Representative Lee B. Perry proposes the following substitute bill:


1     
RARE DISEASE ADVISORY COUNCIL

2     
2019 GENERAL SESSION

3     
STATE OF UTAH

4     
Chief Sponsor: Lee B. Perry

5     
Senate Sponsor: Luz Escamilla

6     Cosponsors:
7     Stewart E. Barlow
Jennifer Dailey-Provost
Brad M. Daw
Steve Eliason
Marsha Judkins
8     

9     LONG TITLE
10     General Description:
11          This bill creates the Rare Disease Advisory Council within the Department of Health.
12     Highlighted Provisions:
13          This bill:
14          ▸     defines terms;
15          ▸     creates the Rare Disease Advisory Council within the Department of Health;
16          ▸     describes the composition and duties of the council; and
17          ▸     establishes a review and sunset date for the council.
18     Money Appropriated in this Bill:
19          None
20     Other Special Clauses:
21          None
22     Utah Code Sections Affected:
23     AMENDS:
24          63I-1-226, as last amended by Laws of Utah 2018, Third Special Session, Chapter 1
25     ENACTS:
26          26-1-41, Utah Code Annotated 1953
27     

28     Be it enacted by the Legislature of the state of Utah:
29          Section 1. Section 26-1-41 is enacted to read:
30          26-1-41. Rare Disease Advisory Council -- Creation -- Purpose and duties.
31          (1) As used in this section:
32          (a) "Council" means the Rare Disease Advisory Council created in this section.
33          (b) "Rare disease" means a disease that affects fewer than 200,000 individuals in the
34     United States.
35          (2) There is created within the department, in coordination with the University of Utah,
36     the Rare Disease Advisory Council.
37          (3) The purpose of the council is to:
38          (a) advise the Legislature and state agencies on providing services and care to
39     individuals with a rare disease;
40          (b) make recommendations to the Legislature and state agencies on improving access
41     to treatment and services provided to individuals with a rare disease; and
42          (c) identify best practices to improve the care and treatment of individuals in the state
43     with a rare disease.
44          (4) The council shall:
45          (a) meet at least two times in each calendar year; and
46          (b) be composed of:
47          (i) members appointed by the executive director; and
48          (ii) at least the following individuals:
49          (A) a representative from the department;
50          (B) researchers and physicians who specialize in rare diseases, including at least one
51     representative from the University of Utah;
52          (C) two individuals who have a rare disease or are the parent or caregiver of an
53     individual with a rare disease; and
54          (D) two representatives from rare disease patient organizations that operate in the state.
55          (5) (a) The department shall provide staff and other administrative support to the
56     council.
57          (b) A member of the council may not receive compensation or benefits for the
58     member's service, but, at the director's discretion, may receive per diem and travel expenses in
59     accordance with Sections 63A-3-106 and 63A-3-107.
60          (6) Before November 30, 2020, and before November 30 of every even-numbered year
61     thereafter, the council shall report to the Health and Human Services Interim Committee on:
62          (a) the activities of the council; and
63          (b) recommendations and best practices regarding the ongoing needs of individuals in
64     the state with a rare disease.
65          Section 2. Section 63I-1-226 is amended to read:
66          63I-1-226. Repeal dates, Title 26.
67          (1) Section 26-1-40 is repealed July 1, 2019.
68          (2) Section 26-1-41 is repealed July 1, 2025.
69          [(2)] (3) Title 26, Chapter 9f, Utah Digital Health Service Commission Act, is repealed
70     July 1, 2025.
71          [(3)] (4) Section 26-10-11 is repealed July 1, 2020.
72          [(4)] (5) Subsection 26-18-417(3) is repealed July 1, 2020.
73          [(5)] (6) Title 26, Chapter 33a, Utah Health Data Authority Act, is repealed July 1,
74     2024.
75          [(6)] (7) Title 26, Chapter 36b, Inpatient Hospital Assessment Act, is repealed July 1,
76     2024.
77          [(7)] (8) Title 26, Chapter 36c, Medicaid Expansion Hospital Assessment Act, is
78     repealed July 1, 2024.
79          [(8)] (9) Title 26, Chapter 36d, Hospital Provider Assessment Act, is repealed July 1,
80     2019.
81          [(9) Title 26, Chapter 56, Hemp Extract Registration Act, is repealed January 1, 2019.]
82          (10) Title 26, Chapter 63, Nurse Home Visiting Pay-for-Success Program, is repealed
83     July 1, 2026.