Rep. Norm Thurston — Voting Record

Bill

Number

H.B. 211 Second Substitute (2019GS)

Sponsor

Rep. Perry, L.

Final action

House/ filed 3/14/2019

Outcome

Failed / filed without passage

Summary

What it does

• This bill:
• defines terms;
• creates the Rare Disease Advisory Council within the Department of Health; and
• describes the composition and duties of the council.

Every vote on this bill

Bill text

RARE DISEASE ADVISORY COUNCIL
GENERAL SESSION
STATE OF UTAH
Chief Sponsor: Lee B. Perry
Senate Sponsor: 
 Luz Escamilla
LONG TITLE
General Description:
This bill creates the Rare Disease Advisory Council within the Department of Health.
Highlighted Provisions:
This bill:
▸ defines terms;
▸ creates the Rare Disease Advisory Council within the Department of Health; and
▸ describes the composition and duties of the council.
Money Appropriated in this Bill:
None
Other Special Clauses:
None
Utah Code Sections Affected:
ENACTS:
26-1-41
, Utah Code Annotated 1953
Be it enacted by the Legislature of the state of Utah:
Section 1. Section 
26-1-41
 is enacted to read:
 26-1-41.
Rare Disease Advisory Council -- Creation -- Purpose and duties.
(1) As used in this section:
(a) "Council" means the Rare Disease Advisory Council created in this section.
(b) "Rare disease" means a disease that affects fewer than 200,000 individuals in the
United States.
(2) There is created within the department the Rare Disease Advisory Council.
(3) The purpose of the council is to:
(a) advise the Legislature and state agencies on providing services and care to
individuals with a rare disease;
(b) make recommendations to the Legislature and state agencies on improving access
to treatment and services provided to individuals with a rare disease;
(c) coordinate with other organizations within the state that focus on rare diseases,
including medical schools, schools of public health, and hospitals, to encourage greater
cooperation regarding the research, diagnosis, and treatment of rare diseases; and
(d) identify best practices to improve the care and treatment of individuals in the state
with a rare disease.
(4) The council shall:
(a) meet at least two times in each calendar year; and
(b) be composed of:
(i) members appointed by the director; and
(ii) at least the following individuals:
(A) a representative from the department;
(B) researchers and health care practitioners who specialize in rare diseases;
(C) two individuals who are the parent or caregiver of an individual with a rare disease;
and
(D) two representatives from rare disease patient organizations that operate in the state.
(5) (a) The department shall provide staff and other administrative support to the
council.
(b) A member of the council may not receive compensation or benefits for the
member's service, but, at the director's discretion, may receive per diem and travel expenses in
accordance with Sections 
63A-3-106
 and 
63A-3-107
.
(6) Before November 30, 2020, and before November 30 of every even-numbered year
thereafter, the council shall report to the Health and Human Services Interim Committee on:
(a) the activities of the council; and
(b) recommendations and best practices regarding the ongoing needs of individuals in
the state with a rare disease.