Rep. Norm Thurston — Voting Record

Bill

Number

H.B. 106 Second Substitute (2020GS)

Sponsor

Rep. Perry, L.

Final action

Governor Signed 3/28/2020

Outcome

Became law — signed by Gov. Gary R. Herbert

Summary

What it does

• This bill:
• defines terms;
• creates a grant to convene a Rare Disease Advisory Council;
• describes the composition and duties of the council;
• establishes a review and sunset date for the grant; and
• provides an appropriation.

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 a grant to convene a Rare Disease Advisory Council;
▸ describes the composition and duties of the council;
▸ establishes a review and sunset date for the grant; and
▸ provides an appropriation.
Money Appropriated in this Bill:
This bill appropriates in fiscal year 2021:
▸ to the Department of Health - Disease Control and Prevention, as an ongoing
appropriation:
• from the General Fund, $9,500.
Other Special Clauses:
None
Utah Code Sections Affected:
AMENDS:
63I-1-226
, as last amended by Laws of Utah 2019, Chapters 67, 136, 246, 289, 455 and
last amended by Coordination Clause, Laws of Utah 2019, Chapter 246
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 Grant Program -- Creation -- Reporting.
(1) As used in this section:
(a) "Council" means the Rare Disease Advisory Council described in Subsection (3).
(b) "Grantee" means the recipient of a grant under this section to operate the program.
(c) "Rare disease" means a disease that affects fewer than 200,000 individuals in the
United States.
(2) (a) Within legislative appropriations, the department shall issue a request for
proposals for a grant to administer the provisions of this section.
(b) The department may issue a grant under this section if the grantee agrees to:
(i) convene the council in accordance with Subsection (3);
(ii) provide staff and other administrative support to the council; and
(iii) in coordination with the department, report to the Legislature in accordance with
Subsection (4).
(3) The Rare Disease Advisory Council convened by the grantee shall:
(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) identify best practices to improve the care and treatment of individuals in the state
with a rare disease;
(d) meet at least two times in each calendar year; and
(e) be composed of members identified by the department, including at least the
following individuals:
(i) a representative from the department;
(ii) researchers and physicians who specialize in rare diseases, including at least one
representative from the University of Utah;
(iii) two individuals who have a rare disease or are the parent or caregiver of an
individual with a rare disease; and
(iv) two representatives from one or more rare disease patient organizations that
operate in the state.
(4) Before November 30, 2021, and before November 30 of every odd-numbered year
thereafter, the department shall report to the Health and Human Services Interim Committee
on:
(a) the activities of the grantee and the council; and
(b) recommendations and best practices regarding the ongoing needs of individuals in
the state with a rare disease.
Section 2. Section 
63I-1-226
 is amended to read:
63I-1-226.
Repeal dates, Title 26.
(1) Section 
26-1-40
 is repealed July 1, 2022.
(2) Section 
26-1-41
 is repealed July 1, 2026.
[
(2)
] 
(3)
 Title 26, Chapter 9f, Utah Digital Health Service Commission Act, is repealed
July 1, 2025.
[
(3)
] 
(4)
 Section 
26-10-11
 is repealed July 1, 2020.
[
(4)
] 
(5)
 Subsection 
26-18-417
(3) is repealed July 1, 2020.
[
(5)
] 
(6)
 Subsection 
26-18-418
(2), the language that states "and the Mental Health
Crisis Line Commission created in Section 
63C-18-202
" is repealed July 1, 2023.
[
(6) Section 
26-18-419.1
 is repealed December 31, 2019.
]
(7) Title 26, Chapter 33a, Utah Health Data Authority Act, is repealed July 1, 2024.
(8) Title 26, Chapter 36b, Inpatient Hospital Assessment Act, is repealed July 1, 2024.
(9) Title 26, Chapter 36c, Medicaid Expansion Hospital Assessment Act, is repealed
July 1, 2024.
(10) Title 26, Chapter 36d, Hospital Provider Assessment Act, is repealed July 1, 2024.
(11) Title 26, Chapter 54, Spinal Cord and Brain Injury Rehabilitation Fund and
Pediatric Neuro-Rehabilitation Fund, is repealed January 1, 2023.
(12) Subsection 
26-61a-108
(2)(e)(i), related to the Native American Legislative
Liaison Committee, is repealed July 1, 2022.
(13) Title 26, Chapter 63, Nurse Home Visiting Pay-for-Success Program, is repealed
July 1, 2026.
Section 3. 
Appropriation.
The following sums of money are appropriated for the fiscal year beginning July 1,
2020, and ending June 30, 2021. These are additions to amounts previously appropriated for
fiscal year 2021. Under the terms and conditions of Title 63J, Chapter 1, Budgetary Procedures
Act, the Legislature appropriates the following sums of money from the funds or accounts
indicated for the use and support of the government of the state of Utah.
ITEM 1
To Department of Health - Disease Control and Prevention
 From General Fund, Ongoing
$9,500
Schedule of Programs:
Rare Disease Advisory Council Grant Program $9,500
The Legislature intends that the appropriations provided under this item be used to fund
the Rare Disease Advisory Council Grant Program created in Section 
26-1-41
.