Strong Bipartisan Rejection by Senate Appropriations Subcommittee to Deep Cuts to NIH and Medical Research; Directs Focus on Pediatric Epilepsies

On July 31, the Senate Appropriations Subcommittee, by a 26-3 bipartisan vote, adopted the bill providing appropriations for many health research programs so critical to continuing progress towards better treatments and outcomes for severe and all epilepsies. The Committee rejected catastrophic cuts proposed by the President to the overall NIH budget, instead increasing NIH funding $400 million over 2025.

The bill rejects the approximately $4 billion — or 50% — cut to CDC programs proposed by President Trump’s budget request. The CDC Epilepsy Program was flat-funded at $11.5 million. While not an increase, it’s great news compared to the President’s steps to abolish the program entirely, ending all federal data collection on the epilepsies. The Safe Motherhood/Infant line which contains studies of deaths in the epilepsies got a $3 million increase to $113.5 million. The bill includes strong report language (although no funding) for a Pediatric-Onset Epilepsies Network championed by the collaborative Epilepsies Action Network.

DEE-P leadership will continue to advocate for full funding to support research to accelerate better treatments for the epilepsies. We work collaboratively with our partners at the Epilepsies Action Network to develop an amendment to try and get funding for the pediatric research network and prepare for efforts to impact the eventual conference between the House and Senate to enact the funding bill for 2026.
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Senate Appropriations Committee language on Pediatric-Onset Epilepsies Network:

“The Committee is aware of the enormous economic cost and toll in human suffering resulting from epilepsies and considers research in this area a high priority. There are approximately 470,000 children currently living with epilepsy, as well as three million adults, many of whom were diagnosed as children. Creating an infrastructure with a goal of understanding pediatric epilepsy diagnoses by cause and coordinating research across institutions may increase the potential for scientific progress in the era of precision medicine. This network could include efforts to unite key assets and support a collaborative, multidisciplinary research model to enroll patients from many settings to accelerate therapy development and expedite translation of research findings into standard clinical care. Therefore, the Committee urges NINDS, in collaboration with the epilepsies stakeholder community and the Curing the Epilepsies conference, to establish the Pediatric-Onset Epilepsies Network. Such a network could enable cooperative research studies, accelerate the development of knowledge about epilepsies, and rapidly advance therapeutic options, including genetic therapies, and their implementation to improve treatments and healthcare outcomes. The Committee directs the NIH Director to provide a report on key findings and planned actions within 1 year of enactment and annually thereafter.”

DEE-P continues to advocate for full funding to advance research and better outcomes across the DEEs.

Take Action: While this is an important step, there are still many outstanding issues. The full Senate Appropriations Committee, the entire Senate, and then the House must approve the bill—and the House may be less likely to oppose the deep cuts proposed by the President. We encourage individuals to write their Senators now, assuring they are members of the epilepsy caucus மற்றும் 
urging them to support the Senate subcommittee’s rejection of these deep cuts to medical research.

Please note: this update is current as of today, but things are moving quickly in Congress. With very few legislative days left, it’s possible that a continuing resolution may be passed, delaying final decisions on funding for the fiscal year beginning October 1st, 2025.

JayEtta Hecker – Board Chair and Co-Founder