In this edition of AcademyHealth’s Situation Report, we share how our advocacy is helping shape federal decisions on research funding and data access, flag urgent developments around the HHS reorganization and gender-affirming care restrictions, and provide new resources to help you stay informed and take action.
In today’s issue:
- AcademyHealth Submits Written Testimony to Appropriators on Behalf of AHRQ
- AcademyHealth Advocacy Prompts CMS to Rethink Research Data Access Shift
- HHS Reorganization Continues to Spark Concern
- Federal Court Blocks NIH Indirect Cost Cap; HHS Appeals
- Trump Administration Advances Series of Federal Actions Targeting Gender-Affirming Care Access
- Key Resources: Maps, Grant Termination Trackers, and Health Policy Updates
- What You Can Do: 3 Key Actions
AcademyHealth Submits Written Testimony to Appropriators on Behalf of AHRQ
AcademyHealth President and CEO Aaron Carroll submitted his written testimony (here) on April 9 to the House Appropriations Committee, Subcommittee on Labor-HHS supporting a fully funded and intact Agency for Healthcare Research and Quality (AHRQ). As part of his testimony on why Congress should support the Friends of AHRQ request for $500 million in funding for an intact Agency, he said:
“It is critical that Congress fully invest in health and ensure that the appropriated funding is spent as Congress intended. Codifying the unlawful cuts to the Agency would further erode Congress’s Article I, Section 9 responsibilities. We also call on Congress not to codify any reorganization plan initiated by the Administration into the appropriations process. Federal agency structure is determined by law, requiring deliberative congressional action to ensure responsible expenditures of taxpayer money.”
AcademyHealth continues to advocate on behalf of AHRQ and in opposition to the gutting of the Agency earlier this month. To learn more and join our advocacy, see our Stand with ARHQ toolkit, here.
AcademyHealth Advocacy Urges CMS to Rethink Research Data Access Shift
In February of 2024, the Centers for Medicare and Medicaid Services (CMS) announced significant changes to their research data access policy by transitioning to the Chronic Conditions Warehouse Virtual Research Data Center (CCW VRDC). Nearly 300 researchers and agencies, including AcademyHealth, responded to CMS, highlighting major concerns for the impact the proposed changes would have on research. As a result, CMS paused the implementation of the planned changes. More recently, CMS released a request for information in January to gain a better understanding of how the proposed research data access policy changes would affect researchers. AcademyHealth submitted a response to this request, informed by responses gathered by AcademyHealth members and the Medicaid Data Learning Network. The response highlights researchers’ concerns about the CCW VRDC’s capacity and the high cost researchers will incur to use the new system.
HHS Reorganization Continues to Spark Concern
Amid broader depletions of the federal workforce, health secretary Robert F. Kennedy Jr. has reduced the Department of Health and Human Services (HHS) workforce by as many as 10,000. As more details about the potential impact of these actions are being reported, HHS workers and other experts are sounding the alarm.
Among the alarms being raised, many workers report that they were given no opportunity to hand off their ongoing projects or train additional workers. In addition, with administrative, human resources, and warehouse staff gone, lab leaders at the National Institutes for Health (NIH) are having trouble finding and purchasing basic supplies, like food for lab animals, reagents, and anything that comes on dry ice. Even if these supply issues are resolved, researchers believe they won’t be able to produce as much research without the previous levels of administrative staff or subject-matter experts, and the department will be unable to turn to contractors to help cover critical gaps. Other concerns include layoff initiated lapsed cyber security.
Experts and HHS workers warn that the combination of mass firings and contract terminations will directly affect the health of Americans, pointing to examples such as the removal of a team of technical experts within the Office of the Assistant Secretary for Planning and Evaluation (ASPE) who set the federal poverty guidelines that determine eligibility for programs like Medicaid, SNAP, childcare, and more. The magnitude of the cuts calls into question HHS’ ability to perform basic functions of the agency, such as disease surveillance, chronic disease research, pharmaceutical evaluations, and disease prevention. Further adding to concern, experts point to rising cases of measles, record levels of chronic disease, and increasing barriers to accessing affordable health care.
Meanwhile, the Trump administration has ordered HHS to reduce contract spending by 35%, a directive now confirmed by agency officials. The cut applies across all HHS divisions—including CDC, NIH, FDA, and CMS. Experts warn that eliminating contracts for specialized services, lab testing, records processing, and research infrastructure will further hobble already-reeling agencies. CDC has already canceled contracts tied to HIV prevention, tobacco control, and environmental health—programs that also saw major staff losses. Critics, including former federal health leaders and public health advocates, call the cuts "arbitrary," "senseless," and likely to degrade the nation’s ability to respond to disease outbreaks and safeguard health infrastructure.
Federal Court Blocks NIH Indirect Cost Cap; HHS Appeals
As we reported in a previous edition, a federal judge has issued a permanent injunction against the Trump administration's policy capping indirect costs on NIH grants at 15 percent, a significant reduction from the historical average of 27–29 percent. The court found the cap unlawful, citing potential harm to ongoing research and clinical trials. In response, HHS has filed an appeal, asserting that the cap is a necessary measure to reallocate funds and save $4 billion annually. Research institutions and public health advocates continue to express concern over the potential impact on scientific progress and public health infrastructure.
Trump Administration Advances Series of Federal Actions Targeting Gender-Affirming Care Access
A recently proposed rule from the Centers for Medicare and Medicaid would limit coverage of gender-affirming care for both adults and minors through Affordable Care Act marketplace health insurance plans. Although the rule would not explicitly ban plans from covering related services, it would introduce barriers to access such as increased out-of-pocket costs for patients and more complex administrative processes for insurance companies.
The proposed rule was issued last month and proposes halting individual and small group market plans that are not grandfathered from covering so-called “sex-trait modification services” as an essential health benefit. The public comment period for the proposed rule closed on April 11 with more than 26,000 comments. If finalized, the change would go into effect for 2026 coverage.
Currently, 5 states cover gender-affirming care as essential health benefits, 40 exclude these services, and the remaining states do not explicitly include or exclude the services in their benchmark plans. If finalized, people seeking gender-affirming care who are enrolled in marketplace plans would not be guaranteed the cost-sharing protections characteristic of essential health benefits and insurers would not have to factor gender-affirming care costs into protections such as deductibles and out-of-pocket maximums.
The proposed rule aligns with Trump’s executive order to defund gender-affirming care for minors, which is currently held up in federal court. CMS states that the proposal would correct a regulatory discrepancy between employer-sponsored plans and essential health benefits, the former of which they ascertain do not typically cover gender-affirming care. However, a 2024 survey of employer benefits reveals that nearly 25 percent of large employers report covering gender-affirming care.
Meanwhile, CMS issued a letter to State Medicaid Directors on Friday, April 11, expressing concern over the use of puberty blockers, hormones, and surgeries for treating gender dysphoria in minors, citing emerging evidence of potential long-term harm and a lack of reliable data on benefits. The agency urged states to review their Medicaid coverage and drug utilization policies to ensure services are medically necessary and in the best interest of children. It also reminded states that federal funding cannot be used for procedures that permanently prevent reproduction in individuals under 21.
White House Directs NIH to Study Experiences of Regret and Detransition Following Gender Transition
In a directive from the White House, the Trump administration has ordered the National Institutes of Health to study “regret” and “detransition” among children and adults who have undergone gender transitions. Among numerous concerns researchers have about the directive, such as the perpetuated use of stigmatizing language and the motivation behind the research, many say there is already substantial evidence suggesting that regret after transition and decisions to reverse transitions are very low. Some researchers, however, suggest more research and updated research is still needed.
Key Resources: Maps, Grant Termination Trackers, and Health Policy Updates
In this section, we offer an overview of a map which outlines the local effects of NIH federal cuts, an update on the current health policy landscape, and an NIH grant terminations tracker.
Science and Community Impacts Mapping Project
A multi-university research initiative, among them the University of Pennsylvania and University of Maryland, designed the Science and Community Impacts Map to quantify the local effects of NIH indirect funding cuts. According to the map, over 500 counties are projected to lose more than $6.25 million each, and this contrasts with the administration’s announcement of a cap on indirect costs in NIH grants at 15%. University researchers decry these efforts, emphasizing the broad impact indirect funding cuts to the NIH could cause across the U.S. The interactive map also highlights spillover effects, such as Washtenaw County, Michigan’s projected $217 million loss through reduced research-related spending.
Trump Administration's Sweeping Deregulation Reshapes Health Policy Landscape
The Trump administration’s health policy changes includes the following:
- A 10-for-1 deregulation mandate requiring agencies to eliminate 10 existing rules for each new regulation, including guidance documents and interagency agreements.
- Consolidation of 28 HHS divisions into 15 entities, resulting in a 20,000-employee reduction impacting agencies such as CMS, NIH, and the CDC.
- Revocation of the 1971 Richardson waiver, allowing HHS to bypass public comment periods for grants, contracts, and benefit programs. This will hinder HHS’s ability to implement new legal and policy mandates.
NIH Grant Terminations Tracker
As NIH grants are continuously terminated, the NIH Grant Tracker is updated nightly with information derived from information published by HHS and self-reported terminations from scientists. This tracker is maintained by Noam Ross of rOpenSci and Scott Delaney of the Harvard T.H. Chan School of Public Health, with input and support from additional volunteers.
Due to significant inconsistencies regarding terminated cuts – including temporary reinstatements without public notice – the tracker acknowledges that uncertainties in the dataset exist. Dataset users can filter by research topics, institutions, or keywords flagged by the administration as controversial.
What You Can Do: 3 Key Actions
The challenges facing health research are significant, but your voice matters. Here are three key actions you can take:
- Advocate for AHRQ Funding: Support a fully funded and intact Agency for Healthcare Research and Quality by sharing our Stand with AHRQ toolkit with your network and urging Congress to act.
- Speak Out on Policy Changes: Respond to public comment periods on policy shifts and continue to publicly express your support for health research funding, access to high-quality data, and nonpartisan health policy grounded in evidence.
- Document and Report Impacts: If your research is impacted by funding cuts or policy changes, report your experiences through channels like the NIH Grant Terminations Tracker to help track and address the broader effects.
Previous Updates
This is the latest in a series of Situation Report updates from AcademyHealth. You can find prior issues here.
We’re pleased to offer this work as a free resource, and if you’d like to support our efforts to keep it going, we’d truly appreciate your donation. You can contribute here. Thank you for your support!