Plaintiffs Join Lawsuit Aimed at Restoring Health Data on Federal Websites

On May 20, AcademyHealth announced that it had joined a federal lawsuit to restore public health data recently removed from federal websites. Over the past several months, the administration has directed the deletion of thousands of webpages from federal agencies, including the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Food and Drug Administration (FDA), AcademyHealth explained in a press release. “The missing content includes essential information on LGBTQ health, gender and reproductive issues, clinical trials, vaccine guidance, and HIV/AIDS research.”

Washington State Medical Association et al. v. Kennedy et al. aims to restore the removed data and secure legal protection against future attempts to suppress public health information. “Dozens (if not more) of taxpayer-funded webpages, databases, and other crucial resources have vanished since January 20, 2025, leaving doctors, nurses, researchers, and the public scrambling for information. These actions have undermined a longstanding, congressionally mandated regime; irreparably harmed Plaintiffs and others who rely on these federal resources; and put the nation’s public health infrastructure in unnecessary jeopardy,” according to the complaint.

Healthcare Innovation recently discussed what’s at stake with Dr. Aaron Carroll, president and CEO of AcademyHealth, a nonprofit organization dedicated to advancing the fields of health services research and health policy.

Could you provide some background on this case?

The lawsuit addresses the fact that a lot of essential public health data has been removed from federal websites. These data are critical to a wide variety of people, including policymakers, researchers, and, more importantly, communities, clinicians, and people across the political spectrum who need to make informed, evidence-based decisions that protect everyone's health.

These aren't just abstract data. They are things that describe real-world situations and real people, and they're necessary for a wide variety of reasons. It's why they exist. AcademyHealth is a non-partisan organization that represents health services and health policy researchers. We are committed to the production and use of data and evidence to improve health and healthcare for all. We have fought hard for unrestricted access to good data under both Democratic and Republican administrations, and our goal is to ensure that data is restored.

What is at stake?

One great example that I can think of is the use of data in the past to identify things related to maternal mortality. The data basically showed that there was a significant problem amongst expecting mothers in West Virginia, as they smoked more than in other places. Because of that, the state was able to implement targeted interventions, including a Medicaid case management home visiting model that delivered a smoking cessation curriculum at home, and also the ability to train providers to provide smoking cessation services at prenatal visits. Smoking rates among pregnant women dropped significantly from 25 percent to 10 percent over the course of a four-year period. As a result, fewer infants were born prematurely. Fewer babies died before reaching their first birthday.

If you don't have those kinds of data available to people in real time, where they're easily accessed, you can't do things with them like that. Another example would be a lot of the data that the PEPFAR program was able to provide on trends in HIV infections and how different interventions were working; those are now at risk.

The National Diabetes Prevention Program, a lifestyle change program, has great information on how that works, because of the data collected and then released. If we don't have reliable public access to that data, we can't tell what's working and what's not, and how to get the care to the people that need it, where they need it.

It's not just about data. It's about the health and safety of millions of Americans who depend on transparent and timely information to advocate for resources and make informed choices.

What are your thoughts on how the lawsuit will go?

We’re hoping to see things move quickly. A favorable ruling would restore access to critical health data and reaffirm the government's responsibility to provide transparent and equitable public information. It would also be good in setting a precedent that strengthens the protections for public health data going forward against future political or administrative removal.

We need clarity, and that's what we're really hoping to get, no matter how the court rules. We need the administration to explain what happened to these data sets and what, if anything, they plan to do to restore and maintain public access. This is a crucial step towards accountability and exactly the kind of forward-thinking actions and leadership that AcademyHealth is committed to advancing.

We hope that the courts will recognize the essential public health interest in maintaining open and accessible health data, and we're hopeful that they'll rule in favor of restoring this kind of transparency.

What does the timeline look like?

The lawyers are trying to move things as quickly as possible.

Do you have any words in closing?

You can't change what you can't measure; you can't improve what you can't measure. And the reason that so many of these data sets exist is so that we can improve the health and healthcare of Americans, and we want to see that data restored.

Other plaintiffs in the lawsuit include the Washington State Medical Association, the Washington State Nurses Association, the Washington Chapter of the American Academy of Pediatrics, the Association of Nurses in AIDS Care, the Fast-Track Cities Institute, the International Association of Providers of AIDS Care, the National LGBT Cancer Network, and the Vermont Medical Society. 

The Defendants include the Secretary of Health and Human Services (HHS), Robert F. Kennedy, Jr., and leaders of the CDC, NIH, FDA, Health Resources and Services Administration (HRSA), and Office of Personnel Management (OPM).

“This is more than a policy shift; it is a direct attack on science, evidence-based medicine, and our profession’s ability to care for our patients,” John Bramhall, MD, PhD, president of the Washington State Medical Association, said about why the organization joined the lawsuit.

“The amount of research, investment, and time put into those websites cannot be measured, and wiping them endangers all Americans, especially those of us who come from marginalized spaces,” Dr. Scout, executive director of National LGBTQI+ Cancer Network, shared in a statement.

Similarly, Dr. José M. Zuniga, President and CEO of the Fast-Track Cities Institute, cautioned in a statement, “The alteration, deletion, or omission of disaggregated HIV and other health data from federal websites is a political decision with dangerous public health consequences for people living with and affected by HIV in the United States.”

Katie Marvin, MD, President of the Vermont Medical Society said about the case, “We have heard from our members that the loss of federal data and disclaimers added to certain websites have already led to more families delaying or declining vaccines, patients opting out of demographic questions, and barriers to providing appropriate patient care and information.”