Epilepsies Action Network and our many Partners are pleased to share that the needle was MOVED for the epilepsies thanks to your efforts for FY2024. Let's celebrate this success! And increase our efforts for FY2025 to keep the momentum going.
The Labor Health & Human Services Bill Finally Passed!
The long awaited FY24 LHHS Bill passed on March 22. This is the bill that includes funding for both the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). Read on to learn the GREAT news about what was included for the epilepsies.
Asking for Increased Funding for Epilepsy Surveillance and Translation
We asked epilepsy stakeholders to distill your top priorities and you shared that
1) We can't understand the burden if we can't accurately count it, and
2) Research advances are not translating to improved patient care or outcomes.
We heard you loud and clear. For over a year, EAN and partners have been advocating for increased awareness and funding for the epilepsies. Specifically, we have been asking for:
(1) improved and increased national surveillance of the epilepsies through CDC, and
(2) government recognition of the burden of the epilepsies, new money to improve translating basic research to improved outcomes for patients, and creating accountability to Congress for actions resulting from the Curing the Epilepsies meetings
EAN's Requests Were Included!
Below you can read the final bill and report language. We also explain the practical impact.
The CDC Language: "Epilepsy.-The agreement requests CDC to report to the Committees within 120 days of enactment of this Act on the current gaps in surveillance data of people living with epilepsy and on the feasibility, cost, and timing of potentially adding epilepsy to the National Neurological Conditions Surveillance System."
The Impact:
This means the clock is ticking and within 120 days the CDC must assess its efforts to collect surveillance data on the epilepsies and what gaps currently exist.
CDC needs to provide an accounting of what it would cost to add epilepsy to a system that currently collects national data for Parkinson's and Multiple Sclerosis.
The NIH Language: "Pediatric-Onset Epilepsies Research.—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, there are many different kinds of epilepsies, and the number of children with one specific disease type is relatively small. 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 type of epilepsy for clinical trials. Large numbers of patients are critical to ensuring that study results are meaningful and result in improved patient outcomes. Using a collaborative research model and enrolling patients from many hospitals in the same system greatly increases the ability to detect meaningful differences due to interventions, can significantly accelerate therapy development, and expedites translation of research findings into standard clinical care. Therefore, the Committee encourages NIH to continue to enable cooperative research studies, accelerate the development of knowledge about epilepsies, and rapidly advance therapeutic options and their implementation to improve treatments and healthcare outcomes. Additionally, to better facilitate implementation of translational research, the Committee urges NINDS to prepare and submit a report to the Committee on progress and incorporate key findings and planned actions resulting from convenings of the Curing the Epilepsies conference."
The Impact includes recognition by Congress that -
Epilepsy is a plurality of disorders, not just one disease.
The epilepsies are an enormous burden on our country - economic, personal and otherwise - and require government attention.
There are a significant number of cases that are refractory - or don't respond to medicine.
Infrastructure challenges exist that prevent large numbers of patients from participating in clinical trials and research, and receiving high quality care.
Collaborative research across hospitals and systems will expand access to high quality care and ensure that we learn from every patient.
Collaboration will enable the translation of research findings to standard clinical care and lead to improved interventions and accelerated development of targeted therapies.
Furthermore, it encourages NIH to:
Enable cooperative research studies, accelerate knowledge, and advance therapeutics and their implementation.
Establish collaboration across Institutes & Centers (ICs) as multiple institutes within NIH have epilepsy research portfolios.
Submit a report on progress and key findings and activities resulting from the Curing the Epilepsies conference. This begins the process of ensuring there is accountability to drive action following this every 5 year research conference.
Importantly, it also gives NIH discretion to determine the best ways to fulfill these goals.
How Did This Happen?
Change does not occur without YOUR voice, advocacy, and partnership! Alongside many partners, we have been strategically cultivating key relationships and building infrastructure to support the implementation of our asks. As shared in other blogs, this past year, we helped:
Identify Congressional Champions - increasing our voice in the Nation's Capitol by helping launch bipartisan House and Senate Epilepsy Caucuses (shout out Epilepsy Foundation and Tuberous Sclerosis Complex Alliance for their partnerships!);
Improve Awareness of the burden of the epilepsies and urgency for new research, resources and strategies via convening two House Epilepsy Briefings (including Steny Hoyer and NINDS Dir. Walter Koroshetz, MD);
Sharing our collective concerns with the Administration by twice sending letters to President Biden signed by hundreds of epilepsy stakeholders;
Amplifying our voice via remarks from Rep. Murphy, MD on the House Floor;
Educating Members and their staff one to one via coordinating MANY individual informational meetings;
Connecting people touched by epilepsies to their legislators
Our Work Is Just Beginning
Although we are proud of our efforts for the epilepsies, we want to acknowledge the concern many leaders have expressed for research funding overall. NINDS is the largest funder of epilepsy research within HHS. The final amount allocated for NINDS in FY24 is $2.603 billion. Although this is a $15 million increase over what they received in FY23, NINDS had requested $2.739 billion to fund its activities for FY24. In practice this means they are getting ~$136 million less ($2.603 billion vs. $2.739 billion) than what they said they needed and this will have implications for current and future research including for the epilepsies. We are hearing from epilepsy researchers that this will impact their ongoing work.
We have and will continue to fight for increased funding for NIH. Adding our community's voice to ensure NIH funding is sustained and increased is critically important.