CDC’s Entire Traumatic Brain Injury Team Eliminated
By Malayka Gormally. This is an expanded version of an article published in our May 1, 2025 newsletter. Please consider subscribing to our Concussion Update Newsletter.
On April 1, the entire 5-person traumatic brain injury (TBI) team at the Centers for Disease Control and Prevention (CDC), the team responsible for the Heads Up concussion resources, online training courses, and the National Concussion Surveillance System, got an email: their jobs had been furloughed due to the President's order, and they were to vacate the office that day. They were locked out of their government computers on April 15 and subsequently required to return them.
The TBI team was part of the Division of Injury Prevention; this 200-person team was also eliminated on April 1 as part of the Department of Government Efficiency (DOGE) mass firing of an estimated 10,000 employees at the Department of Health and Human Services.
Concussion Alliance is in communication with two members of the TBI team who wish to remain anonymous. They are deeply concerned that there is no one to maintain or update the Heads Up program, and both believe that the Heads Up website will likely be taken down. We at Concussion Alliance want to make our community aware of this development and continue to provide access to resources for concussion patients and providers.
Meredith Wadman first covered the elimination of the TBI team in an April 10 article for Science. Confusingly, a leaked draft budget for Health and Human Services (HHS), which oversees the CDC, included the "proposed" elimination of the CDC Heads Up program and the National Concussion Surveillance System. (See the April 18 Advocacy Alert by the Brain Injury Association of America.) The confusing situation extends to the former TBI team members. One of the anonymous TBI team members reported to Concussion Alliance, "We are not getting any information about when things are going to change, what is happening. This is such a mess with communication. What we are hearing in the news is what we know."
The impact of the Heads Up program has been profound. The website has many accessible resources, including downloadable PDFs in English and Spanish. Additionally, one of the anonymous employees emailed us saying that the CDC Heads Up program "has trained more than 10 million people on concussion education and management" since 2010 through 6 different training courses, including roughly 150,000 youth sports coaches taking Heads Up's Youth Sports training courses each year.
Coaches are required by law to take a concussion training course in 45 states, with the CDC courses either required or recommended. The anonymous TBI team member worries that "coaches may lose access to the CDC HEADS UP training—making their ability to comply with concussion laws and policies, and ultimately, their ability to coach this upcoming season unclear."
In addition to the courses for coaches, the Heads Up online concussion courses for school professionals, medical professionals, sports officials, and athletic trainers are also at risk. Each year, the online course for school professionals alone educates "thousands of school professionals who work to ensure students with concussion and other types of TBI can succeed in school," according to the anonymous TBI team member.
The TBI team was close to launching the National Concussion Surveillance System, which was to be "a new data system to improve how the U.S. tracks concussions, according to NPR." This program was "'laying the foundation for us finally being able to characterize the size of the public health burden'" of concussion and TBI, according to rehabilitation psychologist John Corrigan in the Science article. "'To hear that it was gone—it was a gut shock.'"
A pilot study for the surveillance system, published this year in The Journal of Head Trauma Rehabilitation, surveyed 10,000 people and found that there are 30x more concussions in adults and 17x more concussions in youth than indicated by the commonly used data from hospital and emergency room visits. Current data "may capture only 1 out of every 9 concussions across the nation." The pilot study found the "overall lifetime prevalence of concussion or TBI" in adults ranged from 19% to 29%.
Because Congress approved funding in 2023 to make the surveillance system permanent, it may survive. The Science article quoted Andrew Nixon, spokesperson for HHS, saying, "All statutorily required programs will remain intact, and as a result of the reorganization, will be better positioned to execute on Congress's statutory intent." However, advocates aren't clear how programs will remain intact "when scientists and subject matter experts in the federal government with decades of experience were laid off," according to the NPR article.
The anonymous TBI team member also emphasized that the Heads Up program "houses the only evidence-based guideline on diagnosis and management of pediatric mild TBI in the United States. This guideline lays the groundwork for clinical decision tools and care for pediatric patients with mild TBI in the United States." Along with the leading experts on pediatric concussion, TBI team members were coauthors of these guidelines, published in 2018 in JAMA Pediatrics, titled Centers for Disease Control and Prevention Guideline on the Diagnosis and Management of Mild Traumatic Brain Injury Among Children.
The TBI team was planning to release an updated version of these guidelines, according to an NPR article. The updated version would have reflected changes to pediatric concussion diagnosis and management guidelines codified in the newest international Consensus statement on concussion in sport developed in 2022 and published in 2023.
The TBI team was about to launch a new program to train workers at domestic violence shelters. Concussion and TBI are common in survivors of domestic violence and intimate partner violence, yet they go largely undetected and unmanaged in these settings.
Will the Heads Up website be taken down or modified by the Trump administration? Concussion Alliance is concerned because several CDC concussion web pages feature this notice: "CDC's website is being modified to comply with President Trump's Executive Orders." One of the former TBI team members told Concussion Alliance that they don't know who added the notice to the web pages (here and here).
The Science article points to numerous examples of President Trump's dismissal of the seriousness of brain injury in military service members and disdain for concussion protocols. Numerous CDC pages were deleted or altered by the Trump administration until a judge granted a temporary restraining order to restore the web pages. Under the Trump administration, as of March 7, the CDC had deleted 5% of its educational videos (329 of 6,112 videos). Included in the list of deleted videos is a 2-minute HeadsUp welcome video.
Tracking and archiving deletion of CDC videos is being done by volunteer archivist Andrew (who goes by "Grumpy"), a member of the subreddit r/DataHoarder, who is referenced in an article by Julian Lucas for The New Yorker. Andrew began archiving CDC videos after his physician-wife noticed the CDC was deleting videos she used to educate her patients.
How can all this concussion education be preserved? An article by Julian Lucas in The New Yorker brought our attention to a complete, functional backup of the CDC website, including Heads Up, called Restored CDC, which was created by a "loose coalition of archivists and librarians."
However, the training courses are not housed on the CDC website, so Restored CDC does not protect them. The courses are on CDC TRAIN, the CDC's external learning management system hosted by the nonprofit Public Health Foundation. An anonymous employee at the Public Health Foundation told Concussion Alliance that the CDC has removed TRAIN courses related to health equity, although the employee knows of no concussion courses being pulled. Andrew ("Grumpy"), the volunteer archivist, has saved all the Heads Up videos on the Internet Archive website. Many of these videos are components of the six training courses that are at risk.
A quote in the Science article sums up this calamity. "'Cutting these programs will literally roll back decades of progress and harm not only the people that have been injured, but the people that are going to be injured in the future,' says Owen Z. Perlman, a physical rehabilitation physician who sits on the board of the Brain Injury Association of America."
Alongside other nonprofits in the field, Concussion Alliance is prepared to support patients, families, and providers who are dealing with this injury, whether they need education about acute management of concussion or managing and treating persisting symptoms. This is a critical period for non-governmental organizations to continue to provide this education, and the need for these resources is higher than ever.
