I 117th CONGRESS 2d Session H. R. 7265 IN THE HOUSE OF REPRESENTATIVES March 29, 2022 Mr. Cohen (for himself, Mr. Fitzpatrick , and Mr. Cleaver ) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To amend the Public Health Service Act to authorize the Secretary of Health and Human Services to carry out a program of research related to cerebral palsy, and for other purposes.

1. Short title This Act may be cited as the Cerebral Palsy Research Program Authorization Act of 2022 . 2. Findings Congress finds the following: (1) Cerebral palsy is the most common motor disability in children, affecting more than 1,000,000 Americans, 1 in 345 children, and over 17,000,000 people worldwide. (2) In the United States, more than 10,000 babies are diagnosed with cerebral palsy each year. (3) Cerebral palsy is a broad group of disorders disrupting a person’s ability to move, sit, stand, walk, talk, and use their hands. (4) In more than 80 percent of cases, the cause of cerebral palsy is unknown. (5) Seventy-five percent of individuals with cerebral palsy also have 1 or more additional developmental disabilities including epilepsy, intellectual disabilities, communication problems, learning and attention disorders, chronic pain, autism, hearing disorders, and visual impairments or blindness. (6) Children with cerebral palsy are more likely to die from the flu and related viruses, including COVID–19, than children without neurologic disorders. (7) There is no consensus of best practices for a person with cerebral palsy at the time of diagnosis or through the lifespan. (8) It is estimated that the lifetime care and medical costs for all people with cerebral palsy who were born in 2000 alone will total more than $13,500,000,000. The loss of productivity and lost wages of the individual with cerebral palsy and their family members is more than $35,000,000,000. (9) There is no known cure for cerebral palsy, and in most cases, it is not preventable. 3. Cerebral palsy research Title III of the Public Health Service Act is amended by inserting after section 317C of such Act ( 42 U.S.C. 247b–4 ) the following new section: 317C–1. Cerebral palsy research (a) In general The Secretary, acting through the Director of the Centers for Disease Control and Prevention, and in consultation with other Federal agencies and partners, shall carry out (directly or through grants or contracts) a program of research related to cerebral palsy, including— (1) research on— (A) the most promising avenues of cerebral palsy diagnosis and treatment; (B) factors that may mitigate the prevalence of cerebral palsy; and (C) the health care and societal costs of cerebral palsy; (2) public health surveillance; and (3) other research that the Director of the Centers for Disease Control and Prevention determines to be appropriate to provide education and training for health professionals and the general public for purposes of diagnosing, treating, and explaining the causes, prevalence, and lifelong effects of cerebral palsy. (b) Technical assistance The Secretary may (directly or through grants or contracts) provide technical assistance to public and nonprofit private entities in furtherance of research under this section. (c) Evaluations The Secretary shall (directly or through grants or contracts) provide for the evaluation of activities under subsection (a) in order to determine the extent to which such activities have been effective, including evaluation of the effects of such activities on various demographic populations. (d) Authorization of appropriations To carry out this section, there is authorized to be appropriated $5,000,000 for each of fiscal years 2023 through 2028. . 4. Updating Strategic Plan for Cerebral Palsy Research (a) In general Not later than 1 year after the date of enactment of this Act, the Director of the National Institutes of Health, acting through the Director of the National Institute of Neurological Disorders and Stroke and the Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development— (1) shall conduct a strategic workshop with key stakeholders to provide updates on promising research performed to date with the goal of further refining the specific opportunities that were identified in the NINDS/NICHD Strategic Plan for Cerebral Palsy Research dated September 30, 2017 (or any successor strategic plan); (2) shall update such strategic plan (or any successor strategic plan) to include— (A) new research opportunities that are identified in the workshop under paragraph (1); (B) a process and timeline for soliciting proposals for research on cerebral palsy; (C) implementation and clinical studies aimed at early detection and intervention, comparative effectiveness, and functional outcomes; and (D) surveillance; (3) may include in such updated strategic plan a focus on basic and translational discoveries, including with respect to— (A) neuroprotective medicine; (B) regenerative medicine and mechanisms of neuroplasticity; and (C) genomics; and (4) shall publish the updated strategic plan. (b) Authorization of appropriations To carry out this section, there is authorized to be appropriated $500,000 for each of fiscal years 2023 and 2024.