Mass layoffs on the Division of Well being and Human Companies are persevering with because the company makes good on its intention, introduced on March 27, 2025, to shrink its workforce by 20,000 individuals. Amongst employees dismissed in early April had been a number of groups accountable for fulfilling requests for entry to beforehand unreleased authorities knowledge, info and data beneath a federal regulation often called the Freedom of Data Act, or FOIA.
On the Facilities for Illness Management and Prevention, the workplaces that fulfill such requests have been eradicated, in line with press experiences. In 2024 alone, CDC obtained 1,800 requests for entry to public data. On the Meals and Drug Administration and Nationwide Institutes of Well being, which collectively responded to nearly 14,000 requests in 2024, a number of groups of FOIA workers had been fired. FOIA workplaces at different HHS businesses had been affected, too.
Most individuals could by no means file a public data request with a federal company. However the truth that anybody is allowed by regulation to take action allows the general public to carry authorities accountable and has catalyzed necessary authorities reforms. FOIA requests at federal well being businesses have been notably consequential. They’ve pushed corporations to take unsafe medicine off the market, led to reforms that stop pointless delays in speaking public well being dangers, and prompted insurance policies that decrease costs and enhance entry to taxpayer-funded well being applied sciences.
I’m a well being companies researcher who research the results of public well being regulation, and I’ve noticed how the transparency enabled by FOIA can profit sufferers, clinicians and researchers. Though HHS Secretary Robert F. Kennedy Jr. has said that federal public well being businesses will embrace “radical transparency”, closure of those workplaces suggests in any other case.
What’s an FOIA public data request?
The Freedom of Data Act was handed in 1966 to extend authorities transparency in response to an increase in authorities secrecy throughout the Chilly Struggle.
Anybody can request paperwork from the federal authorities via FOIA.
The regulation requires businesses inside the federal authorities’s government department to proactively publish sure procedural and different supplies and to publicly disclose sure sorts of info. It additionally requires the federal authorities to reveal any paperwork that don’t fall into these classes in response to a written request, so long as they aren’t exempt on account of problems with nationwide safety, overseas coverage or enterprise pursuits.
Any member of the general public, citizen or not, can file a FOIA request.
What can FOIA requests to federal well being businesses reveal?
FOIA requests to HHS businesses have led to vital shifts in public well being regulation and coverage.
In a single instance from the early 2000s, researchers and media shops filed FOIA requests to the FDA associated to a drug referred to as Vioxx, or rofecoxib. The drug, manufactured by the pharmaceutical firm Merck, was accepted by the FDA as a supposedly safer various for osteoarthritis ache. However the paperwork revealed that Merck had considerably downplayed the drug’s elevated danger for coronary heart assaults and strokes.
Data disclosed via these requests prompted congressional investigations that led to new legal guidelines requiring corporations to report outcomes of all medical trials in a public on-line database – together with when trials present that remedies don’t have any significant profit or are unsafe.
The brand new legal guidelines additionally licensed the FDA to require corporations to conduct extra security research after a drug’s approval. This implies the company can take sooner motion to stop affected person hurt by including warnings to drug labels, issuing warnings of potential harms on to docs or withdrawing unsafe remedies fully.
Importantly, FOIA allows ongoing oversight. In 2021, my colleagues and I revealed an investigation that used FOIA to find out whether or not the FDA and NIH had been implementing these medical trial transparency legal guidelines. We discovered that corporations had did not replace 1000’s of medical trials within the database with their outcomes, and that the FDA and NIH had been doing little to compel them. Utilizing the FOIA knowledge as proof, we efficiently petitioned the FDA to step up its enforcement and to publicly record the businesses that had been nonetheless not complying.
Flint residents protest outdoors the Michigan State Capitol in January 2016.
Shannon Nobles/Amsterdam Information through Wikimedia Commons, CC BY-SA
What now for FOIA at HHS?
The sudden dismissal of FOIA groups on the CDC, FDA, NIH and different federal public well being businesses will restrict these businesses’ potential to reply to new and ongoing requests as required by regulation. It will worsen an already hefty FOIA backlog at HHS businesses.
Cuts to FOIA workers additionally hinder the general public from utilizing this regulation to look at and doubtlessly problem current company actions beneath the brand new administration. On April 5, 2025, the watchdog group Residents for Duty and Ethics in Washington filed a number of FOIA requests on the involvement of the Division of Authorities Effectivity, or DOGE, in disbanding the FOIA staff and on the CDC’s reported suppression in March of an knowledgeable evaluation of the Texas measles outbreak.
Based mostly on the automated response – which learn that FOIA workers had been positioned on administrative depart and couldn’t reply to requests – the group filed a lawsuit difficult the FOIA workplace closure, arguing that it violates the Freedom of Data Act and different administrative regulation.
Restricted workers capability might also curtail businesses’ potential to proactively disclose info, similar to knowledge on drug efficacy and security posted by the FDA. Sufferers and clinicians entry such info to make choices about utilizing and prescribing medicines.
HHS representatives have said that they may resume FOIA processing, centralizing the assorted company workplaces beneath HHS in a extra streamlined strategy. Whether or not such an workplace with considerably diminished capability and a scarcity of agency-specific experience will have the ability to successfully and effectively reply to the over 50,000 requests for data obtained yearly stays unclear.
A sample of boundaries to public enter and accountability
FOIA is way from an ideal device for reaching transparency in how the federal government regulates well being and biomedical analysis and coverage. The truth is, at the very least on the FDA, FOIA is expensive and inefficient – partly, as my colleagues and I’ve written, due to the company’s self-imposed, burdensome protocols. However with out an enforceable alternative technique, it’s the solely device obtainable to the general public.
The Trump administration has taken a number of different steps to scale back transparency of federal public well being businesses, leaving the general public with restricted formal avenues outdoors of the courts to weigh in on company actions.
On March 3, 2025, HHS rescinded a long-standing coverage requiring it to solicit public feedback on laws associated to public property, loans, grants, advantages or contracts. Advisory committee conferences the place businesses convene impartial specialists to supply suggestions and the place public stakeholders can present enter have been canceled or postponed.
Moreover, the newly fashioned Make America Wholesome Once more Fee led by Kennedy has met behind closed doorways and with out prior public discover, attended solely by choose, aligned members. It stays unclear if future conferences can be public.
Not solely is closure of FOIA workplaces throughout HHS businesses one more blow to authorities transparency, but it surely additionally prevents the general public from holding businesses accountable and pushing for modifications that enhance well being.
