(1) The council shall conduct the following activities to benefit rare disease patients in Colorado: (a) Convene public meetings, make inquiries, and solicit comments from Coloradans to assist the council with a survey of the needs of rare disease patients, caregivers, and providers in the state, to be completed within eighteen months after the council is established; (b) Consult with experts on rare diseases to develop policy recommendations to improve patient access to and quality of rare disease specialists, affordable and comprehensive health- care coverage, better access to clinical trials, relevant diagnostics, and timely treatment; (c) Educate and make recommendations to state agencies and to health insurers providing health benefit plans to persons with rare diseases on the impact of imposing prior authorization, cost sharing, tiering, or other utilization management procedures on the provision of treatment and care for patients; (d) Research and identify best practices to ensure continuity of care for rare disease patients transitioning from pediatric care to adult care; (e) Establish a Colorado rare disease council web page or website, housed on its own website or as part of a host website, and publish a list of existing, publicly accessible resources on research, diagnosis, treatment, and educational materials for health-care providers and patients relating to rare diseases; and (f) Prepare and submit a report annually to the governor and to specified committees of the general assembly pursuant to section 25-1-1509. (2) Prior to publishing any final recommendations of the council, the council shall provide an opportunity for public comment on draft recommendations. (3) In addition to any other council activities, the council may: (a) Adopt rules of procedure for the council that it deems necessary to facilitate the orderly conduct of its business; (b) Establish task forces or committees of its members and nonmembers to assist in the performance of the council's duties; (c) Accept written or oral input from the public or any relevant source; (d) Publicize its findings and recommendations concerning the needs of individuals with rare diseases living in Colorado and advocate on behalf of the council for its recommended actions; (e) Seek, accept, and expend gifts, grants, and donations for purposes of carrying out the duties of the council; and (f) Offer input to the Colorado prescription drug affordability review board, as described in section 10-16-1406 (2)(e) and (4)(h)(III).
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