The Quiet Pay Cut: Rising Health Insurance Costs Are Eroding Worker Compensation

The average annual family premium for employer-sponsored health insurance reached $26,993 in 2025, according to KFF's (Kaiser Family Foundation) annual benchmark survey of employers. Workers contribute $6,850 of that cost out of their paychecks. Family premiums rose 6% this year, continuing a pattern of 6 to 7% annual increases over the past three years, outpacing both general inflation (2.7%) and wage growth (4%). Costs are expected to accelerate: Aon estimates that employer coverage will surge approximately 9.5% in 2026, the largest single-year increase in at least 15 years. About 154 million Americans under 65 depend on employer-sponsored coverage, making this a compensation crisis hiding in plain sight.

The Hidden Pay Cut

Every dollar an employer spends on health insurance premiums is a dollar unavailable for wages. This is well-established economics, and the scale of it is staggering. A January 2024 study published in JAMA Network Openfound that from 1988 to 2019, the mean cumulative lost earnings associated with growth in health insurance premiums was $125,340 per family, nearly 5% of total earnings over that 32-year period. If employer-sponsored insurance costs had remained at the same proportion of the 1988 compensation package, the median family with employer coverage could have earned $8,774 more in annual wages by 2019.

This cost falls hardest on the people who can least afford it. The same JAMA Network Open study found that by 2019, health care premiums consumed 19.8% of compensation for Hispanic families and 19.2% for non-Hispanic Black families with employer-sponsored insurance, compared to 13.8% for non-Hispanic White families. At the 20th percentile of earnings, premiums consumed 28.5% of compensation, compared to just 3.9% at the 95th percentile. Because most employers do not adjust premium contributions by income, rising health insurance costs function as a regressive tax on lower-wage workers, widening racial and economic inequality through a mechanism that rarely gets the attention it deserves.

Fresh data from the Federal Reserve Bank of New York confirms this dynamic is accelerating. In February 2026 regional business surveys, firms reported health insurance cost increases averaging more than 13%. Those same firms reported that absent the cost increases, they would have raised wages by roughly an additional percentage point, representing a 20% drag on wage growth. To put the numbers in perspective: the average annual premium for employer-sponsored family coverage is now roughly equivalent to the full-time annual wage of a worker earning $15 per hour.

When Workers Bear the Burden

As premiums climb, employers pass costs along through higher deductibles and out-of-pocket expenses. The average single-coverage deductible in 2025 stands at $1,886, up 17% over five years, according to the KFF 2025 Employer Health Benefits Survey. Workers at small firms face average deductibles of $2,631, and more than half of covered workers at those firms now face deductibles of at least $2,000. Nearly three-quarters (72%) of covered workers face out-of-pocket maximums above $3,000, with one in five facing maximums above $6,000.

The consequences are measurable and immediate. A March 2026 Employee Benefit Research Institute (EBRI) survey found that four in ten privately insured adults reported higher healthcare costs in the past year. Among those, roughly a third had trouble covering their bills, and a quarter reduced retirement contributions. People are delaying and avoiding care because of cost. As EBRI director Paul Fronstin noted, affordability now shapes both access to care and longer-term financial security.

For people living with HIV and other chronic conditions, delayed care carries compounding risks. Interrupted treatment, missed appointments, and medication non-adherence can undermine viral suppression and lead to worse health outcomes, higher long-term costs, and greater strain on the healthcare system.

What's Driving the Increase

Employers point to multiple converging cost drivers. Among large firms in the KFF survey, 36% say prescription drug prices contributed "a great deal" to higher premiums in recent years, followed by the prevalence of chronic disease (30%), higher utilization of services (26%), and hospital prices (22%). GLP-1 medications for weight loss have become a particular flashpoint: among the biggest employers covering these drugs, 59% say utilization exceeded expectations and two-thirds report a significant impact on prescription drug spending.

The problem for employers is that their usual playbook is running out of room. Strategies like changing plan designs and managing vendors more tightly are likely to shave only two or three percentage points from the average increase, according to Aon. When costs are rising 9.5%, that arithmetic does not work, and 64% of CFOs and CEOs say an 8 to 10% cost increase is the threshold for making significant changes to their coverage offerings. Those changes typically mean workers pay more.

The Small Business and Nonprofit Squeeze

Small businesses face an even sharper version of this crisis. Half of the nation's smallest employers do not offer health insurance at all, and those that do are struggling to hold on. Rachel Bernier-Green, who started the financial consulting firm EJ Consortium in Chicago in 2023, began offering health benefits to her six workers in 2025. By the time premiums spiked, she was forced to drop coverage entirely. In the nonprofit sector, where mission-driven organizations serve communities affected by chronic conditions and health disparities, this dynamic is particularly concerning.

At the Community Access National Network (CANN), we take a different approach. "Given the work that we do, it is critical in actualizing our values — our goals for the rest of the patient community — to ensure our employees are well-covered and able to realize their full compensation value," said Darnell Lewis, CANN Board Chair. "This means providing our employees with high-quality, low deductible, low co-pay / co-insurance, and low maximum out of pocket health insurance coverage with 100% of the monthly premium assumed by CANN for all employees. We also recognize the need for ensuring our employees' families are well covered, which is why we covered 50% of dependent premiums for the same quality of coverage. We are actively modeling the best practices in compensation and coverage that we urge the rest of the non-profit sector and all businesses to adopt."

Too many nonprofits treat employee benefits as an afterthought. When an organization's mission centers on health access and health equity, the benefits it provides its own people should reflect that mission. Taking care of the people who do the work is a core organizational value, and it is a standard the sector should rise to meet.

PBM Reform: A Policy Opening

A significant share of premium growth traces back to prescription drug costs, and 2026 has brought the most meaningful federal action on pharmacy benefit manager (PBM) reform in decades. Three converging actions deserve attention. On January 29, 2026, the U.S. Department of Labor (DOL) proposed a rule requiring PBMs to disclose rebates, spread pricing, and pharmacy claw-backs to plan fiduciaries of self-insured group health plans, covering approximately 90 million Americans. Days later, the 2026 Consolidated Appropriations Act (CAA) was signed into law on February 3, requiring 100% rebate pass-through for Employee Retirement Income Security Act (ERISA) plans and delinking PBM compensation from drug prices in Medicare Part D beginning in 2028. On February 4, the Federal Trade Commission (FTC) settled with Express Scripts, requiring elimination of spread pricing and point-of-sale rebate pass-through in its standard offerings by January 2027, while litigation continues against Caremark Rx and OptumRx.

These reforms target an opaque layer of the drug supply chain that has long driven up costs for plans and the people they cover. For people living with HIV, where antiretroviral therapy is both lifesaving and lifelong, PBM practices affect formulary design, out-of-pocket costs, and pharmacy access in direct and material ways. Comments on the DOL proposed rule are due March 31, 2026, and patient advocates, employers, and labor organizations should submit them.

Where Employer and Labor Interests Align

Rising premiums represent one of the clearest points of alignment between employers and labor. Unions have historically secured better health benefits for members. Bureau of Labor Statistics data show that 96% of union workers have access to medical care benefits compared to 69% of non-union workers, with lower premium contributions and lower deductibles. Some unions have gone further, partnering with employers to address the root causes of cost growth. A Boston hotel workers' union built provider networks excluding the highest-cost hospitals and offered no-deductible plans at premiums one-tenth the national average, with emergency room use dropping significantly in the first year. In New Jersey, public-sector unions used a PBM "reverse auction" model that secured a contract 10% below projections and saved $1.5 billion over three years.

These examples demonstrate that cost containment does not have to mean cost-shifting. Unions, as both purchasers and users of health benefits, are positioned to push for reforms that target provider prices and supply-chain opacity rather than asking workers to accept higher deductibles and thinner coverage.

What We Can Do

The policy window is open. Here is where we need action:

Policymakers should strengthen PBM transparency reforms, ensure the DOL proposed rule includes robust enforcement mechanisms, and monitor implementation of the 2026 CAA provisions. State-level cost commissions and hospital price transparency initiatives deserve expanded support.

Employers should review PBM contracts now, well before the CAA requirements take effect for plan years beginning January 1, 2029. Coalition purchasing strategies and value-based plan designs that target price rather than utilization offer more sustainable paths than continuing to shift costs to workers.

Advocates and labor organizations should submit comments on the DOL proposed rule before the March 31 deadline. We should push for extending commercial drug pricing reforms and advocate for policies that address the underlying drivers of premium growth.

The math here is straightforward: rising health insurance costs reduce wages, deepen inequality, and force people to delay or forgo care. For those of us working in patient advocacy, health equity, and public health, this should be a unifying cause. We all share an interest in a system where comprehensive coverage is the standard, not the exception.

Warren and Hawley Want to Break Up Big Medicine. Here's What the Bill Actually Does.

On February 10, 2026, Sen. Elizabeth Warren (D-Mass.) and Sen. Josh Hawley (R-Mo.) introduced the Break Up Big Medicine Act, a bipartisan bill that would force the structural separation of healthcare conglomerates that simultaneously own insurance companies, pharmacy benefit managers (PBMs), pharmacies, physician practices, and drug wholesalers. The political pairing is unusual: a progressive Democrat and a populist Republican, finding common ground on the idea that a handful of corporate giants have rigged the healthcare supply chain in their own favor. The bill arrives as both parties scramble to address healthcare affordability ahead of the 2026 midterm elections, and just days after President Trump signed an appropriations package containing new PBM transparency rules and issued executive orders directing agencies to "reevaluate the role of middlemen" in prescription drug pricing. The political will to confront healthcare consolidation is clearly building. The question is whether this bill meets the moment.

What the Bill Does

The Break Up Big Medicine Act draws its inspiration from the Glass-Steagall Act of 1933, which separated commercial and investment banking after the financial system's collapse during the Great Depression. Applied to healthcare, the principle is the same: entities that are supposed to be bargaining competitively with one another should not be owned by the same parent company.

The bill establishes two core prohibitions. First, it bars any person or entity from simultaneously owning or controlling a medical provider or management services organization (MSO) and an insurance company or PBM. Second, it bars common ownership of a provider or MSO and a prescription drug or medical device wholesaler. Companies in violation would have one year to divest. Those who miss divestiture milestones would face automatic penalties, including 10% of profits transferred into escrow on a monthly basis and, eventually, a court-appointed divestiture trustee with authority to force asset sales. Revenue from seized profits would be deposited into a fund created by the Federal Trade Commission (FTC) and distributed to serve the healthcare needs of harmed communities.

An MSO is an entity that contracts with a medical provider to furnish administrative and business services such as payroll, payer contracting, billing and collection, coding, IT, and patient scheduling. While MSOs do not technically practice medicine, they have become the primary vehicle through which corporate entities, including insurers and private equity firms, exert operational control over physician practices without appearing on paper as the owner. The bill's explicit inclusion of MSOs is a recognition that corporate control of healthcare delivery does not require direct ownership; it can be achieved through the back office.

The enforcement architecture is broad. The FTC, the Department of Justice (DOJ) Antitrust Division, the Department of Health and Human Services (HHS) Inspector General, state attorneys general, and private citizens can all bring civil actions. The private right of action provision allows treble damages (a legal remedy where a court triples the amount of actual, compensatory damages awarded to a prevailing plaintiff), attorney's fees, and equitable relief. The FTC and DOJ would also retain forward-looking authority to review and block future transactions that would re-create the prohibited conflicts of interest.

The bill's definition of "provider" is notably expansive: it includes pharmacies (both in-patient and outpatient), physician practices, ambulatory surgery centers, urgent care centers, post-acute care facilities, home-health providers, and hospitals. This means the legislation reaches well beyond PBM-owned pharmacies to encompass the full range of insurer-owned care delivery.

The Problem It Targets

The scale of vertical integration in U.S. healthcare is difficult to overstate. Three PBMs, CVS Caremark, Express Scripts, and OptumRx, manage nearly 80% of prescription drug claims for roughly 270 million people. Each is owned by a company that also operates a health insurance plan, physician offices, and pharmacies. Three drug wholesalers control 98% of U.S. drug distribution. As of 2023, UnitedHealth Group, through its Optum subsidiary, controls approximately 10% of all American physicians, making it the single largest employer of doctors in the country. Nearly 80% of physicians now work for a corporate parent, and since 2019, nearly 4,000 independent pharmacies have closed.

The evidence on what this consolidation does to costs and quality is damning. RAND Corporation testimony to the U.S. House of Representatives found that vertical integration of hospitals or health systems with physician practices does not lower spending and does not improve quality of care. Instead, it shifts care to higher-cost settings and increases payment rates through greater negotiating power. Hospital-physician vertical integration has been associated with 10 to 14% price increases for physician services. A Commonwealth Fund analysis found vertical consolidation associated with 14% higher physician prices and 10-20% higher total spending per patient.

The FTC itself has found that vertically integrated PBMs have both the ability and incentive to steer business to their own affiliated pharmacies, reducing competition and increasing prescription drug costs. PBMs engage in spread pricing, charging health plans more for a drug than they reimburse pharmacies and keeping the difference, while simultaneously reducing reimbursements to independent pharmacies to drive them out of business.

The conflicts run deeper. As Wendell Potter detailed in Healthcare Uncovered, the joint ownership of insurance companies, PBMs, provider organizations, and pharmacies allows parent companies to game the Affordable Care Act's (ACA's) medical loss ratio (MLR) requirement. The ACA mandates that insurers spend 80-85% of premium dollars on medical care. When an insurer owns the PBM, the provider group, or the pharmacy, it can count internal payments to those entities as "medical care" for MLR purposes, even though those payments are self-dealing. This accounting maneuver converts premium dollars to profits at a rate Congress never intended.

Antitrust enforcement has proven inadequate to the task. From 2000 to 2020, only 13 mergers out of 1,164 were challenged by the FTC. As Erin Fuse Brown, professor at Brown University's School of Public Health, noted during a recent KFF Health Wonk Shop panel, antitrust enforcement has largely looked the other way on vertical consolidation, and even when agencies have attempted to bring cases, they have struggled to convince courts that vertical mergers pose a competitive risk.

The Promise for Patients and Providers

If enacted, the bill could address several of the structural conflicts of interest that drive up costs and limit patient choice. Forced separation of PBMs from their affiliated pharmacies could create a more level playing field for independent pharmacies, which currently compete against entities that also control their reimbursement rates. For people living with chronic conditions who rely on specialty medications, the current system means that the company deciding what drug is covered, how much the patient pays, and which pharmacy fills the prescription can be the same company. Breaking those links could open real competition in both pricing and access.

The bill would also force the divestiture of insurer-owned physician practices, a development that could restore meaningful clinical autonomy for physicians and potentially slow the trend of care being steered toward affiliated, higher-cost settings. Consolidation has already narrowed provider choice for patients across the country. Hospital consolidation from 1998 to 2021 resulted in 1,887 mergers and reduced the number of hospitals nationwide by about 25%. The GAO reported that rural hospital closures force residents to travel roughly 20 miles farther for common inpatient services and about 40 miles farther for less common services. When consolidated systems close facilities or eliminate services that rarely turn a profit, such as maternity wards, primary care clinics, and emergency departments, patients in underserved and rural communities face fewer doctors, longer wait times, and greater distances to travel for care. For low-income patients who may lack access to paid time off, reliable transportation, or affordable child care, those distances can mean the difference between receiving care and going without. Reducing the financial incentive for insurers to steer patients exclusively to affiliated providers could, over time, help preserve a broader range of care options in the communities that need them most.

The bill's expansive definition of "provider" and its inclusion of MSOs is significant: it closes the backdoor through which corporate entities use management services agreements to exert de facto control over physician practices without technically owning them. The private right of action with treble damages gives patients and affected parties a meaningful tool to hold companies accountable, something traditional antitrust enforcement has failed to do at scale.

The Pitfalls

The bill's ambition is also its vulnerability. A one-year divestiture timeline for restructuring trillion-dollar companies like UnitedHealth Group, CVS Health, and Cigna is aggressive by any measure. The logistics of unwinding these conglomerates, separating data systems, reassigning contracts, re-establishing independent management structures, present real operational risk. Corey Katz, a partner at Bates White Economic Consulting, cautioned during the KFF panel that policymakers should be careful of unintended consequences because the linkages in these systems are complex, and breaking them can produce adverse outcomes that were not anticipated. He pointed to the Haven joint venture between JP Morgan, Amazon, and Berkshire Hathaway, which sought to make healthcare more efficient and collapsed within five years, as evidence that restructuring healthcare delivery is harder than it appears.

Industry has already signaled opposition. CVS Health Group president David Joyner pushed back on the characterization of the system as market concentration at a House hearing in January, describing the integrated model as one that "works really well for the consumer." Evidence would seem to suggest otherwise, but Mr. Joyner is certainly welcome to his opinion.

The bill also has notable gaps. It does not address hospital-to-hospital horizontal mergers, which remain a primary driver of higher prices in local markets. It does not address private equity acquisitions of physician practices, which a GAO analysis found can lead to 4-16% increases in commercial insurance spending depending on the specialty. And it does not address the payment system incentives, particularly the persistent site-of-care payment differentials where Medicare pays two to four times more for identical outpatient procedures performed in a hospital setting versus a physician's office, that create the financial motivation for consolidation in the first place. Fuse Brown acknowledged that structural separation is a "blunt instrument" but argued that we have reached the point where antitrust tools have proven insufficient and bolder approaches are warranted.

What This Means for People Living with Chronic Conditions

For people living with HIV and other chronic conditions, pharmacy access is a persistent concern. The current vertically integrated system can dictate which pharmacy fills a prescription, what drugs appear on a formulary, and what a patient pays out of pocket. PBM-driven patient steering limits access to specialty pharmacies and 340B providers that play a critical role in serving people who are most affected by healthcare costs. Consolidation also disproportionately impacts communities of color, who, as the Commonwealth Fund noted, are more likely to face medical debt, are more vulnerable to increased costs, and are more likely to bear the brunt of the often cruel business practices that consolidation enables.

Separating PBMs from their captive pharmacies could expand real pharmacy choice for patients. But poorly managed divestiture could also temporarily destabilize specialty pharmacy networks or disrupt care coordination for people who depend on uninterrupted medication access. The details of how divestiture is structured and monitored will matter as much as the principle behind it.

Looking Forward

The Break Up Big Medicine Act faces long odds in a divided Congress. But its bipartisan sponsorship reflects a genuine shift in the political calculus around healthcare consolidation, one that cuts across party lines and ideological camps. Whether or not the bill advances, it establishes a policy framework that advocates, policymakers, and the public can build on.

We should watch closely for how recently enacted PBM transparency rules interact with these structural proposals, how state-level merger review and health equity impact assessments continue to evolve, and whether the FTC and DOJ use existing authority to pursue vertical consolidation cases more aggressively. We should also urge our elected representatives to support the bill and, critically, to demand that any restructuring of the healthcare system be evaluated for its impact on patient access, affordability, and health equity. Structural separation is a necessary conversation. Making sure the people most affected by consolidation are centered in that conversation is our responsibility.

Florida's ADAP Cuts Put 16,000 People Living with HIV at Risk

On January 8, 2026, the Florida Department of Health (DOH) sent an email to healthcare partners announcing sweeping changes to the state's AIDS Drug Assistance Program (ADAP), effective March 1, 2026. In the days that followed, thousands of Floridians living with HIV received letters informing them that their access to life-saving medications and insurance coverage would be drastically curtailed in less than two months. The announcement came with minimal warning and no prior engagement with the affected community, marking an alarming departure from decades of collaborative public health practice and threatening to unravel progress made toward Ending the HIV Epidemic.

What Florida Is Doing

The changes are significant in scope. Florida DOH is reducing ADAP income eligibility for uninsured clients from 400% of the Federal Poverty Level (FPL) down to 130% FPL, which translates to an annual income of approximately $20,345 for a single person. The state is eliminating insurance premium assistance, which previously helped people maintain coverage through the Affordable Care Act (ACA) marketplace. Florida is also removing Biktarvy, the most widely prescribed single-tablet HIV regimen, from the ADAP formulary while restricting Descovy to people with renal insufficiency.

According to the National Alliance of State and Territorial AIDS Directors (NASTAD), Florida ADAP served 32,248 clients in 2024, with 40% at or below 100% FPL, 10% between 101–138% FPL, and 50% between 138–400% FPL. With a cutoff at 130% FPL, NASTAD estimates that more than 16,000 people will lose ADAP coverage. The administration has offered a different estimate. At a January 14, 2026 Florida Senate Appropriations Committee hearing, Florida Surgeon General Joseph Ladapo estimated approximately 10,000 people would be affected.

The numbers matter less than the underlying reality: half of all Floridians currently relying on ADAP for uninterrupted access to HIV treatment face immediate risk of treatment disruption based on an administrative eligibility change, not clinical need.

The Stated Rationale and Its Problems

DOH has framed the changes as necessary to prevent a projected $120 million budget shortfall, attributing the crisis to rising health care insurance premiums and the expiration of enhanced ACA premium tax credits at the end of 2025. The federal government shutdown in October 2025, during which Republicans and Democrats fought over the impending expiration of these tax credits, did lead to their lapse on December 31. Florida, with nearly 4.5 million people receiving marketplace insurance and roughly 31% of ADAP clients enrolled in marketplace plans, faces genuine financial pressure.

What DOH has not provided is transparency around its budget calculations. At the Senate hearing, David Poole, who oversaw Florida's AIDS program from 1993 to 2005, pointed out that the state transparency website shows $120 million in rebate revenues from the prior year. Testimony from a former consumer representative to the Florida DOH ADAP Advisory Workgroup indicated that information shared with stakeholders suggests the expanded tax credits had minimal impact on the program, with insurance premiums increasing only about $150 per client annually. The state has not publicly released an ADAP budget in more than a year, according to Malcolm Ried of the U.S. People Living with HIV Caucus.

When Senator Carlos Guillermo Smith asked Kendall Kelly, director of policy and budget under Governor DeSantis, about the state's authority to make such dramatic cuts to a federally funded program, Kelly referenced a potential $700 million shortfall for the health department overall but could not provide specifics about federal funding changes. No other state has made such drastic changes to its ADAP program this year. Pennsylvania, facing similar budget pressures, reduced its eligibility from 500% to 350% FPL—a far more measured response.

The Clinical and Public Health Stakes

Treatment interruption for a person living with HIV is a clinical risk, not an administrative inconvenience. When antiretroviral therapy (ART) is interrupted, viral rebound occurs, drug resistance can develop, viral suppression is lost, and the risk of onward transmission increases. The science is clear: consistent treatment keeps people healthy and prevents new transmissions. This principle underlies the entire Ending the HIV Epidemic (EHE) initiative, which targets sustained viral suppression as one of its four core strategies.

Dr. Paul Arons, the former Medical Director of the state HIV/AIDS program from 1989 to 2007, testified that asking a person with HIV whose treatment is working to change regimens for non-medical reasons is a traumatic request. According to the U.S. Department of Health and Human Services (HHS), 89.6% of clients enrolled in the Ryan White HIV/AIDS Program achieved viral suppression as of fiscal year 2025. HIV medications have among the highest adherence rates of any chronic disease treatment. Disrupting that success for opaque and questionable budget claims defies logic and evidence-based practice.

The formulary changes compound the harm. Biktarvy is prescribed to 60% of Florida ADAP clients. The state has offered no transition plan, no guidance on which generics will replace it, and a warning that additional formulary restrictions may follow. The International Association of Providers of AIDS Care (IAPAC) has called this approach drug rationing under the banner of cost control.

A Failure of Process

Federal Ryan White legislation and HRSA HIV/AIDS Bureau (HAB) guidance require states to engage stakeholders, including people living with HIV, in program planning and to explore cost-saving measures before implementing cost-cutting measures like eligibility reductions or formulary restrictions. The ADAP Manual from HRSA HAB distinguishes between cost-saving measures (improving efficiency, expanding health care coverage, maximizing rebate collection) and cost-cutting measures (restricting enrollment or benefits). Waiting lists are described as a last resort.

Florida DOH bypassed this framework entirely. The eligibility level for Florida's ADAP program is established in regulation, requiring a public regulatory process to change. No such process was undertaken before this announcement. The announcement came with less than two months notice, days before the ACA open enrollment period ended, and without prior consultation with advisory workgroups or community partners. Testimony at the January 14 Senate hearing revealed that stakeholders learned of the changes only days earlier and were never brought in to discuss cost containment measures.

The timing compounds the harm. Florida's plan to cancel premium assistance was announced just days before the end of ACA open enrollment. ADAP enrollees had selected plans approved by the program, often with higher premiums, because ADAP covered the cost. Canceling those subsidies as of March 1 leaves people locked into plans they cannot afford with no ability to change their enrollment.

The abrupt nature of the announcement left people living with HIV scrambling. "This is deeply personal for me—not only do I rely on this coverage to stay virally suppressed, but I also need it to manage other health issues as I age with HIV," Kamaria Laffrey, Co-Executive Director of The SERO Project and a Florida resident, told Positively Aware. "With no warning and no transparency, this feels like a random and unjustified attack on people simply trying to live."

The lack of transparency extends to notification. Some people will not receive termination letters because they did not consent to mailings at home. County health departments, according to testimony, have not received guidance on tracking these clients. The two-month transition window is unrealistic for navigating alternative coverage in a fragmented insurance market, particularly after open enrollment has closed.

Historical Echo

This situation carries echoes of an earlier Florida crisis. In the early 2010s, following the 2008 recession, Florida maintained the largest ADAP waiting list in the nation, with thousands of people waiting months to access medications. Advocates fought to implement cost containment measures and stabilize the program. The state eventually recovered, but the lessons of that period—the importance of transparency, stakeholder engagement, and exploring alternatives before cutting eligibility—appear to have been forgotten.

What Happens Next

The policy implications extend beyond Florida. Because all state ADAPs rely on the same federal funding streams, what happens in one state signals possibilities for others. IAPAC has urged clinicians in states with similar political and fiscal dynamics to engage their representatives proactively. The Save HIV Funding campaign has noted that the Florida changes come alongside broader health system destabilization, including Medicaid cuts and disruptions to federal HIV programs, creating a compounding effect.

At the state level, Chair Jay Trumbull of the Senate Appropriations Committee indicated the issue would likely be negotiated during budget talks. Surgeon General Ladapo acknowledged the situation could become a crisis without intervention and suggested funding approaches that might not be onerous. Yet DOH has not requested additional state funds, despite Florida holding $17 billion in reserves.

What Needs to Happen

The immediate need is a complete halt to the March 1 implementation while finances are fully reviewed and medically sound alternatives are developed. Florida must release transparent budget data, engage stakeholders as required by federal law, and explore the full range of cost-saving measures before resorting to eligibility cuts and formulary restrictions.

For advocates and policymakers watching this unfold, the Florida crisis offers a clear lesson: when states treat HIV programs as budget line items rather than public health infrastructure, people fall out of care, viral suppression declines, and new transmissions occur. The economic argument for maintaining access is well-established: keeping people in care and virally suppressed prevents costly emergency interventions, hospitalizations, and new transmissions that carry their own long-term treatment costs.

Florida has the resources, the federal funding framework, and the clinical expertise to maintain a functional ADAP program. What it lacks, at this moment, is the political will to use them or the moral grounding to not sacrifice the most vulnerable. The cost of that failure will be measured in preventable illness, unnecessary suffering, and setbacks to the national goal of Ending the HIV Epidemic. We cannot let that happen.

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.

Bipartisan Hepatitis C Elimination Plan Presents Critical Lame Duck Opportunity

The presidential election results have created an urgent six-week window for advancing the National Hepatitis C (HCV) Elimination plan. With significant changes to federal healthcare policy likely under the incoming administration, Senators Bill Cassidy (R-LA) and Chris Van Hollen (D-MD) see the lame duck session as a critical opportunity to secure this public health initiative. The legislation's prospects benefit from Senator Cassidy's likely chairmanship of the Senate Health, Education, Labor and Pensions (HELP) Committee in the next Congress, providing potential continuity for implementation oversight despite the broader administrative transition.

The Congressional Budget Office's analysis provides compelling economic justification for swift action. Current estimates indicate between 2.5 and 3.0 million people in the United States are living with HCV, yet only one in three people diagnosed receive treatment within 12 months. This treatment gap resulted in over 14,000 deaths from HCV-related complications in 2020 alone - deaths that could have been prevented with existing curative treatments that demonstrate 95% effectiveness.

The scope of this crisis demands federal intervention. State-level efforts, while demonstrating potential, have proven insufficient for achieving elimination goals. The Cassidy-Van Hollen legislation addresses fundamental barriers beyond medication costs, including provider education, treatment infrastructure, and implementation support. These comprehensive elements, combined with projected long-term savings, position this bill as a rare opportunity for bipartisan achievement in public health policy during a period of political transition.

Economic Analysis Reveals Complex Implementation Challenges

The Congressional Budget Office's June 2024 analysis examines two treatment expansion scenarios among Medicaid enrollees, revealing both significant savings potential and implementation complexities. Under a conservative 10% peak increase in treatment rates, averted healthcare spending would reach $0.7 billion over ten years against $0.5 billion in testing and treatment costs. A more aggressive 100% peak increase could generate $7 billion in averted costs against $4 billion in treatment expenses.

These projections, however, exclude critical implementation costs that could significantly impact program effectiveness. The CBO notes successful expansion requires substantial investment in outreach activities, provider education, and infrastructure development. As treatment rates increase, identifying and engaging people who need treatment becomes progressively more complex and costly - a challenge demonstrated by state-level experiments with subscription models.

Louisiana's program illustrates both the potential and limitations of cost-focused approaches. While reducing projected costs from $760 million to $35 million annually and treating over 1,600 people since 2019, treatment rates have steadily declined. Washington state's experience proves more concerning - treatment rates fell below pre-subscription levels, dropping from 6,649 prescriptions in 2017 to 2,409 in 2021.

The CBO's analysis particularly focuses on Medicaid enrollees, noting this population includes many people at elevated risk for HCV, including people who inject drugs and people who have been involved with the criminal justice system. This targeted approach allows for more precise cost projections while addressing a key demographic in HCV elimination efforts. Notably, the standard 10-year budget window may undervalue long-term benefits, as many health complications from untreated HCV develop over decades.

State experiences reveal important lessons for federal policy design. Washington's planned initiatives - including emergency room screening programs, mobile testing units, and expanded clinic access - remained largely unrealized due to budget constraints. Louisiana's model, despite demonstrating viable cost-control mechanisms, approaches expiration without renewal funding. These outcomes emphasize the need for sustained federal support rather than relying on state-level innovation.

Carceral Settings Reveal Critical Implementation Lessons

Treatment access in prisons provides critical insight into healthcare system readiness for HCV elimination. Despite controlled environments ideal for treatment delivery, systematic failures in carceral settings expose fundamental weaknesses in current approaches. Between 2014-2019, 1,013 people died from HCV-related complications while incarcerated, with the prison death rate reaching 10.0 per 100,000 people by 2019 - more than double the 4.3 per 100,000 rate in the general population.

State-level data reveals how policy choices, rather than medical constraints, drive treatment disparities. Florida reported 7,000 untreated cases in 2021 despite court-ordered treatment expansion. Texas provided treatment to only half of its known HCV-positive population of 11,301-15,563 people. Oklahoma's statistics prove particularly alarming - its prison death rate of 71.9 per 100,000 exceeds its general population rate by more than five times, despite the corrections department requesting nearly $100 million for increased treatment.

Recent investigations have catalyzed improvements in several states' treatment protocols. The FDA's 2024 approval of point-of-care testing technology enables rapid diagnosis and treatment initiation in carceral settings. However, implementation remains inconsistent across state systems, with many maintaining restrictive eligibility criteria that delay treatment until people develop severe liver damage. Texas, for example, still lacks universal screening protocols at intake facilities, leaving countless cases unidentified and untreated.

Legal challenges have prompted some progress. Florida, under court order, treated over 3,000 people between 2018 and 2021. Texas agreed to treat at least 1,200 people annually following a 2020 settlement. However, these court-mandated improvements highlight both the potential for rapid treatment expansion and the need for comprehensive federal policy to ensure consistent care delivery.

These systemic failures in controlled environments underscore broader implementation challenges. If consistent HCV treatment proves difficult in settings with stable populations and established healthcare infrastructure, addressing treatment gaps in the general population requires even more robust support systems and sustained funding commitments.

Implementation Barriers Demand Federal Solutions

Provider engagement represents a critical barrier beyond cost reduction. Despite HCV treatment's relative simplicity compared to managing diabetes, primary care providers often hesitate to initiate treatment. A recent study found that while 94% of specialists prescribe HCV treatment, only 23% of primary care providers do so. Insurance authorization processes exacerbate this reluctance - a single prior authorization request consumes 35 minutes of staff time responding to questions often designed to find denial justifications rather than facilitate treatment.

Geographic barriers particularly impact rural communities. In Louisiana, people in certain parishes travel 50-70 miles to reach HCV treatment providers. This distance barrier disproportionately affects people receiving Medicaid who often lack reliable transportation. Rural provider shortages compound these access issues - many rural clinics lack staff trained in HCV care, while others face chronic understaffing that limits capacity for managing complex prior authorization requirements.

Louisiana's experience highlights how workforce challenges undermine treatment expansion even when medication costs are controlled. The state's STI, HIV, and Hepatitis Program struggles with chronic understaffing due to uncompetitive wages and complex contracting arrangements. These staffing limitations directly impact program effectiveness - outreach activities decrease, patient engagement suffers, and treatment initiation rates decline despite medication availability.

The proposed federal legislation addresses these systemic barriers through targeted investments in:

• Provider education and ongoing support programs

• Infrastructure development for treatment expansion

• Resources for patient engagement and retention

• Support for innovative delivery models including mobile clinics

• Integration with existing healthcare systems and substance use treatment programs

• Workforce development and training initiatives

Early state experiences demonstrate that successful implementation requires simultaneous investment across these domains. Washington's inability to realize planned initiatives - including emergency room screening programs and mobile testing units - despite cost controls highlights the need for comprehensive federal support beyond medication access.

Political Window Demands Swift Advocacy Action

The lame duck session presents a rare confluence of political factors favoring HCV elimination policy. Senator Cassidy's likely ascension to HELP Committee chair in the next Congress, combined with his partnership with Senator Van Hollen, bridges current and future implementation efforts. The CBO's projection that a national elimination program could prevent 24,000 deaths and save $18.1 billion in healthcare costs provides compelling economic justification for swift action.

Recent developments strengthen the case for immediate passage. The FDA's approval of point-of-care testing technology enables rapid diagnosis and treatment initiation, particularly in high-impact settings. Louisiana's subscription model expiration creates urgency for federal intervention to sustain successful state initiatives. These factors, combined with potential changes to federal healthcare policy under the incoming administration, make the current legislative window critical for securing comprehensive HCV elimination policy.

The evidence from state experiences demonstrates both the promise and limitations of isolated initiatives. Federal legislation can build on these lessons, providing comprehensive support for implementation while ensuring sustained political commitment through bipartisan leadership. With only weeks remaining in the current congressional session, advocates must emphasize the unique opportunity this moment presents for achieving significant public health progress.

Conclusion

The opportunity for action is narrow, but the potential impact is immense. The bipartisan momentum behind the National Hepatitis C Elimination plan is a chance to advance public health policy at a time when it is desperately needed. The barriers are clear: implementation challenges, provider hesitancy, and geographic and economic obstacles. Yet the solutions are within reach, and the economic and human benefits are undeniable. Federal intervention can address the systemic gaps that state efforts alone cannot fill, providing comprehensive support to save lives and reduce costs.

However, uncertainty looms over the future of public health funding and support under a second Trump Administration, which looks to bring significant changes to federal healthcare priorities. This adds urgency to the current push for bipartisan action.

As advocates, the time to push is now. The lame duck session represents a rapidly closing window to secure funding, address legislative gaps, and ensure continuity into the next Congress. Swift passage of this legislation would not only demonstrate the power of bipartisan collaboration but also offer a meaningful legacy—one that saves thousands of lives and sets a precedent for effective, equitable public health initiatives in the United States. We cannot afford to let this window close without taking action.