Create Colorado Rare Disease Advisory Council

The act creates the Colorado rare disease advisory council (council) in the department of public health and environment (department) to inform state agencies, the public, and the legislature about rare diseases and make recommendations concerning the needs of Coloradans living with rare diseases and their medical providers and caregivers.

The council consists of 12 voting members and one nonvoting member representing the office of health equity in the department. The council's 12 voting members include, in part, a researcher, a geneticist, a physician, a professional nurse, a pharmacist, persons living with a rare disease, the parent of a child diagnosed with a rare disease, and representatives of the biotechnology or pharmaceutical industry and of a health insurer. Members of the council are appointed by the speaker and minority leader of the house of representatives and the president and minority leader of the senate. The appointing authorities shall make initial appointments to the council by October 1, 2022.

The act specifies the powers of the council and the activities that the council must perform. The activities include, in part:

• Convening public meetings and soliciting public comment to assist with a state survey of the needs of individuals in the state living with rare diseases;
• Consulting with experts and developing policy recommendations to improve access to rare disease specialists, clinical trials, timely treatment, and affordable and comprehensive health care;
• Educating and making recommendations to state agencies and health insurers concerning issues relating to utilization management procedures for treatment of patients with rare diseases;
• Researching and identifying best practices regarding continuity of care for patients who transition from pediatric to adult care; and
• Establishing a publicly accessible web page or website to include research, diagnosis, treatment, and other educational materials for providers and patients relating to rare diseases.

Unless the council determines that a facilitator is not needed, the council shall contract with a facilitator to provide assistance to the council in carrying out the council's activities. The facilitator's activities may include, in part, conducting meetings, organizing the work of the council, conducting research on issues addressed by the council, conducting public outreach and soliciting expert and public feedback, and publicizing council recommendations.

The council and the facilitator may seek, accept, and expend gifts, grants, and donations for the council's activities. The general assembly may appropriate money for the council.

The act includes provisions for council meetings, including the number of meetings, notice to the public, and requirements regarding open meetings and public access to council records.

The council shall submit an initial report 12 months after the council is established and then report annually to the governor and the health committees of the general assembly concerning the council's activities, funding, and recommendations addressing the needs of people living with rare diseases.

The council repeals September 1, 2032, unless extended through the sunset process.

For the 2022-23 state fiscal year, the act appropriates $80,567 from the general fund to the department for administration and support to the council. The appropriation is based on the assumption that the department will require and additional 0.4 FTE.

(Note: This summary applies to this bill as enacted.)