Following the release of the FY24 Senate LHHS Appropriations bill at the end of July, the Epilepsies Action Network is pleased to share the exciting news that both of our requests were included: CDC NNCSS to include epilepsies and NIH consortium to improve epilepsies research and care.
Each year, Congress crafts 12 appropriations bills in each chamber following the release of the president’s budget proposal. The House and Senate Appropriations committees determine topline spending levels then each of the 12 subcommittees writes their bill. As each passes the committee, it is sent to the floor for a vote where they may be further amended and eventually passed. Most times, the bills passed by House and Senate differ in some significant ways and must be reconciled, which usually occurs in an omnibus package at the end of the year after one or more Continuing Resolutions have been enacted. These are required due to the start of the new fiscal year on October 1. Once the final omnibus is passed by the House and Senate, the president must sign it into law.
Out of the 12 appropriations bills that comprise the federal budget, EAN focused on the Labor, Health and Human Services, and Education bill this year. It provides the budget for the NIH. This year, EAN requested Congress appropriate:
$10 million at the NIH for programming within NINDS and NCATS
Level fund the $5 million CDC funding for the National Neurological Conditions Surveillance System (NNCSS)
The Senate bill acknowledges the enormous economic cost and toll in human suffering resulting from epilepsies and expresses that the Senate LHHS Subcommittee considers research in the epilepsies a high priority. It direc
ts CDC to provide a report on the gaps in epilepsies surveillance data, the first step towards including the epilepsies in the National Neurological Conditions Surveillance System and nationalizing the collection of data on the epilepsies in a meaningful way to measure their incidence, prevalence, deaths and impact. Furthermore, the bill 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. It also urges NINDS to prepare and submit a report to Congress on progress and incorporate key findings and planned actions resulting from convenings of the Curing the Epilepsies conference, an effort to increase accountability and action across the community.
The significance of this recognition in the Senate is huge and the impact of the behind the scenes efforts to meet with leadership, educate staff, host a congressional briefing, form an epilepsy caucus, and generate sign on letters. These are all parts of the advocacy required to sustain this momentum toward successes that will positively impact patients and their families.
We are still awaiting the release of the House LHHS bill, which will not happen until after the August Congressional Recess. Then we will continue to engage with our Congressional Champions to ensure that this important language is included in the final conferenced version of the FY24 Omnibus.
In the meantime, we are working to develop our policy priorities for FY25. We look forward to working as a community to identify the most promising opportunities for increasing federal funding for the epilepsies.