Bill > HR1189

This bill establishes a comprehensive National Plan for Epilepsy to address the significant challenges faced by individuals with epilepsy, a brain disorder causing recurring seizures that affects nearly 3 million adults and 456,000 children in the United States. The legislation creates a national project led by the Secretary of Health and Human Services to prevent, diagnose, treat, and potentially cure epilepsy through several key activities, including coordinating research across federal agencies, developing safe and effective treatments, improving early diagnosis and care coordination, and reviewing the impact of epilepsy on patients and their caregivers. The bill also establishes an Advisory Council on Epilepsy Research, Care, and Services, comprised of representatives from various federal agencies and experts with diverse epilepsy experiences, who will meet quarterly, convene research discussions, and submit biennial reports to Congress with recommendations for improving epilepsy research, care, and support. The plan includes provisions for annual assessments of national progress, data sharing between agencies, and specific goals such as reducing stigma, increasing access to specialized care, preventing epilepsy-related deaths, and minimizing the financial impact on affected families. The national plan is set to run until December 31, 2035, with the aim of comprehensively addressing the complex challenges of this neurological condition.

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https://www.congress.gov/bill/119th-congress/house-bill/1189/all-info