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Bill Detail: SB22-186

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Title Create Colorado Rare Disease Advisory Council
Status Governor Signed (06/08/2022)
Bill Subjects
  • Health Care & Health Insurance
  • Public Health
House Sponsors H. McKean (R)
Senate Sponsors J. Ginal (D)
C. Simpson (R)
House Committee Health and Insurance
Senate Committee Health and Human Services
Date Introduced 03/29/2022

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

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
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
  • 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
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

Committee Reports
with Amendments
Full Text
Full Text of Bill (pdf) (most recent)
Fiscal Notes Fiscal Notes (05/04/2022) (most recent)  
Additional Bill Documents Bill Documents
  • Past bill versions
  • Past fiscal notes
  • Committee activity and documents
  • Bill History
Lobbyists Lobbyists
Votes House and Senate Votes
Vote Totals Vote Totals by Party
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