1     
RARE DISEASE ADVISORY COUNCIL

2     
2020 GENERAL SESSION

3     
STATE OF UTAH

4     
Chief Sponsor: Lee B. Perry

5     
Senate Sponsor: Luz Escamilla

6     

7     LONG TITLE
8     General Description:
9          This bill creates the Rare Disease Advisory Council within the Department of Health.
10     Highlighted Provisions:
11          This bill:
12          ▸     defines terms;
13          ▸     creates a grant to convene a Rare Disease Advisory Council;
14          ▸     describes the composition and duties of the council;
15          ▸     establishes a review and sunset date for the grant; and
16          ▸     provides an appropriation.
17     Money Appropriated in this Bill:
18          This bill appropriates in fiscal year 2021:
19          ▸     to the Department of Health - Disease Control and Prevention, as an ongoing
20     appropriation:
21               •     from the General Fund, $9,500.
22     Other Special Clauses:
23          None
24     Utah Code Sections Affected:
25     AMENDS:
26          63I-1-226, as last amended by Laws of Utah 2019, Chapters 67, 136, 246, 289, 455 and
27     last amended by Coordination Clause, Laws of Utah 2019, Chapter 246
28     ENACTS:

29          26-1-41, Utah Code Annotated 1953
30     

31     Be it enacted by the Legislature of the state of Utah:
32          Section 1. Section 26-1-41 is enacted to read:
33          26-1-41. Rare Disease Advisory Council Grant Program -- Creation -- Reporting.
34          (1) As used in this section:
35          (a) "Council" means the Rare Disease Advisory Council described in Subsection (3).
36          (b) "Grantee" means the recipient of a grant under this section to operate the program.
37          (c) "Rare disease" means a disease that affects fewer than 200,000 individuals in the
38     United States.
39          (2) (a) Within legislative appropriations, the department shall issue a request for
40     proposals for a grant to administer the provisions of this section.
41          (b) The department may issue a grant under this section if the grantee agrees to:
42          (i) convene the council in accordance with Subsection (3);
43          (ii) provide staff and other administrative support to the council; and
44          (iii) in coordination with the department, report to the Legislature in accordance with
45     Subsection (4).
46          (3) The Rare Disease Advisory Council convened by the grantee shall:
47          (a) advise the Legislature and state agencies on providing services and care to
48     individuals with a rare disease;
49          (b) make recommendations to the Legislature and state agencies on improving access
50     to treatment and services provided to individuals with a rare disease;
51          (c) identify best practices to improve the care and treatment of individuals in the state
52     with a rare disease;
53          (d) meet at least two times in each calendar year; and
54          (e) be composed of members identified by the department, including at least the
55     following individuals:

56          (i) a representative from the department;
57          (ii) researchers and physicians who specialize in rare diseases, including at least one
58     representative from the University of Utah;
59          (iii) two individuals who have a rare disease or are the parent or caregiver of an
60     individual with a rare disease; and
61          (iv) two representatives from one or more rare disease patient organizations that
62     operate in the state.
63          (4) Before November 30, 2021, and before November 30 of every odd-numbered year
64     thereafter, the department shall report to the Health and Human Services Interim Committee
65     on:
66          (a) the activities of the grantee and the council; and
67          (b) recommendations and best practices regarding the ongoing needs of individuals in
68     the state with a rare disease.
69          Section 2. Section 63I-1-226 is amended to read:
70          63I-1-226. Repeal dates, Title 26.
71          (1) Section 26-1-40 is repealed July 1, 2022.
72          (2) Section 26-1-41 is repealed July 1, 2026.
73          [(2)] (3) Title 26, Chapter 9f, Utah Digital Health Service Commission Act, is repealed
74     July 1, 2025.
75          [(3)] (4) Section 26-10-11 is repealed July 1, 2020.
76          [(4)] (5) Subsection 26-18-417(3) is repealed July 1, 2020.
77          [(5)] (6) Subsection 26-18-418(2), the language that states "and the Mental Health
78     Crisis Line Commission created in Section 63C-18-202" is repealed July 1, 2023.
79          [(6) Section 26-18-419.1 is repealed December 31, 2019.]
80          (7) Title 26, Chapter 33a, Utah Health Data Authority Act, is repealed July 1, 2024.
81          (8) Title 26, Chapter 36b, Inpatient Hospital Assessment Act, is repealed July 1, 2024.
82          (9) Title 26, Chapter 36c, Medicaid Expansion Hospital Assessment Act, is repealed

83     July 1, 2024.
84          (10) Title 26, Chapter 36d, Hospital Provider Assessment Act, is repealed July 1, 2024.
85          (11) Title 26, Chapter 54, Spinal Cord and Brain Injury Rehabilitation Fund and
86     Pediatric Neuro-Rehabilitation Fund, is repealed January 1, 2023.
87          (12) Subsection 26-61a-108(2)(e)(i), related to the Native American Legislative
88     Liaison Committee, is repealed July 1, 2022.
89          (13) Title 26, Chapter 63, Nurse Home Visiting Pay-for-Success Program, is repealed
90     July 1, 2026.
91          Section 3. Appropriation.
92          The following sums of money are appropriated for the fiscal year beginning July 1,
93     2020, and ending June 30, 2021. These are additions to amounts previously appropriated for
94     fiscal year 2021. Under the terms and conditions of Title 63J, Chapter 1, Budgetary Procedures
95     Act, the Legislature appropriates the following sums of money from the funds or accounts
96     indicated for the use and support of the government of the state of Utah.
97     ITEM 1
98          To Department of Health - Disease Control and Prevention
99               From General Fund, Ongoing
$9,500

100               Schedule of Programs:
101                    Rare Disease Advisory Council Grant Program     $9,500
102          The Legislature intends that the appropriations provided under this item be used to fund
103     the Rare Disease Advisory Council Grant Program created in Section 26-1-41.