We are excited to see Congress continues to recognize the importance of investing in the epilepsies. In July, the House Report included Epilepsies Language. On August 1st, the Senate Appropriations Committee completed the markup process for its version of the Fiscal Year 2025 Labor Health & Human Services Education Appropriations Bill.
Complementing similar language passed by the House a few weeks ago, the Senate Appropriations Committee urges NINDS, in collaboration with the epilepsies stakeholder community to establish the Pediatric-Onset Epilepsies Network that would “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”. Moreover, the language directs regular reports from NIH on findings and planned actions in this space.
Further, the Senate recognizes the need for accurate surveillance and epidemiologic data on the epilepsies, including by leveraging infrastructure and expertise at the CDC. In addition, to asking the CDC to enhance its ongoing efforts, the Committee looks forward to receiving a report from CDC that among other actions, would a examine the feasibility of adding epilepsy to the National Neurological Conditions Surveillance System.
This language is not a coincidence. It follows on submissions from our government relations team, many partner organizations (shout outs to Epilepsy Foundation, CURE Epilepsy, PERC, EAA, REN, DEE-P, LGS, Dravet, TSC, and so many more!) and many meetings to urge adoption.
We look forward to continuing our efforts in this space for the duration of the year, as Congress puts together its final budget packages for the next fiscal year. We thank the epilepsies advocates, caregivers, clinicians, researchers, doctors, and other stakeholders with whom we have partnered with to get to this milestone. We are determined to build on this incredible progress, with the ultimate goal of improving outcomes for people living with epilepsy, their families and their communities.
The Senate Language follows below:
Pediatric Onset Epilepsies Network – (NIH/NINDS)
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. While there
are approximately 470,000 children currently living with epilepsy, as well as three million adults, many of
whom were diagnosed as children. A number of these types of epilepsy do not respond to existing
medications. To develop and test more effective. therapies, studies must precisely classify children with
the same epilepsy for clinical trials. Creating an infrastructure with a goal of understanding pediatric
epilepsies diagnoses by cause and co- ordinating research across institutions may increase the potential
for scientific progress in the era of precision medicine. This net- work 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. There- fore, 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.
CDC
Epilepsy.—The Committee includes $11,500,000 and commends CDC for its ongoing leadership of this
successful program and effective community collaboration, and encourages further efforts to eliminate
stigma, improve awareness and education, and better connect people with epilepsy to health and
community services. The Committee appreciates CDC’s ongoing epilepsy-related surveil- lance and
funding of epidemiologic studies on epilepsy and recognizes the importance of data to accurately
understand the incidence, prevalence, and mortality rate of epilepsies, along with individual and social
risk factors that influence health outcomes. The Committee encourages CDC to enhance surveillance and
epidemiologic studies of the epilepsies to generate data that can guide interventions to improve outcomes
for people with epilepsy, including interventions for patients with drug-resistant epilepsy. The Committee looks forward to receiving the report requested in fiscal year 2024 on current gaps in surveillance data of people living with epilepsies and on the feasibility, cost, and timing of case reporting epilepsy through the addition of the disease to the National Neuro- logical Conditions Surveillance System.
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