National Plan for Epilepsy Act
- Sponsor
- Rep. Costa, Jim [D-CA-21]
- Committees
- Energy and Commerce Committee (primary)
- Last action
- Feb 11, 2025
Bottom line
This bill aims to create a comprehensive, coordinated federal strategy to combat epilepsy through research, improved care, and public awareness, guided by an expert advisory council.
What it actually does
This bill establishes a 'National Plan for Epilepsy' within the Public Health Service Act, mandating the Secretary of Health and Human Services to coordinate federal research, improve diagnosis and treatment, and assess progress in preventing, diagnosing, treating, and curing epilepsy. It also creates an Advisory Council on Epilepsy Research, Care, and Services, composed of federal representatives and non-federal experts, to advise the Secretary and Congress on epilepsy-related issues through regular reports and public meetings.
Proponents argue
Supporters argue the bill addresses a significant public health burden by establishing a much-needed national strategy to coordinate efforts, improve patient outcomes, and accelerate research into prevention, diagnosis, treatment, and cures for epilepsy, a condition affecting millions and incurring substantial healthcare costs.
Opponents contend
No direct opposition is immediately apparent for a bill focused on coordinating research and care for a specific disease. Potential concerns, if any, might revolve around the creation of new bureaucratic structures or the allocation of resources, but these are not explicitly stated in the provided context.
The bill is concise and can be thoroughly understood in a short amount of time, making it accessible for quick evaluation.
Section 3, adding Section 320C(a) to the Public Health Service Act
Establishment of the National Plan for Epilepsy
This provision mandates the Secretary of Health and Human Services to establish and maintain a 'National Plan for Epilepsy.' This plan will integrate and update strategies for preventing, diagnosing, treating, and curing epilepsy, including coordinating research and services across all federal agencies, encouraging new treatments, and improving early diagnosis and care coordination.
Supporters argue
Supporters argue this plan is crucial for a unified, strategic approach to a complex disease, ensuring federal efforts are not fragmented and resources are optimally directed towards effective solutions and patient support.
Critics contend
No specific opposition is typically raised against establishing a national plan for disease research and care coordination, as it is generally seen as beneficial. Potential concerns might be about the scope or cost, but not the concept itself.
Tradeoffs
The primary tension is ensuring effective coordination across numerous federal agencies without creating excessive bureaucracy, balancing broad research goals with immediate patient care needs.
Section 3, adding Section 320C(b) to the Public Health Service Act
Annual Assessment of Nation's Progress
This provision requires the Secretary to conduct an annual assessment, starting two years after enactment, of the nation's progress in preparing for and responding to the burden of epilepsy. The assessment must include recommendations for priority actions and describe steps taken or to be taken to implement them.
Section 3, adding Section 320C(c) to the Public Health Service Act
Establishment of an Advisory Council on Epilepsy Research, Care, and Services
This provision establishes an Advisory Council to advise the Secretary on epilepsy-related issues. The Council will include representatives from various federal agencies (NIH, CMS, CDC, FDA, DoD, VA, HRSA) and expert non-federal members, including individuals living with epilepsy, caregivers, healthcare providers, researchers, and representatives from nonprofit epilepsy organizations. It mandates quarterly meetings and biennial meetings with other experts, all open to the public.
Section 3, adding Section 320C(c)(4) to the Public Health Service Act
Advisory Council Reports to Secretary and Congress
The Advisory Council is required to submit a report to the Secretary and Congress every two years, starting 18 months after enactment. This report must evaluate federally funded epilepsy efforts, recommend priority actions to improve coordination and support for programs, research, and data collection, and provide specific recommendations on improving diagnosis, treatment, research, public awareness, access to care, preventing SUDEP, reducing financial impact, and evaluating the National Plan's implementation.
Section 3, adding Section 320C(d) to the Public Health Service Act
Annual Reports from the Secretary to Congress
The Secretary is required to submit annual reports to Congress evaluating all federally funded efforts in epilepsy research, prevention, diagnosis, treatment, and care. These reports must include recommendations for priority actions based on the Secretary's annual assessment and the Advisory Council's reports, along with implementation steps and a description of progress made on the National Plan.
Section 3, adding Section 320C(e) to the Public Health Service Act
Data Sharing Mandate
This provision mandates that all federal agencies, both within and outside the Department of Health and Human Services, that possess epilepsy-related data must share it with the Secretary as necessary to fulfill the annual reporting requirements.
Section 3, adding Section 320C(f) to the Public Health Service Act
Program Sunset
This section stipulates that the entire new Section 320C, which establishes the National Plan for Epilepsy and the Advisory Council, will cease to be effective on December 31, 2035.
Requires all federal agencies with epilepsy-related data to share it with the Secretary for reporting purposes.
Section 3, adding Section 320C(e) to the Public Health Service Act
Why it matters:Standard legislative practice to place administrative requirements towards the end of a section; not necessarily evasive.
Case for: Essential for comprehensive data analysis and informed policy-making, ensuring a full picture of epilepsy's impact and federal efforts.
Case against: Could raise concerns about data privacy, security, and the administrative burden of inter-agency data transfer protocols, though the bill specifies 'as necessary.'
Estimated impact: Facilitates a more robust national understanding of epilepsy, potentially impacting research directions and resource allocation.
The entire new section establishing the National Plan for Epilepsy and its Advisory Council will expire on December 31, 2035.
Section 3, adding Section 320C(f) to the Public Health Service Act
Why it matters:Often included as a mechanism for legislative review, ensuring programs are re-evaluated after a set period. It's not necessarily evasive but can be overlooked.
Case for: Ensures accountability and allows for periodic congressional review and potential reauthorization or modification of the program based on its effectiveness and evolving needs.
Case against: Creates uncertainty for long-term planning and sustained efforts in epilepsy research and care, potentially disrupting progress if reauthorization is not timely.
Estimated impact: Sets a definitive lifespan for the program, requiring future legislative action to continue its operations beyond 2035.