In this edition of AcademyHealth’s Situation Report, we cover major reversals on autism and women’s health research, growing threats to medical science flagged by The Lancet and NIH insiders, and alarming slowdowns in federal fund disbursement. We also preview a critical members-only town hall and offer digital safety tips for researchers navigating politicized terrain. With policy shifts happening fast and often behind closed doors, researchers must stay alert, speak out, and act collectively—whether by raising flags within their institutions, participating in public discourse, or joining forces through professional associations. Your voice matters—especially now.
In today’s issue:
- Administration Signals Reversal on Autism Registry, Women's Health Funding
- Lancet Warns of Threats to U.S. Medical Science
- First-Hand Account Flags NIH Budget Cuts and Operational Slowdowns
- New Tracker Details Delays in Disbursing Federal Funds
- Scientific Integrity at Risk: Why Public Data Matters More Than Ever
- Navigating Change in Health Policy: Exclusive Member Town Hall on May 21
- Resources for Protecting Yourself Online
Administration Signals Reversal on Autism Registry, Women's Health Funding
For now, news, and subsequent concerns, of funding cuts to a groundbreaking study in women’s health and of the creation of a national autism registry, appear to be on pause. The Department of Health and Human Services recently announced that the federal health department is not creating a new registry of Americans with autism. This announcement comes days after the director of the National Institutes of Health (NIH), Jay Bhattacharya, announced the intent for the registry in an all-staff meeting. Met with widespread health data-privacy concerns from autism self-advocates and researchers alike, it now appears two separate efforts remain on the horizon: a data platform for chronic disease and a large-scale autism research initiative. Both efforts have the potential for good, pending effective management and sound motivations.
In a similar story of research announcements and public pressure, earlier threats to the funding of a large-scale women’s health research project, the Women’s Health Initiative (WHI), have since been walked back. Funding for the WHI, whose findings have changed medical practice on hormone therapy, bone health, and cardiovascular health, was to end prematurely, at the close of this fiscal year. Muddied by contradicting messages from the media, NIH program officers, and RFK Jr. himself, funding appears to be reinstated, suggesting the current fate of the project remains safe for now, however the team still awaits official confirmation.
The WHI’s story of reversal is one of many research teams caught in limbo between abrupt cessations to their projects’ funding and just-as-quick reinstatements and fits into a broader trend of health care reversals since January. While there appears to be no pattern for research funding reinstatements and other reversals, some still find pursuing appeals and other public pressure a worthy exercise in holding the federal government accountable to its obligations.
What Researchers Can Do: These developments underscore the importance of staying engaged. While it’s not clear what prompted the reversals, early and coordinated responses from researchers and advocates likely played a role. Researchers can help by raising concerns through their institutions and professional associations, contributing to public discourse, and sharing the real-world impacts of funding disruptions or policy shifts.
Lancet Warns of Threats to U.S. Medical Science
In a new editorial, The Lancet criticizes recent actions by the Trump administration that it says undermine independent science and public health. The piece highlights intimidation of medical journals, deep proposed cuts to NIH and CDC budgets, and the sidelining of global and domestic health programs. The journal joins growing calls for the resignation of HHS lead Robert F. Kennedy Jr., citing concerns over unscientific policy agendas and damage to the U.S.’s scientific leadership.
First-Hand Account Flags NIH Budget Cuts and Operational Slowdowns
An anonymous NIH employee has published a detailed insider account warning that the agency may face significant budget cuts—up to 44 percent—through a combination of internal spending slowdowns and potential Congressional rescission. The report highlights procedural changes, leadership removals, and grantmaking delays that have led to a backlog in peer review and grant awards. If funds remain unspent by the end of the fiscal year, Congress could vote to rescind the surplus, potentially setting a lower baseline for future NIH budgets. The piece emphasizes the importance of public attention and administrative action to resume normal NIH operations and safeguard biomedical research funding.
New Tracker Details Delays in Disbursing Federal Funds
The House and Senate Appropriations Committees’ Democratic staffs have released a new tracker highlighting an estimated $430 billion in federal funding that has not yet been disbursed, despite being approved by Congress. The tracker provides a snapshot of programs facing delays or blocks in funding, including support for disaster recovery, medical research, Head Start, public safety grants, infrastructure, and health services. According to the Committees, some of the funding is tied up in legal disputes or administrative delays. The tracker is available on both Committees’ websites.
Scientific Integrity at Risk: Why Public Data Matters More Than Ever
In the second post of our data series, we examine how the loss or manipulation of public data erodes scientific integrity—a cornerstone of evidence-based policymaking. Once broadly supported across political lines, trustworthy data is now under threat from censorship and workforce cuts, weakening transparency and public trust. This installment makes the case for restoring data access as a nonpartisan imperative to protect science—and the people who depend on it.
Navigating Change in Health Policy: Exclusive Member Town Hall on May 21
Join us for an exclusive, members-only AcademyHealth town hall with President and CEO Aaron Carroll and Director of Advocacy Josh Caplan as they explore the pressing challenges facing the health services and health policy research field and discuss strategies to navigate them. The town hall will cover updates on the Agency for Healthcare Research and Quality, the Department of Health and Human Services reorganization, FY26 federal appropriations, the Kennedy v. Braidwood Management, Inc. case, and Medicaid reconciliation efforts. This interactive session offers members the opportunity to engage in open dialogue with AcademyHealth leadership, connect with peers, and share experiences related to advocacy and policy.
Date and Time: Wednesday, May 21 at 12:00p.m. ET
Register Now: AcademyHealth Town Hall Meeting | AcademyHealth
Resources for Protecting Yourself Online
Researchers who speak out on politicized or sensitive topics may face online harassment, including doxxing and targeted attacks. These two resources offer practical guidance to help you stay safe:
- The ACLU’s guide to defending against online doxxing and harassment offers clear steps you can take to protect your personal information and respond to harassment.
- The Digital Safety Kit for Public Health from Harvard provides tailored tools for researchers, especially those in health, to strengthen their digital security while continuing to engage with the public.
Whether you’re preparing to speak out or are already facing pushback, these resources can help you protect yourself and your work.
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!