570A1DB5BA84DABE87258828006ED46E Hearing Summary

Senator Ginal and Senator Simpson, co-prime bill sponsors, introduced Senate Bill 22-186, which creates the Rare Disease Advisory Council (council) in the Department of Public Health and Environment to study and make recommendations concerning the needs of individuals with rare diseases. The council consists of 12 voting members appointed by the chairs of the House Public and Behavioral Health and Human Services Committee, the House Health and Insurance Committee, and the Senate Health and Human Services Committee. The Director of the Office of Health Equity or their designee serves as an ex officio nonvoting member. Initial appointments will be made by October 1, 2022.

Committee members asked questions of the sponsors.

Annissa Reed, representing the National Organization for Rare Disorders, testified in support of the bill.

Dr. Ted Maynard, representing the Colorado Chapter of the American Academy of Pediatrics, testified in support of the bill.

Ms. Siri Vaeth, representing the Cystic Fibrosis Research Institute, testified in support of the bill.

Katherine Connolly,
representing the Chronic Care Collaborative, testified in support of the
bill.



Pete Kirchhof, representing self, testified in support of the bill.



Mr. Aidan Wiemer, representing self, testified in a neutral position on
the bill.



Erica Wright, representing Children's Hospital Colorado, testified to amend
the bill.



Committee members asked questions of the panel.

 

Additional written testimony was submitted to the committee (Attachment
D).



Committee members discussed a handout (Attachment E).

Senator Ginal and Senator Simpson introduced and explained amendment L.001 (Attachment F).

Committee members provided closing remarks.