HB 5465 Summary

• Establishes a Rare Disease Review Committee within the Department of Health and Human Services with 9 members appointed by the governor, including physicians, nurses, social workers, and public members.

• Defines "rare disease" as any disease or condition affecting fewer than 200,000 individuals in the United States at any one time.

• Committee shall develop and maintain a publicly available list of rare diseases, review it biennially, and annually select at least one disease for in-depth analysis of prevalence, costs, and other relevant findings.

• Committee must prioritize review of specific diseases including spina bifida, Krabbe disease, cystic fibrosis, pediatric autoimmune neuropsychiatric disorders, long QT syndrome, and cytomegalovirus.

• Committee shall submit annual reports by September 30 each year with findings and legislative recommendations to house and senate health policy committees, with reports made publicly available on department website for at least 4 years.