SB 22-186

  • Colorado Senate Bill
  • 2022 Regular Session
  • Introduced in Senate May 03, 2022
  • Passed Senate May 03, 2022
  • Passed House May 11, 2022
  • Signed by Governor Jun 08, 2022

Create Colorado Rare Disease Advisory Council

Abstract

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.)

Bill Sponsors (4)

Votes


May 11, 2022

May 03, 2022

Actions


Jun 08, 2022

Office of the Governor

Governor Signed

May 20, 2022

Office of the Governor

Sent to the Governor

House

Signed by the Speaker of the House

Senate

Signed by the President of the Senate

May 11, 2022

House

House Third Reading Passed - No Amendments

May 10, 2022

House

House Second Reading Special Order - Passed - No Amendments

May 09, 2022

House

House Second Reading Special Order - Laid Over Daily - No Amendments

House

House Committee on Appropriations Refer Unamended to House Committee of the Whole

  • Committee-Passage
  • Referral-Committee
Appropriations House Committee of the Whole

May 04, 2022

House

House Committee on Health & Insurance Refer Unamended to Appropriations

  • Referral-Committee
Health & Insurance Appropriations

May 03, 2022

House

Introduced In House - Assigned to Health & Insurance

  • Introduction
Health & Insurance

Senate

Senate Third Reading Passed - No Amendments

May 02, 2022

Senate

Senate Second Reading Special Order - Passed with Amendments - Committee

Senate

Senate Committee on Appropriations Refer Amended to Senate Committee of the Whole

  • Committee-Passage
  • Referral-Committee
Senate Committee of the Whole Appropriations

Apr 18, 2022

Senate

Senate Committee on Health & Human Services Refer Amended to Appropriations

  • Referral-Committee
Appropriations Health & Human Services

Mar 29, 2022

Senate

Introduced In Senate - Assigned to Health & Human Services

  • Introduction
Health & Human Services

Bill Text

Bill Text Versions Format
Signed Act (06/08/2022) PDF
Final Act (05/20/2022) PDF
Rerevised (05/11/2022) PDF
Revised (05/10/2022) PDF
Reengrossed (05/03/2022) PDF
Engrossed (05/02/2022) PDF
Introduced (03/29/2022) PDF
PA2 (05/02/2022) PDF
PA1 (04/19/2022) PDF
Committee Amendment PDF

Related Documents

Document Format
Fiscal Note SA1 (05/01/2022) PDF
Fiscal Note SA2 (05/09/2022) PDF
Fiscal Note FN1 (04/11/2022) PDF
Fiscal Note FN2 (05/04/2022) PDF

Sources

Data on Open States is updated periodically throughout the day from the official website of the Colorado General Assembly.

If you notice any inconsistencies with these official sources, feel free to file an issue.