Review to improve epilepsy programs, research, prevention, and care

(a)

In general

The Secretary of Health and Human Services (referred to in this section as the Secretary) shall review and, as necessary and appropriate, provide recommendations to Congress regarding, and update existing Federal programs, activities, and strategic plans related to, epilepsy research, prevention, early identification, diagnosis, and treatment for purposes of identifying and addressing knowledge gaps and improving health outcomes related to epilepsy.(b)

Content

The review under subsection (a) shall include—(1)a review of findings from evidence-based research on epilepsy, the status of ongoing, federally-funded research on epilepsy, knowledge gaps related to epilepsy, and disparities in populations with epilepsy;(2)a review of Federal programs related to epilepsy research, prevention, early identification, diagnosis, and treatment, which shall include consideration of—(A)gaps in, and opportunities for, coordination among such programs;(B)opportunities to inform global efforts to prevent, diagnose, treat, and cure epilepsy, as appropriate;(C)near- and long-term goals of such programs to improve research, prevention, early identification, diagnosis, and treatment of epilepsy; and(D)the level of Federal investment in preventing, diagnosing, treating, and curing epilepsy;(3)consideration of opportunities to—(A)improve collaboration between Federal agencies and relevant stakeholders to address gaps in programs, research, and services;(B)eliminate knowledge gaps in research on epilepsy, including a review of the impact of epilepsy on the health and well-being of individuals with epilepsy and their caregivers;(C)improve early diagnosis and coordination of the care and treatment of individuals with epilepsy;(D)better prevent sudden unexpected death in epilepsy and other epilepsy-related mortalities;(E)improve surveillance of epilepsy; and(F)support the development of new treatments, strategies, and other approaches to prevent, diagnose, treat, and cure epilepsy or to enhance functioning and improve quality of life for individuals with epilepsy and their caregivers; and(4)a review of current public health strategies, and consideration of additional evidence-based strategies, related to epilepsy.(c)

External input

To inform the review under subsection (a), the Secretary shall regularly convene and solicit input from other Federal agencies, as appropriate, and relevant stakeholders, including patient advocates and non-Federal subject matter experts.(d)

Report

Not later than 2 years after the date of the enactment of this Act, the Secretary shall submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives a report on the findings of the review conducted under subsection (a), including—(1)a description of steps the Secretary took to solicit stakeholder input pursuant to subsection (c) and a summary of feedback received from, and needs identified by, such stakeholders;(2)recommendations to improve coordination and support of Federal programs in order to better support people with epilepsy, epilepsy research, and data collection, and proposals for implementation of such recommendations, as appropriate; and(3)any changes to Federal programs, activities, or strategic plans recommended by the Secretary based on the review, and any statutory or other barriers that impede implementation of such changes.