Coalition of STD Directors, emphasizes the immediate clinical impact: "Doctors in every community in America rely on the STI treatment guidelines to know what tests to run, to know what antibiotic will work on which infection, and how to avoid worsening antibiotic resistance. These are the guidelines for treating congenital syphilis, for preventing HIV from spreading, and for keeping regular people healthy every time they go to the doctor."

The loss of demographic data collection capabilities also threatens to undermine decades of progress in understanding and addressing health disparities. Research requiring analysis of health outcomes across different populations may face delays or compromised results without access to comprehensive federal datasets.

This disruption extends beyond immediate clinical care to impact long-term research projects and clinical trials. FDA guidance documents about ensuring diverse representation in clinical studies are no longer accessible, potentially affecting the development of new treatments and their applicability across different populations.

Historical Context and Implications

The current removal of federal health data follows concerning precedent. During the COVID-19 pandemic, similar actions to restrict access to public health data hampered effective response. In July 2020, hospital COVID-19 data reporting was moved from CDC control to a private contractor, leading to significant gaps in data access and accuracy that impeded pandemic response.

As Harvard epidemiologist Nancy Krieger notes, "There's been a history in this country recently of trying to make data disappear, as if that makes problems disappear... But the problems don't disappear, and the suffering gets worse."

This observation proved accurate during COVID-19, when limited access to comprehensive demographic data delayed recognition of disparate impacts on communities of color.

Early COVID-19 response efforts were hampered by insufficient data about how the virus affected different populations. This information gap contributed to delayed identification of emerging hotspots and slowed targeted intervention efforts. The result was preventable disparities in COVID-19 outcomes, particularly among Black, Hispanic, and Native American communities.

Today's wholesale removal of federal health data risks recreating similar blind spots across multiple public health challenges. Without demographic data to identify disparities and guide interventions, public health officials lose the ability to effectively target resources and measure outcomes. As Dr. Jennifer Nuzzo emphasizes, this data is "really important for us to answer the essential question of public health, which is, Who is being affected and how do we best target our limited resources?"

Legal Response and Policy Challenges

On February 4, 2025, Doctors for America filed suit against multiple federal agencies including the Office of Personnel Management (OPM), Centers for Disease Control and Prevention (CDC), Food and Drug Administration (FDA), and Department of Health and Human Services (HHS).

The lawsuit challenges two key actions: OPM's directive requiring agencies to remove webpages and datasets, and the subsequent removal of critical health information by CDC, FDA, and HHS. The complaint argues these actions violated both the Administrative Procedure Act and the Paperwork Reduction Act of 1995 (PRA).

Under the PRA, federal agencies must "ensure that the public has timely and equitable access to the agency's public information" and "provide adequate notice when initiating, substantially modifying, or terminating significant information dissemination products." The complaint alleges agencies failed to provide required notice before removing vital health information and datasets.

The legal challenge emphasizes the fundamental role these datasets play in public health. According to the filing, "The removal of the webpages and datasets creates a dangerous gap in the scientific data available to monitor and respond to disease outbreaks, deprives physicians of resources that guide clinical practice, and takes away key resources for communicating and engaging with patients."

Nine out of twelve public health researchers on CDC's advisory board signed a letter to the agency's acting director seeking explanation for the data removal. These scientists expect to face consequences for speaking out but emphasize the critical nature of maintaining public access to health data.

Data Preservation Efforts

As federal health datasets disappeared, researchers and institutions launched rapid preservation efforts. Harvard University organized its first "datathon" to archive website content through the Wayback Machine, while other academic institutions worked to preserve datasets locally.

The Kaiser Family Foundation reports having downloaded significant portions of CDC data prior to removal. While some CDC data files have been restored, they currently lack essential documentation like questionnaires and codebooks needed for analysis.

For healthcare providers needing immediate access to clinical guidelines, medical associations are working to provide archived copies of treatment protocols. The Infectious Disease Society of America and HIV Medicine Association are coordinating with members to ensure continued access to critical clinical resources.

State health departments maintain some parallel data collection systems that may help fill gaps in federal surveillance. However, these systems often rely on federal frameworks for standardization and analysis, potentially limiting their utility as standalone resources.

These preservation efforts, while necessary, cannot fully replace the coordinated federal data infrastructure needed for comprehensive public health surveillance and research.

Recommendations

Healthcare providers and public health officials should consider these immediate steps to ensure continued access to vital health information:

Data Access and Preservation

• Download and securely store copies of restored CDC datasets, including documentation

• Maintain offline copies of current clinical guidelines and protocols

• Establish relationships with academic institutions archiving federal health data

Alternative Data Sources

• Connect with state and local health departments to access regional surveillance data

• Utilize medical society and professional organization resources for clinical guidance

• Consider participating in alternative data collection networks being established by research institutions

Advocacy Actions

• Support ongoing legal efforts to restore data access

• Document specific impacts of data loss on care delivery and research

• Engage with professional organizations coordinating preservation efforts

Future Planning

• Develop contingency plans for maintaining essential health surveillance

• Build redundant data collection systems where feasible

• Strengthen partnerships with academic and nonprofit research organizations

These steps cannot fully replace federal health data infrastructure but may help maintain critical public health functions while broader access issues are resolved.