The bill 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 pharmacist, and persons living with rare diseases. Members of the council are appointed by the
chairs of the general assembly's health committees the speaker and minority leader of the house of representatives and the president and minority leader of the senate .
The bill includes activities that must be carried out by the council and powers of the council. The activities include, in part:
- Convening public
hearingsmeetings and soliciting public comment to assist with a state survey of the needs of individuals in the state living with rare diseases;
- 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;
Evaluating and making recommendations concerning newborn screening programs;
- Researching and sharing best practices regarding continuity of care from patients transitioning 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.
The bill authorizes the department to provide assistance to the council.
The council shall contract with a facilitator to provide assistance to the council in carrying out the council's activities, including, in part, conducting meetings, organizing the work of the council, conducting research on issues addressed by the council, conducting public outreach and soliciting 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 bill 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 must 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 in 10 years unless extended through the sunset process.
(Note: Italicized words indicate new material added to the original summary; dashes through words indicate deletions from the original summary.)
(Note: This summary applies to the reengrossed version of this bill as introduced in the second house.)