Leaked HHS Budget: Critical HIV Services Face Deep Cuts
A recently leaked budget document from the Department of Health and Human Services (HHS) has revealed the Trump Administration's plans for sweeping cuts that would fundamentally reshape federal health programs. The 64-page "pre-decisional" budget proposal, first reported by The Washington Post, outlines a severe reduction in HHS discretionary spending from $121 billion to approximately $80 billion—a 33% cut. This proposal provides the first comprehensive look at the administration's vision for restructuring the nation's health infrastructure, including the creation of a new Administration for a Healthy America (AHA) while eliminating or consolidating many established agencies that form the backbone of our public health system. The proposed changes would profoundly impact HIV/AIDS programs, viral hepatitis services, substance use disorder treatment, and access to care for vulnerable populations, potentially reversing decades of progress in public health.
The Scale of Proposed Cuts
The magnitude of cuts outlined in the leaked budget document would fundamentally transform the federal health infrastructure in ways not seen in decades. The National Institutes of Health (NIH), America's premier biomedical research institution, would see its budget slashed by 42%—from $47 billion to just $27 billion. This dramatic reduction would be accompanied by a plan to reorganize NIH's 27 institutes and centers into just eight, eliminating some entirely while consolidating others into broader entities with less specialized focus.
Similarly devastating, the Centers for Disease Control and Prevention (CDC) faces a proposed 44% budget reduction, from $9.2 billion to approximately $5.2 billion. The document indicates the CDC would be refocused primarily on "emerging and infectious disease surveillance, outbreak investigations, preparedness and response, and maintaining the Nation's public health infrastructure."
Even more concerning, several agencies would be eliminated entirely as independent entities, including the Health Resources and Services Administration (HRSA), the Substance Abuse and Mental Health Services Administration (SAMHSA), the Administration for Strategic Preparedness and Response (ASPR), and the Administration for Community Living (ACL). While some programs from these agencies would transfer to the proposed Administration for a Healthy America (AHA), many would be eliminated outright. As the leaked document itself states: "Many difficult decisions were necessary to reach the funding level provided in this passback."
Impact on HIV/AIDS Infrastructure
The proposed budget would effectively dismantle decades of federal HIV prevention and treatment infrastructure, threatening to reverse significant progress made toward ending the epidemic. Most alarming is the complete elimination of the CDC's Division of HIV Prevention (DHP), which has been the cornerstone of the nation's HIV prevention efforts. According to POZ, the division passes 89% of its funding directly to state and local HIV programs, with states like Alabama and Mississippi depending on it for up to 100% of their HIV prevention efforts.
The budget also eliminates the Ending the HIV Epidemic (EHE) initiative, which was launched during Trump's first administration and has produced a 21% reduction in new HIV transmissions within targeted jurisdictions. This initiative represented a rare bipartisan commitment to addressing the HIV epidemic through increased testing, prevention, and treatment resources.
The Ryan White HIV/AIDS Program, which provides essential care and treatment to over 550,000 people living with HIV who are uninsured or underinsured, would see significant cuts. The KFF analysis reveals that while core funding for grants to cities, states, and the AIDS Drug Assistance Program (ADAP) would be maintained, the budget eliminates support for dental services, AIDS Education and Training Centers, and demonstration programs.
Additionally, the Minority AIDS Initiative, which addresses the disproportionate impact of HIV on racial and ethnic minorities, would be eliminated entirely. This comes at a time when Black and Latino communities continue to face disproportionate HIV rates and could worsen existing health disparities.
"The scale of what is being lost is staggering," POZ reports. "According to recent analysis from amfAR, a 100% reduction in DHP funding will lead to 143,486 new HIV infections by 2030, 14,676 additional AIDS related deaths, and $60.3 billion in additional lifetime health care costs."
The proposal would move remaining HIV/AIDS programs under the new Administration for a Healthy America with reduced funding and an unclear structure, raising serious questions about program coordination and effectiveness going forward.
Viral Hepatitis, STIs, and Related Programs
The leaked budget proposal takes aim at viral hepatitis, sexually transmitted infections (STIs), and tuberculosis programs by consolidating their funding into a single, smaller grant program. According to POZ, "a proposal in the new budget to turn other CDC funding for viral hepatitis, STDs, and TB into block grants masks devastating funding losses as 'flexibility to address local needs.'" In reality, this consolidation would reduce overall funding by approximately $500 million, severely limiting the capacity to prevent and respond to outbreaks of these conditions.
Particularly concerning is the elimination of CDC's Global Health Center and the agency's critical STD laboratory, which MedPage Today confirms was shuttered during the recent mass layoffs. These cuts would dismantle essential testing infrastructure at a time when sexually transmitted infections are at record highs nationwide. The consolidation approach significantly weakens the specialized responses needed for these distinct but interconnected public health challenges, potentially allowing localized outbreaks to develop into broader public health crises without the targeted interventions currently in place.
Mental Health and Substance Use Disorder Services
The proposed budget calls for the complete elimination of the Substance Abuse and Mental Health Services Administration (SAMHSA), the federal agency dedicated to addressing mental health and substance use conditions. The impact of this elimination would be compounded by severe cuts to services: Mental Health Services would see a 25% reduction, Substance Use Treatment funding would drop by approximately 13%, and most alarmingly, Substance Use Prevention would be nearly eliminated with a staggering 92% cut.
The proposal would eliminate 17 mental health programs and 23 substance use prevention and treatment programs. Harm reduction services, which are critical in preventing overdose deaths and the transmission of infectious diseases such as hepatitis C virus (HCV), are particularly targeted for cuts. The proposed budget would also end the Certified Community Behavioral Health Clinic program, which provides 24-hour crisis services regardless of patients' ability to pay.
As STAT News reports, "We continue to face a mental health and addictions crisis, and the need for effective federal leadership is more important than ever." These cuts come at a time when more than one in four people will experience a mental health or substance use problem, and over 209,000 Americans die annually from alcohol, suicide, and drug overdoses.
Rural Health and Access to Care
Rural communities would bear a disproportionate burden from the proposed budget cuts through the elimination of numerous programs specifically designed to support rural healthcare infrastructure. As detailed in the leaked document, the budget would eliminate State Offices of Rural Health, which coordinate statewide efforts to improve healthcare delivery in rural areas. The Washington Post reports that rural hospital flexibility grants, rural residency development programs, and at-risk rural hospitals program grants would all face elimination or significant cuts.
Additionally, critical telehealth funding would be eliminated at a time when remote healthcare services have become essential lifelines for rural populations. These programs have historically enjoyed strong bipartisan support due to their critical role in maintaining healthcare access for the approximately 60 million Americans living in rural areas.
Alan Morgan, CEO of the National Rural Health Association said, "Those are essential to ensuring access to care for rural Americans and critical to keeping rural hospitals open. If that would come to fruition it would be absolute shocking news, because these programs have had such bipartisan support."
The Advisory Board notes that these cuts would exacerbate the already fragile state of rural healthcare, where over 150 rural hospitals have closed since 2010, leaving many communities without access to emergency and essential medical services.
340B Program and Healthcare Costs
Amid the sweeping cuts to safety-net programs, the leaked budget also proposes significant changes to the 340B Drug Pricing Program, which provides discounted medications to hospitals and clinics serving vulnerable populations. HFES reports that the administration is "seeking new authority to regulate 'all aspects of the 340B Program'" and would require covered entities to report on their use of 340B savings.
According to Health Exec, the proposal would require facilities to "charge no more than the actual cost of acquiring and dispensing drugs to low-income patients." While greater transparency might be beneficial, these changes—combined with cuts to other safety-net programs—could restrict access to affordable medications for people living with HIV, hepatitis, and other chronic conditions who rely on safety-net providers participating in the 340B program.
Conclusion
Unlike during Trump's first term when Congress often rejected deep cuts to health agencies, the current political landscape offers much less hope for meaningful congressional pushback. Under the GOP-controlled Congress, recent reports show Republicans largely falling in line behind Trump's initiatives, with Reuters reporting that the president is "testing the U.S. Constitution's system of checks and balances" while congressional Republicans demonstrate "staunch support." This legislative acquiescence has extended to health policy, with little effective opposition to the administration's sweeping restructuring of federal health agencies.
Further complicating advocacy efforts, HHS Secretary Robert F. Kennedy Jr. has eliminated a key avenue for public input by rescinding a 54-year-old policy that required public comment periods for rules on grants, benefits, and other health programs. This change, which came despite Kennedy's promises of "radical transparency," allows HHS to implement major policy changes without seeking feedback from affected communities, healthcare providers, or advocacy organizations.
In this environment, traditional advocacy approaches must evolve. In the absence of congressional intervention, our energy may be better spent:
Forming coalitions between patient groups, healthcare providers, private business, and public health organizations to amplify impact
Considering support for legal challenges to health policy changes implemented without adequate review
Carefully documenting and publicizing the real-world impacts of cuts to HIV services and other critical programs
Engaging with state officials who may have flexibility in implementing federal changes
Making use of remaining public comment opportunities when available, with a focus on evidence-based arguments
The proposed dismantling of federal HIV infrastructure represents an existential threat to decades of progress. While the political headwinds are strong, our collective advocacy efforts remain essential to protecting the health services that millions of Americans depend on.
Are Federal Spending Cuts Endangering America's Most Vulnerable
CANN continues to monitor the restructuring of federal health agencies and the impacts of funding cuts on public health programs nationwide. This article is part of our developing coverage.
Two infants in Louisiana recently died from whooping cough—the first such deaths in the state since 2018. This tragedy comes amid a twelve-fold increase in whooping cough cases, from just 11 in 2023 to 149 in 2024, with 110 already recorded in the first three months of 2025 alone. These deaths occurred shortly after a February 13th decision by the Louisiana Surgeon General to end all vaccine promotion and outreach events statewide—the same day Robert F. Kennedy Jr. was confirmed to lead the U.S. Department of Health and Human Services (HHS).
These preventable deaths are the direct consequence of an intensifying assault on America's public health infrastructure, as the Trump Administration executes an $11.4 billion clawback of COVID relief funds from state health departments while simultaneously gutting federal health agencies through mass layoffs. The consequences of these dangerous, ideologically-driven policies are unfolding across the country and, as public health experts predicted, people are dying.
A System Already at the Breaking Point
Before these cuts, state and local health departments were already operating in a perpetual state of crisis. Years of chronic underfunding and staffing shortages had left America's public health system dangerously fragile and ill-equipped to handle emerging health threats.
In Utah, 70-90% of the state's public health funding comes from the federal government. Local health departments, particularly in rural and underserved areas, often function with minimal staff and resources, stretching their capacity to its limits to fulfill basic functions.
"This is going to be a major dent in our ability to be prepared for whatever new threat might come," warned Connecticut Health Commissioner Manisha Juthani. Philip Huang, Dallas County Health director, pointed out that even modest cuts can have outsized impacts on smaller departments: "It may not be in the millions, but these are really small health departments that have very few staff, very little capacity. And then if you hit those, then it starts to really impact their ability to respond."
The $11.4 Billion Clawback: A Devastating Blow
On March 25, 2025, the Centers for Disease Control and Prevention (CDC) announced it was pulling back $11.4 billion in COVID-19 funding previously allocated to state and local health departments across the nation. The announcement came without warning, leaving health officials scrambling to assess impacts on critical programs and staff.
The administration's justification was blunt and misleading: "The COVID-19 pandemic is over, and HHS will no longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago," said HHS Director of Communications Andrew Nixon in a statement to NBC News. This characterization fundamentally misrepresents how these funds were being used.
While the grants were initially authorized for pandemic response, they had evolved to support core public health functions: tracking infectious disease outbreaks, monitoring wastewater for early detection of disease spread, supporting community health workers in underserved areas, addressing health disparities, and maintaining vaccination programs for multiple preventable diseases.
The financial impact on states is severe: Texas faces the loss of $877 million, Florida $482 million, and North Carolina $100 million in cuts affecting immunization efforts and infectious disease monitoring. In Kentucky, $34 million in already-committed funds are now inaccessible, despite previous federal guarantees those funds would be available through March 2026.
Minnesota's Department of Health has issued layoff notices to 170 workers and rescinded offers to 20 new hires in response to losing $220 million in federal funding. This has resulted in slower responses to infectious disease outbreaks with fewer lab technicians and public health investigators.
The HHS Bloodbath: Dismantling Decades of Expertise
On April 1, 2025, HHS began executing the largest mass layoff in its history—eliminating 20,000 positions (10,000 through direct layoffs and another 10,000 through early retirement and voluntary separation offers).
The manner of these dismissals was particularly callous. According to the Associated Press, "Some staffers began getting termination notices in their work inboxes at 5 a.m., while others found out their jobs had been eliminated after standing in long lines outside offices to see if their badges still worked." Some workers who received layoff notices were directed to contact an EEO official who had died months earlier.
As the layoffs commenced, HHS Secretary Robert F. Kennedy Jr. tweeted triumphantly, "The revolution begins today!" When confronted by a fired HHS employee asking about the impact on people with disabilities, Senator Jim Banks responded, "You probably deserved it," then called the worker "a clown" as elevator doors closed.
Critical CDC and HIV Programs Decimated
MedPage Today reports that the hardest-hit areas of the CDC included centers focused on injuries, global health, chronic disease prevention, and infectious diseases including HIV, hepatitis, STIs, and tuberculosis. Directors of at least three major CDC centers were reassigned or placed on administrative leave.
The cuts strategically targeted offices serving vulnerable populations. The Administration for Community Living, which coordinates programs like Meals on Wheels, saw approximately 40% of its staff eliminated. The Office of Minority Health was largely dismantled, and entire offices were eliminated, including the Office of Science and Data Policy and Freedom of Information Act offices at the CDC.
The HIV+Hepatitis Policy Institute's Carl Schmid warned that the elimination of HHS's Office of Infectious Disease and HIV Policy would have lasting consequences:
"The expertise of the staff, along with their decades of leadership, has now been destroyed and cannot be replaced. We will feel the impacts of these decisions for years to come and it will certainly, sadly, translate into an increase in new HIV infections and higher medical costs."
These cuts follow the forced resignation of Dr. Peter Marks, the FDA's top vaccine safety official, who had resisted Kennedy's vaccine misinformation. In his departure letter, Marks wrote that "truth and transparency are not desired by the secretary, but rather he wishes subservient confirmation of his misinformation and lies."
Louisiana: Where Anti-Vaccine Policy Has Already Claimed Lives
Louisiana offers a foreboding preview of what happens when ideology trumps evidence-based public health practice. On February 13, 2025, Louisiana Surgeon General Dr. Ralph Abraham issued a directive ending all vaccine promotion and outreach events by the state health department.
Jennifer Herricks of Louisiana Families for Vaccines warned: "And the consequences of lower vaccination rates? More illness. More hospitalizations. More deaths." Tragically, her prediction has already come true for two Louisiana families who lost their babies to a vaccine preventable disease.
The memo came despite Louisiana experiencing its worst whooping cough outbreak in over a decade. Manning Family Children's Hospital in New Orleans has been admitting 1-2 children weekly for whooping cough, with cases statewide skyrocketing from 11 in 2023 to 149 in 2024.
By February 20—less than a week after the vaccine promotion ban—news outlets reported the first infant death from whooping cough. A second soon followed. Yet the health department did not officially confirm these deaths until March 28, more than a month later. In that belated announcement, Abraham did acknowledge that "vaccines are the best way to protect against infections, especially for babies," but this came after the vaccine preventable deaths had already occurred.
Vaccine Science Under Attack
During an American Public Health Association panel on vaccine science, Dr. Paul Offit of the Children's Hospital of Philadelphia compared the dismantling of public health agencies to an invasion "by a foreign nation" whose interest "is to destroy public health agencies." He emphasized that the HHS cuts will cause a significant loss of institutional knowledge vital for future public health emergencies.
Offit noted that NIH-funded research on mRNA technology "probably saved roughly 3 million lives" during the COVID pandemic. The dismantling of vaccine expertise comes amid a resurgence of vaccine-preventable diseases, with two deaths already reported in the measles outbreak affecting several states.
Public Health Leaders Unite in Opposition
Over 100 of the nation's most respected public health leaders—including former HHS Secretaries, CDC Directors, and state health officials—have issued an open letter urging Congress to halt the Trump administration's dismantling of public health infrastructure.
The letter, organized by For Our Health, warns: "This is a moment of profound danger for public health. The dismantling of CDC is not just an internal agency matter—it will leave states, communities and American families without the support they need to protect themselves from disease, misinformation and chronic illness."
Broader Impacts: New Threats for PLWH and Vulnerable Populations
For people living with HIV and other immunocompromised conditions, the dismantling of public health infrastructure creates particularly dangerous vulnerabilities. The elimination of the HHS Office of Infectious Disease and HIV Policy removes coordination for HIV programs across federal agencies.
With the Health Resources and Services Administration (HRSA) facing staffing reductions, coordination of HIV prevention and treatment programs could be compromised. These structural changes risk undermining the health infrastructure that people living with HIV depend on for essential care.
The closure of wastewater surveillance programs eliminates a key early warning system for HIV cluster detection, while the decimation of health equity programs removes vital supports for marginalized communities disproportionately affected by HIV.
Breaking: Judge Blocks Funding Cuts as HHS Backtracks
In a significant development, U.S. District Judge Mary McElroy announced on April 3 she would issue a temporary restraining order blocking the Trump administration's $11.4 billion funding cuts to state health departments. During the hearing, McElroy stated that the 23 states and District of Columbia that filed the lawsuit "make a case, a strong case, for the fact that they will succeed on the merits."
This judicial intervention represents a critical, if temporary, reprieve for state health departments already reeling from layoffs and program cancellations. New York Attorney General Letitia James responded to the ruling by tweeting: "We're going to continue our lawsuit and fight to ensure states can provide the medical services Americans need."
Simultaneously, Secretary Kennedy has begun backtracking on the sweeping cuts, claiming it was "always the plan" to reinstate certain employees and programs after terminating them. Kennedy acknowledged that "personnel that should not have been cut were cut" and said some would be reinstated, including a CDC program that monitors blood lead levels in children.
This claim contradicts the chaotic, across-the-board nature of the cuts that eliminated entire divisions and critical public health functions. Kennedy's assertion that "we're going to do 80% cuts, but 20% of those are going to have to be reinstalled, because we'll make mistakes" reveals a reckless approach to public health administration where critical programs and expertise are eliminated first, with potential consequences evaluated only after damage is done.
These developments suggest mounting pressure against the administration's public health cuts is beginning to have an effect, reinforcing the importance of continued advocacy and legal challenges.
The Fight to Preserve Public Health: What Comes Next
The combined impact of the COVID funding clawback and HHS restructuring represents an unprecedented assault on America's public health infrastructure. Twenty-three state attorneys general have already filed legal challenges against the funding cuts, arguing they exceed executive authority and violate appropriations law.
Recent election results suggest the administration's approach to public health may be backfiring politically. In Wisconsin's Supreme Court race, liberal candidate Susan Crawford defeated her conservative opponent despite record spending by DOGE architect Elon Musk. Meanwhile, special elections in Florida districts that Trump won by 30 points saw Republican margins cut in half.
This political landscape creates an opening for effective advocacy. Congressional representatives, particularly those in vulnerable districts, may be increasingly receptive to constituent concerns about public health funding. The moment calls for coordinated action: contact your representatives to demand oversight hearings and funding restoration; document and report public health impacts in your community; and support organizations working to preserve essential health services.
The preventable deaths we're witnessing are the predictable consequence of policies that prioritize ideology over scientific evidence and public health. Our collective advocacy can make the difference between a temporary setback and lasting damage to our nation's public health infrastructure.
Flying Blind: Public Health Without Population Data
On January 31, 2025, federal health agencies began removing thousands of webpages and datasets from public access in response to executive orders from the Trump Administration targeting "gender ideology" and diversity, equity, and inclusion initiatives. By February 1, over 8,000 federal webpages and 450 government domains had gone dark, including critical public health resources from the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and Food and Drug Administration (FDA).
Immunologist and microbiologist Dr. Andrea Love, Executive Director of the American Lyme Disease Foundation, minced no words regarding the executive actions: "If you weren't clear: a President ordering a Federal health and disease agency to delete pages on its website is a public health crisis." The scope of removed content spans decades of population health data, from the 40-year-old Youth Risk Behavior Surveillance System to current HIV surveillance statistics. Many pages that have returned now display banners warning of further modifications, creating uncertainty around the future availability and integrity of federal health data.
This sudden removal of public health information echoes similar challenges faced during the early COVID-19 response, when limited access to comprehensive population data hampered the ability to identify and address emerging health disparities. As we examine the current situation, the key question becomes: How can evidence-based public health function without access to the very data that drives decision-making and ensures equitable health outcomes?
Scale of Impact
The removal of federal health datasets represents an unprecedented disruption to public health surveillance and research capabilities. According to KFF analysis, key resources taken offline include:
The CDC's Youth Risk Behavior Surveillance System, which for 40 years has tracked critical health indicators among high school students. This dataset has been instrumental in identifying emerging health crises, including the rise in youth mental health challenges and substance use patterns.
CDC's AtlasPlus tool, containing nearly 20 years of surveillance data for HIV, viral hepatitis, sexually transmitted infections, and tuberculosis, is no longer accessible. This platform has been essential for tracking disease trends and designing targeted prevention strategies.
The Social Vulnerability Index and Environmental Justice Index - critical tools for identifying communities at heightened risk during public health emergencies and environmental disasters - have also been removed. These resources help public health officials allocate resources effectively during crises and natural disasters.
Public health researchers report that the loss of demographic data collection and analysis capabilities particularly impacts their ability to identify and address health disparities.
As Dr. Jennifer Nuzzo, director of the Pandemic Center at Brown University School of Public Health notes, "Health equity is basically all of public health."
The ability to analyze health outcomes across different populations is fundamental to developing effective interventions and ensuring equitable access to care.
The CDC's healthcare provider resources have also been affected, including treatment guidelines for sexually transmitted infections and HIV prevention protocols. This loss of clinical guidance materials creates immediate challenges for healthcare providers working to deliver evidence-based care.
Beyond individual datasets, this wholesale removal of public health information disrupts the interconnected nature of federal health data systems. Many of these resources inform each other, creating compounding effects when multiple datasets become unavailable simultaneously.
Research and Care Delivery Impact
The removal of federal health data creates immediate challenges for both research and clinical care delivery. The Infectious Diseases Society of America (IDSA) warned that removing HIV and LGBTQ+ related resources from CDC websites "creates a dangerous gap in scientific information and data to monitor and respond to disease outbreaks."
This impact is particularly acute in STI prevention and treatment. Including gender and demographic data in research helps identify populations at elevated risk for infections like syphilis, which has reached its highest levels in 50 years. Without this data, developing targeted interventions becomes significantly more challenging.
For HIV prevention specifically, the loss of CDC's AtlasPlus tool removes access to critical surveillance data that guides prevention and treatment strategies. Healthcare providers report that missing CDC clinical guidance on HIV testing and PrEP prescribing creates uncertainty in delivering evidence-based care.
David Harvey, executive director of the National Coalition of STD Directors, emphasizes the immediate clinical impact: "Doctors in every community in America rely on the STI treatment guidelines to know what tests to run, to know what antibiotic will work on which infection, and how to avoid worsening antibiotic resistance. These are the guidelines for treating congenital syphilis, for preventing HIV from spreading, and for keeping regular people healthy every time they go to the doctor."
The loss of demographic data collection capabilities also threatens to undermine decades of progress in understanding and addressing health disparities. Research requiring analysis of health outcomes across different populations may face delays or compromised results without access to comprehensive federal datasets.
This disruption extends beyond immediate clinical care to impact long-term research projects and clinical trials. FDA guidance documents about ensuring diverse representation in clinical studies are no longer accessible, potentially affecting the development of new treatments and their applicability across different populations.
Historical Context and Implications
The current removal of federal health data follows concerning precedent. During the COVID-19 pandemic, similar actions to restrict access to public health data hampered effective response. In July 2020, hospital COVID-19 data reporting was moved from CDC control to a private contractor, leading to significant gaps in data access and accuracy that impeded pandemic response.
As Harvard epidemiologist Nancy Krieger notes, "There's been a history in this country recently of trying to make data disappear, as if that makes problems disappear... But the problems don't disappear, and the suffering gets worse."
This observation proved accurate during COVID-19, when limited access to comprehensive demographic data delayed recognition of disparate impacts on communities of color.
Early COVID-19 response efforts were hampered by insufficient data about how the virus affected different populations. This information gap contributed to delayed identification of emerging hotspots and slowed targeted intervention efforts. The result was preventable disparities in COVID-19 outcomes, particularly among Black, Hispanic, and Native American communities.
Today's wholesale removal of federal health data risks recreating similar blind spots across multiple public health challenges. Without demographic data to identify disparities and guide interventions, public health officials lose the ability to effectively target resources and measure outcomes. As Dr. Jennifer Nuzzo emphasizes, this data is "really important for us to answer the essential question of public health, which is, Who is being affected and how do we best target our limited resources?"
Legal Response and Policy Challenges
On February 4, 2025, Doctors for America filed suit against multiple federal agencies including the Office of Personnel Management (OPM), Centers for Disease Control and Prevention (CDC), Food and Drug Administration (FDA), and Department of Health and Human Services (HHS).
The lawsuit challenges two key actions: OPM's directive requiring agencies to remove webpages and datasets, and the subsequent removal of critical health information by CDC, FDA, and HHS. The complaint argues these actions violated both the Administrative Procedure Act and the Paperwork Reduction Act of 1995 (PRA).
Under the PRA, federal agencies must "ensure that the public has timely and equitable access to the agency's public information" and "provide adequate notice when initiating, substantially modifying, or terminating significant information dissemination products." The complaint alleges agencies failed to provide required notice before removing vital health information and datasets.
The legal challenge emphasizes the fundamental role these datasets play in public health. According to the filing, "The removal of the webpages and datasets creates a dangerous gap in the scientific data available to monitor and respond to disease outbreaks, deprives physicians of resources that guide clinical practice, and takes away key resources for communicating and engaging with patients."
Nine out of twelve public health researchers on CDC's advisory board signed a letter to the agency's acting director seeking explanation for the data removal. These scientists expect to face consequences for speaking out but emphasize the critical nature of maintaining public access to health data.
Data Preservation Efforts
As federal health datasets disappeared, researchers and institutions launched rapid preservation efforts. Harvard University organized its first "datathon" to archive website content through the Wayback Machine, while other academic institutions worked to preserve datasets locally.
The Kaiser Family Foundation reports having downloaded significant portions of CDC data prior to removal. While some CDC data files have been restored, they currently lack essential documentation like questionnaires and codebooks needed for analysis.
For healthcare providers needing immediate access to clinical guidelines, medical associations are working to provide archived copies of treatment protocols. The Infectious Disease Society of America and HIV Medicine Association are coordinating with members to ensure continued access to critical clinical resources.
State health departments maintain some parallel data collection systems that may help fill gaps in federal surveillance. However, these systems often rely on federal frameworks for standardization and analysis, potentially limiting their utility as standalone resources.
These preservation efforts, while necessary, cannot fully replace the coordinated federal data infrastructure needed for comprehensive public health surveillance and research.
Recommendations
Healthcare providers and public health officials should consider these immediate steps to ensure continued access to vital health information:
Data Access and Preservation
Download and securely store copies of restored CDC datasets, including documentation
Maintain offline copies of current clinical guidelines and protocols
Establish relationships with academic institutions archiving federal health data
Alternative Data Sources
Connect with state and local health departments to access regional surveillance data
Utilize medical society and professional organization resources for clinical guidance
Consider participating in alternative data collection networks being established by research institutions
Advocacy Actions
Support ongoing legal efforts to restore data access
Document specific impacts of data loss on care delivery and research
Engage with professional organizations coordinating preservation efforts
Future Planning
Develop contingency plans for maintaining essential health surveillance
Build redundant data collection systems where feasible
Strengthen partnerships with academic and nonprofit research organizations
These steps cannot fully replace federal health data infrastructure but may help maintain critical public health functions while broader access issues are resolved.