| Summary |
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 bill includes activities that must be carried out by the council
and powers of the council. The activities include, in part:
•
Convening public hearings 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.
|
