SB22-186 Summary

• Creates the Colorado Rare Disease Advisory Council in the Department of Public Health and Environment to study and make recommendations regarding needs of individuals living with rare diseases in Colorado.

• Council consists of 12 voting members appointed by legislative leaders (3 each from Senate President, Senate Minority Leader, House Speaker, and House Minority Leader) representing medical professionals, patients, industry, and advocacy organizations, plus 1 non-voting ex officio member from the Office of Health Equity.

• Council shall conduct activities including surveying patient and provider needs within 18 months, developing policy recommendations on access to specialists and treatments, educating insurers and state agencies, and establishing a public website with rare disease resources.

• Members serve three-year terms without compensation, though may be reimbursed for actual expenses if council receives gifts or donations; council may contract with a nonprofit facilitator for up to $50,000 annually.

• Appropriates $80,567 for 2022-23 fiscal year to the Department of Public Health and Environment; council automatically repeals September 1, 2032 subject to sunset review.