Dismantling of Health Equity Research
A federal judge has ordered the Trump Administration to restore thousands of public health websites and datasets that were abruptly taken offline January 31, 2025. But the ruling, while important, addresses only the most visible aspect of a deeper transformation taking place in American public health research.
The order requires immediate restoration of critical resources like the Centers for Disease Control and Prevention’s (CDC) Youth Risk Behavior Survey, which has tracked adolescent health trends for over 30 years, and AtlasPlus, which provides essential HIV surveillance data. Yet even as some datasets begin to return, fundamental questions remain about their integrity and future usefulness.
New restrictions on research language and funding are reshaping how health disparities can be studied, documented, and addressed. At the National Science Foundation (NSF), grant proposals are now screened for over 70 terms related to equity and inclusion. Similar constraints are being implemented across federal health agencies, controlling not just what data exists, but how it can be analyzed and applied.
We've seen this strategy before. For over 20 years, the Dickey Amendment effectively halted federal research on gun violence - not through outright prohibition, but by using funding restrictions to make the research politically toxic. Today's policies follow the same playbook, using indirect means to reshape what questions researchers can ask and what problems they can study.
The implications for public health - and patient care - could echo for decades to come.
The Architecture of Erasure
The Trump administration's data purge made headlines, but the less visible transformation of research funding mechanisms will have far greater long-term impact. Under new NSF guidelines, grant proposals containing terms like "health disparities," "barriers to care," or "systemic inequities" trigger automatic review. These aren't outright bans - they're strategic barriers designed to make certain types of research more difficult to fund and publish.
Similar restrictions are being implemented across federal health agencies. The National Institutes of Health (NIH) and CDC must now screen research proposals for language that could be interpreted as promoting "gender ideology" or diversity initiatives. Even if researchers secure funding, their ability to frame findings around equity and access faces new constraints.
This reshapes research at every level. A study on maternal health outcomes might be funded if it focuses on individual behaviors, but not if it examines how systemic barriers affect Black maternal mortality. Mental health research could explore "personal resilience" but not structural obstacles to care access. Over time, these restrictions don't just limit what can be studied - they fundamentally alter how health challenges are understood and addressed.
The mechanism is subtle but effective. When researchers know their work will be flagged for examining disparities or structural inequities, many will self-censor to protect their funding. As one CDC scientist told Science magazine, "No federal employee was willing to risk his or her career or the agency's funding to find out" exactly where the new boundaries lie. This kind of suppression doesn't require explicit bans - just the implicit threat of losing resources.
For health systems dependent on federal grants, these restrictions create impossible choices. How can a hospital justify funding for language access programs if they can't document disparities in care? How can public health departments address racial gaps in health outcomes if they can't name those gaps in their grant applications? The system is being redesigned not just to ignore inequity, but to make studying it professionally toxic.
Learning from History: The Dickey Amendment's Legacy
The strategic use of funding restrictions to suppress research isn't new. In 1996, Congress passed the Dickey Amendment, which prohibited the CDC from using funds to "advocate or promote gun control." While this didn't explicitly ban gun violence research, Congress simultaneously slashed CDC's budget by the exact amount previously spent studying firearms - sending an unmistakable message about the political cost of pursuing such research.
The impact was immediate and long-lasting. For over 20 years, federal agencies avoided gun violence research entirely, creating a massive knowledge gap during a period when America's gun violence epidemic dramatically worsened. Even former Representative Jay Dickey, the amendment's author, later expressed regret, stating "I wish I had not been so reactionary."
When Congress finally restored partial funding in 2020, the research community's response was dramatic. The CDC and NIH awarded $149.5 million for firearms research from 2020-2022, leading to a 90% increase in clinical trials and an 86% increase in research publications. But two decades of lost research had already shaped a generation of health policy - or rather, the lack thereof.
Today's restrictions on health equity research follow a similar pattern. While the court has ordered data restoration, new language restrictions and funding mechanisms create powerful disincentives for studying health disparities. Like the Dickey Amendment, these policies don't need to explicitly ban research - they just need to make it politically and professionally risky enough that researchers and institutions avoid it altogether.
The parallels are striking: both policies use indirect means to achieve political goals, both rely on funding threats rather than outright bans, and both are likely to create long-term gaps in critical public health knowledge. However, today's restrictions on health equity research have potentially broader implications - they affect how we understand and address disparities across our entire healthcare system. The knowledge gaps we create today could take decades to fill, leaving us unable to effectively study or address systemic barriers to care.
Beyond Data: How Research Shapes Care
What happens when we can't study disparities in healthcare? The impact cascades through the entire system - from how research is funded, to who is selected for clinical trials, to what guidelines are written, to how providers make decisions, and ultimately, to whether patients receive appropriate care.
Consider HIV surveillance and prevention. The CDC's AtlasPlus tool wasn't just a database - it was the primary mechanism for tracking outbreaks and targeting prevention resources where they were needed most. Without this real-time mapping capability, public health officials lose their ability to respond quickly to emerging hotspots or evaluate which interventions are working. This particularly impacts PrEP outreach in Black and Latino communities, where research has shown targeted, culturally-responsive programs are most effective.
The restrictions on studying maternal health disparities are equally concerning. We know that Black women are three times more likely to die from pregnancy-related causes than white women. But without the ability to study why these deaths occur or evaluate which interventions help, maternal mortality review committees cannot make evidence-based recommendations for prevention. The data might show us who is dying, but research restrictions mean we can't effectively study how to save them.
Language access in healthcare settings presents another critical challenge. When 60% of healthcare workers report witnessing discrimination against non-English speakers, we need research to understand where translation services are most urgently needed and which interpretation models work best. But with terms like "culturally responsive" now flagged in federal grant proposals, who will study these issues? How will hospitals justify funding for language access programs if they can't document their impact?
jThe Youth Risk Behavior Survey's 30-year dataset on adolescent mental health has been essential for developing school-based interventions and suicide prevention strategies. Even if this data is restored, new restrictions on studying LGBTQ+ youth mental health could leave healthcare providers unable to identify which prevention strategies actually work for this high-risk population.
These aren't just academic concerns. When research is restricted, health systems lose their ability to identify problems, evaluate solutions, and implement evidence-based changes. The result? Providers make decisions without complete information, institutions lack data to justify needed programs, and patients - especially those already facing systemic barriers - suffer the consequences.
The Road Ahead
Despite the federal court order to restore health agency websites, serious questions remain about both compliance and data integrity. While some datasets have returned online, many lack essential documentation needed for analysis. The administration's response has been defiant, with Vice President Vance suggesting that "judges aren't allowed to control the executive's legitimate power."
Even if full compliance is achieved, researchers face a transformed landscape across all federal agencies. Under new government-wide directives, research proposals at the NSF, NIH, CDC, and other federal agencies must undergo scrutiny for language related to diversity, equity, inclusion, and accessibility (DEI/A). The impact extends far beyond health research - with similar restrictions at the Departments of Education, Housing and Urban Development, and other federal agencies, our ability to study and address systemic inequities across all social determinants of health is severely compromised.
The impacts extend beyond federal agencies. State health departments and research institutions rely on federal frameworks for standardization and analysis. When these systems are dismantled or restricted, it affects health surveillance and research at every level. Hospitals and clinics dependent on federal grants must align their programs with new guidelines or risk losing funding - even if that means ignoring documented disparities in their communities.
For patients, especially those already facing barriers to care, these changes could have profound consequences that don’t stay in academic journals. They play out in hospitals, emergency rooms, and community health clinics—in real people’s lives. They determine who gets care, who gets ignored, and who is left to suffer without accountability. For people living with HIV—particularly transgender women of color, who already face some of the highest levels of stigma and systemic barriers to care—these policies do more than entrench existing inequities. They manufacture new ones.
This is the reality we face: a healthcare system where evidence of disparities exists but cannot be named, where inequities persist but cannot be studied, and where patients suffer but their experiences cannot be documented in ways that drive change. In this climate, who will take the risk of researching these disparities at all?
Conclusion
These restrictions are not just an attack on data collection—they are an attack on the ability of marginalized communities to fight for their own survival. The ability to name a problem, to document its scope, to prove its harm—this is what drives change in public health. Put another way, it is a deliberate strategy to strip communities of the proof they need to demand better.
The Dickey Amendment's legacy shows us how research censorship can shape public health outcomes for generations. Twenty years of suppressed gun violence research contributed to policies based on politics rather than evidence and led to the worst gun violence epidemic of any developed country. Today's restrictions on health equity research risk creating similar knowledge gaps across every aspect of our healthcare system.
Research doesn't just generate statistics - it provides the evidence needed to develop effective interventions and drive meaningful change. Without the ability to study health disparities or document systemic barriers to care, healthcare providers lose essential tools for improving patient outcomes. When we can no longer collect data showing where problems exist or evaluate which solutions work, we risk perpetuating preventable suffering in communities that already face the greatest challenges accessing care.
The restoration of federal health websites is an important first step. But unless we also protect researchers' ability to study disparities, document inequities, and evaluate solutions, we risk creating gaps in public health knowledge that could take decades to fill. The consequences of these strategic policy decisions will be measured not just in datasets lost, but in human suffering and headstone counts.
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.
Partisan Battles Put Public Health Programs in Jeopardy
Federal support for public health programs stood at a critical inflection point in 2024, with mounting evidence that political polarization threatens to undermine decades of progress in disease prevention and healthcare access. The O'Neill Institute's analysis of the HIV response highlights a broader pattern affecting America's entire public health infrastructure: an erosion of bipartisan cooperation is creating tangible negative impacts on healthcare delivery and outcomes.
Recent developments illustrate this crisis. The President's Emergency Plan for AIDS Relief (PEPFAR), historically celebrated as one of the most successful public health initiatives in U.S. history, received only a one-year reauthorization in March 2024 instead of its traditional five-year renewal. This shortened timeframe introduces uncertainty for partner countries and threatens program stability. Similarly, Tennessee's rejection of $8.3 million in Centers for Disease Control and Prevention (CDC) HIV prevention funding exemplifies how state-level political decisions can directly impact public health services and infrastructure.
The implementation of the Inflation Reduction Act (IRA), while advancing certain healthcare affordability goals, has created unintended consequences for safety-net providers. Changes to drug pricing and reimbursement structures are affecting 340B program revenues that support critical healthcare services for vulnerable populations.
These challenges emerge against a backdrop of chronic underfunding, with the Prevention and Public Health Fund losing $12.95 billion between FY 2013-2029. This combination of political polarization and resource constraints threatens to create long-lasting negative impacts on healthcare access and population health outcomes, demanding a renewed commitment to depoliticizing essential public health infrastructure and services.
An Erosion of Bipartisan Support
The deterioration of bipartisan cooperation in public health policy represents a significant shift from historical norms that prioritized health outcomes over political ideology. PEPFAR exemplifies this change. Created under President George W. Bush's administration in 2003, PEPFAR has saved over 25 million lives and currently provides HIV prevention and treatment services to millions across 55 countries. Despite this documented success, the program's 2024 reauthorization became entangled in partisan debates over abortion rights.
"I'm disappointed," Rep. Michael McCaul (R-Texas) stated. "Honestly, I was looking forward to marking up a five-year reauthorization, and now I'm in this abortion debate." McCaul added that "a lot of the Freedom Caucus guys would not want to give aid to Africa." The inclusion of abortion rights in the reauthorization debate reflects ongoing polarization within Congress, which has hindered the passage of traditionally bipartisan public health initiatives. This opposition led to an unprecedented short-term reauthorization through March 2025, creating instability for partner countries and threatening program sustainability.
At the state level, Tennessee's decision to reject $8.3 million in CDC HIV prevention funding reflects similar political calculations overshadowing public health considerations. The state's choice to forgo federal support impacts disease surveillance, testing services, and prevention programs that serve people living with HIV and those at risk of acquiring HIV. This rejection of federal funding occurred despite Tennessee ranking 7th among U.S. states for new HIV diagnoses in 2022.
Such decisions mark a stark departure from historical bipartisan support for public health initiatives. Previous health emergencies, from polio to the early HIV epidemic, generated collaborative responses across party lines. The Ryan White HIV/AIDS Program, established in 1990, exemplified this approach, receiving consistent bipartisan support for reauthorization until 2009, its last reauthorization.
The shift away from bipartisan cooperation extends beyond specific programs to affect broader global health initiatives. PEPFAR's instability impacts America's global health leadership position and threatens the progress made in HIV prevention and treatment worldwide. The program's uncertain future affects procurement planning, workforce retention, and long-term strategy development in partner countries, potentially reversing decades of progress in global health security.
Funding Crisis and Infrastructure Impacts
The public health funding landscape reveals a pattern of chronic underinvestment that threatens core infrastructure capabilities. The Prevention and Public Health Fund (PPHF), established under Section 4002 of the Patient Protection and Affordable Care Act of 2010 (ACA) to provide sustained investment in prevention and public health programs, has lost $12.95 billion between FY 2013-2029 through repeated cuts and diversions. These reductions represent approximately one-third of the fund's originally allocated $33 billion, significantly limiting its ability to support essential public health services.
The CDC faces mounting infrastructure challenges due to stagnant funding. While COVID-19 response funds provided temporary relief, these emergency appropriations have been largely obligated or rescinded. The Fiscal Responsibility Act of 2023 rescinded approximately $13.2 billion in emergency response funding from public health agencies, including the CDC, creating a significant funding cliff. Programs facing severe reductions include the Advanced Molecular Detection program, which will revert to its annual base appropriation of $40 million from a one-time supplemental of $1.7 billion, severely limiting disease surveillance capabilities.
State-level impacts manifest in critical staffing shortages and outdated systems. Public health experts estimate that state and local health departments need to increase their workforce by nearly 80%, requiring an additional 26,000 full-time positions at the state level and 54,000 at the local level. The National Wastewater Surveillance System, crucial for early detection of disease outbreaks, faces reduction from $500 million in supplemental funding to a proposed $20 million in FY 2025, threatening its operational viability.
These funding constraints create cascading effects across the public health system. The Public Health Infrastructure Grant program, which has awarded $4.35 billion to strengthen foundational capabilities across 107 state, territorial, and local health departments, expires in FY 2027 without a clear sustainability plan. Similarly, the Bridge Access Program, ensuring COVID-19 vaccine access for 25-30 million adults without health insurance, ended in August 2024, leaving millions without access to updated vaccines. These funding cuts have significantly curtailed prevention services, limiting the CDC's ability to maintain disease surveillance systems and provide timely interventions.
Healthcare Access and Safety Net Impacts
The implementation of the Inflation Reduction Act (IRA) has created unintended consequences for safety-net providers, particularly through its impact on the 340B Drug Pricing Program. Research examining 340B-eligible hospitals reveals concerning trends in charity care provision, with only 9 out of 38 hospitals (23.7%) reporting increases in charity care as a percentage of annual revenues after gaining 340B eligibility. This decline in charity care occurs despite significant revenue increases from 340B participation, raising questions about program effectiveness in expanding healthcare access for vulnerable populations.
Data indicates that hospital participation in the 340B program correlates with substantial revenue growth but diminishing charity care services. The average decrease in charity care provision as a percentage of annual revenues was 14.79% across examined hospitals. This trend is particularly concerning in states with high poverty rates. For example, three West Virginia hospitals—Cabell-Huntington Hospital, Pleasant Valley Hospitals, and Charleston Area Medical Center—reported some of the largest decreases in charity care despite serving a state where 28.1% of people earn less than 150% of the Federal Poverty Level.
Federally Qualified Health Centers (FQHCs) face unique challenges under these changing dynamics. Unlike hospitals, FQHCs must reinvest every 340B dollar earned into patient care or operations to maximize access. However, the IRA's implementation of Medicare drug price negotiations and insulin cost caps affects the rebate calculations that support these reinvestments, potentially reducing available resources for patient care.
Medication access challenges extend beyond 340B implications. Pharmacy Benefit Managers (PBMs) have responded to IRA provisions by adjusting formularies, sometimes excluding medications that previously generated significant rebates. This particularly impacts insulin coverage, where certain products have been dropped from formularies despite the IRA's intent to improve insulin affordability. These decisions create new barriers to medication access for people who rely on safety-net providers for healthcare services.
Public Health Consequences
The convergence of political polarization and funding constraints creates measurable negative impacts on disease prevention efforts, weakening the capacity of public health systems to effectively address emerging and ongoing health threats. Data from the CDC shows that despite a 12% decrease in new HIV diagnoses over the past five years, driven largely by a 30% reduction among young people, progress in reducing new infections has stalled. The lack of sufficient funding, compounded by political challenges, has limited the capacity to expand prevention services, enhance outreach, and maintain necessary treatment programs. The 31,800 new HIV diagnoses reported in 2022 highlight how flat funding and political barriers have hindered further advances. These barriers prevent scaling up successful prevention strategies, limit access to innovative treatments, and constrain efforts to address disparities in vulnerable communities. Notably, significant disparities persist, particularly among gay men across all racial and ethnic groups, transgender women, Black people, and Latino people. These populations continue to face systemic barriers to healthcare access, stigma, and a lack of targeted resources, all of which contribute to ongoing inequities in health outcomes.
Vaccine hesitancy, intensified by political division, threatens population health outcomes. The CDC reports that routine vaccination rates for kindergarten-age children have not returned to pre-pandemic levels, while exemption claims have increased. Nearly three-quarters of states failed to meet the federal target vaccination rate of 95% for measles, mumps, and rubella during the 2022-23 school year, increasing outbreak risks.
Health disparities are exacerbated when political decisions override public health considerations. Tennessee's rejection of CDC funding exemplifies how political choices can disproportionately impact communities already experiencing health inequities by reducing access to essential prevention and treatment services. Such decisions particularly affect regions where HIV rates among transgender women increased by 25%, and Latino gay men now account for 39% of all HIV diagnoses among men who have sex with men.
Community health center sustainability faces mounting challenges as funding mechanisms become increasingly unstable. The expiration of COVID-19 emergency funding, combined with uncertain 340B revenues and growing workforce shortages, threatens these essential safety-net providers. Public health experts estimate an 80% workforce gap in state and local health departments, hampering their ability to deliver essential services and respond to emerging health threats.
Uncertain Future Under New Administration
With Donald Trump’s return to the White House, the future of the nation's public health programs remains uncertain. The president-elect’s stance on health policy has historically emphasized deregulation, work requirements, and reductions in safety net programs, and early indications suggest a continuation of these priorities.
The new administration is poised to bring changes that could scale back Medicaid, reduce the Affordable Care Act’s consumer protections, and restrict reproductive health access—all of which have the potential to exacerbate existing health inequities and widen the gap in healthcare access for marginalized populations. Furthermore, the inclusion of vaccine skeptic Robert F. Kennedy Jr. among Trump’s advisors could undermine public confidence in vaccination campaigns and other science-backed public health interventions.
Although Trump has not explicitly targeted programs like PEPFAR, the Ryan White Program, or other core public health initiatives, the broader agenda of cutting federal funding and shifting health policy decisions to the state level raises significant concerns. These shifts could ultimately weaken the country’s safety net programs, leading to an increase in uninsured rates and preventable health disparities.
The reemergence of a more partisan approach to healthcare policy, especially one with a focus on cost-cutting and minimal regulatory oversight, risks destabilizing public health progress made over the last several decades. Public health stakeholders—ranging from healthcare providers to patient advocates—will need to prepare for a period of heightened uncertainty and potentially significant changes to the public health landscape.
The coming months will likely determine how public health priorities and programs evolve in this new political era. Advocacy groups, healthcare professionals, and policymakers must remain vigilant and ready to respond as the Trump administration shapes its healthcare policy agenda, one that could either sustain or significantly alter the course of public health in the United States. Such shifts threaten to undermine the nation’s public health stability, with repercussions for healthcare costs, access, and the ability to prevent and control emerging health threats.