Minnesota 2025-2026 Regular Session

Minnesota Senate Bill SF1069 Compare Versions

Only one version of the bill is available at this time.

Old	New	Differences
1	1	1.1 A bill for an act
2	2	1.2 relating to health; modifying membership of the Rare Disease Advisory Council;
3	3	1.3 appropriating money; amending Minnesota Statutes 2024, section 256.4835,
4	4	1.4 subdivisions 2, 4, by adding subdivisions.
5	5	1.5BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:
6	6	1.6 Section 1. Minnesota Statutes 2024, section 256.4835, subdivision 2, is amended to read:
7	7	1.7 Subd. 2.Public membership.(a) The advisory council shall consist of at least 17 public
8	8	1.8members who reflect statewide representation. Except for initial public members, public
9	9	1.9members are appointed by the governor according to paragraph (b). Four members of the
10	10	1.10legislature are appointed according to paragraph (c).
11	11	1.11 (b) The governor shall appoint at least the following public members according to section
12	12	1.1215.0597:
13	13	1.13 (1) three physicians licensed and practicing in the state with experience researching,
14	14	1.14diagnosing, or treating rare diseases, including one specializing in pediatrics;
15	15	1.15 (2) one registered nurse or advanced practice registered nurse licensed and practicing
16	16	1.16in the state with experience treating rare diseases;
17	17	1.17 (3) at least two hospital administrators, or their designees, from hospitals in the state
18	18	1.18that provide care to persons diagnosed with a rare disease. One administrator or designee
19	19	1.19appointed under this clause must represent a hospital in which the scope of service focuses
20	20	1.20on rare diseases of pediatric patients;
21	21	1Section 1.
22	22	25-02682 as introduced01/24/25 REVISOR DTT/AD
23	23	SENATE
24	24	STATE OF MINNESOTA
25	25	S.F. No. 1069NINETY-FOURTH SESSION
26	26	(SENATE AUTHORS: CARLSON)
27	27	OFFICIAL STATUSD-PGDATE
28	28	Introduction and first reading02/06/2025
29	29	Referred to Human Services 2.1 (4) three persons age 18 or older who either have a rare disease or are a caregiver of a
30	30	2.2person with a rare disease. One person appointed under this clause must reside in rural
31	31	2.3Minnesota;
32	32	2.4 (5) a representative of a rare disease patient organization that operates in the state;
33	33	2.5 (6) a social worker with experience providing services to persons diagnosed with a rare
34	34	2.6disease;
35	35	2.7 (7) a pharmacist with experience with drugs used to treat rare diseases;
36	36	2.8 (8) a dentist licensed and practicing in the state with experience treating rare diseases;
37	37	2.9 (9) a representative of the biotechnology industry;
38	38	2.10 (10) a representative of health plan companies;
39	39	2.11 (11) a medical researcher with experience conducting research on rare diseases;
40	40	2.12 (12) a genetic counselor with experience providing services to persons diagnosed with
41	41	2.13a rare disease or caregivers of those persons; and
42	42	2.14 (13) representatives with other areas of expertise as identified by the advisory council.
43	43	2.15 (c) The advisory council shall include two members of the senate, one appointed by the
44	44	2.16majority leader and one appointed by the minority leader; and two members of the house
45	45	2.17of representatives, one appointed by the speaker of the house and one appointed by the
46	46	2.18minority leader. Members appointed under this paragraph serve until their successors are
47	47	2.19appointed.
48	48	2.20 (d) The commissioner of health or a designee, a representative of Mayo Medical School,
49	49	2.21and a representative of the University of Minnesota Medical School shall serve as ex officio,
50	50	2.22nonvoting members of the advisory council.
51	51	2.23 (e) (c) Public members appointed according to paragraph (b) shall serve for a term of
52	52	2.24three years, except the initial members appointed according to paragraph (b). Public members
53	53	2.25appointed according to paragraph (b) shall serve until their successors have been appointed.
54	54	2.26 (f) (d) Public members may be reappointed for up to two full additional terms according
55	55	2.27to the advisory council's operating procedures.
56	56	2.28 (g) (e) Public members may be removed as provided in section 15.059, subdivision 4.
57	57	2.29 (h) (f) Public members serve without compensation, but may have expenses reimbursed
58	58	2.30as provided in section 15.059, subdivision 3. Legislative members may receive per diem
59	59	2.31according to the rules of their respective bodies.
60	60	2Section 1.
61	61	25-02682 as introduced01/24/25 REVISOR DTT/AD 3.1 Sec. 2. Minnesota Statutes 2024, section 256.4835, is amended by adding a subdivision
62	62	3.2to read:
63	63	3.3 Subd. 2a.Legislative membership.The advisory council shall include two members
64	64	3.4of the senate, one appointed by the majority leader and one appointed by the minority leader;
65	65	3.5and two members of the house of representatives, one appointed by the speaker of the house
66	66	3.6and one appointed by the minority leader. Legislative members appointed under this
67	67	3.7subdivision serve until their successors are appointed. Legislative members may receive
68	68	3.8per diems according to the rules of their respective bodies.
69	69	3.9 Sec. 3. Minnesota Statutes 2024, section 256.4835, is amended by adding a subdivision
70	70	3.10to read:
71	71	3.11 Subd. 2b.Ex officio membership.The commissioner of health or a designee, a
72	72	3.12representative of Mayo Medical School, and a representative of the University of Minnesota
73	73	3.13Medical School shall serve as ex officio, nonvoting members of the advisory council.
74	74	3.14 Sec. 4. Minnesota Statutes 2024, section 256.4835, is amended by adding a subdivision
75	75	3.15to read:
76	76	3.16 Subd. 2c.Ad hoc membership.(a) The advisory council may include up to ... ad hoc
77	77	3.17members appointed by the executive committee to provide additional expertise while the
78	78	3.18advisory council undertakes a particular project. The initial term of appointment of an ad
79	79	3.19hoc member shall be for one year. Ad hoc members may be reappointed for up to two
80	80	3.20additional one-year terms according to the advisory council's operating procedures.
81	81	3.21 (b) Ad hoc members may be removed by the executive committee as provided in section
82	82	3.2215.059, subdivision 4.
83	83	3.23 (c) An ad hoc member may not serve on the executive committee of the advisory council
84	84	3.24and may not vote in the election of a chairperson or other officers nor on any matter related
85	85	3.25to the governance of the advisory council, including the appointment of an executive director.
86	86	3.26 (d) Ad hoc members serve without compensation, but may have expenses reimbursed
87	87	3.27as provided in section 15.059, subdivision 3.
88	88	3.28 Sec. 5. Minnesota Statutes 2024, section 256.4835, subdivision 4, is amended to read:
89	89	3.29 Subd. 4.Duties.(a) The advisory council's duties may include, but are not limited to:
90	90	3.30 (1) in conjunction with the state's medical schools, the state's schools of public health,
91	91	3.31and hospitals in the state that provide care to persons diagnosed with a rare disease,
92	92	3Sec. 5.
93	93	25-02682 as introduced01/24/25 REVISOR DTT/AD 4.1developing resources or recommendations relating to quality of and access to treatment and
94	94	4.2services in the state for persons with a rare disease, including but not limited to:
95	95	4.3 (i) a list of existing, publicly accessible resources on research, diagnosis, treatment, and
96	96	4.4education relating to rare diseases;
97	97	4.5 (ii) identifying best practices for rare disease care implemented in other states, at the
98	98	4.6national level, and at the international level that will improve rare disease care in the state
99	99	4.7and seeking opportunities to partner with similar organizations in other states and countries;
100	100	4.8 (iii) identifying and addressing problems faced by patients with a rare disease when
101	101	4.9changing health plans, including recommendations on how to remove obstacles faced by
102	102	4.10these patients to finding a new health plan and how to improve the ease and speed of finding
103	103	4.11a new health plan that meets the needs of patients with a rare disease;
104	104	4.12 (iv) identifying and addressing barriers faced by patients with a rare disease to obtaining
105	105	4.13care, caused by prior authorization requirements in private and public health plans; and
106	106	4.14 (v) identifying, recommending, and implementing best practices to ensure health care
107	107	4.15providers are adequately informed of the most effective strategies for recognizing and
108	108	4.16treating rare diseases;
109	109	4.17 (2) advising, consulting, and cooperating with the Department of Health, including the
110	110	4.18Advisory Committee on Heritable and Congenital Disorders; the Department of Human
111	111	4.19Services, including the Drug Utilization Review Board and the Drug Formulary Committee;
112	112	4.20and other agencies of state government in developing recommendations, information, and
113	113	4.21programs for the public and the health care community relating to diagnosis, treatment, and
114	114	4.22awareness of rare diseases;
115	115	4.23 (3) advising on policy issues and advancing policy initiatives at the state and federal
116	116	4.24levels; and
117	117	4.25 (4) receiving funds and issuing grants.
118	118	4.26 (b) The advisory council shall collect additional topic areas for study and evaluation
119	119	4.27from the general public. In order for the advisory council to study and evaluate a topic, the
120	120	4.28topic must be approved for study and evaluation by the advisory council.
121	121	4.29 (c) Legislative members and ad hoc members may not deliberate about or vote on
122	122	4.30decisions related to the issuance of grants of state money.
123	123	4Sec. 5.
124	124	25-02682 as introduced01/24/25 REVISOR DTT/AD 5.1 Sec. 6. APPROPRIATION.
125	125	5.2 $....... in fiscal year 2026 and $....... in fiscal year 2027 are appropriated from the general
126	126	5.3fund to the Rare Disease Advisory Council to study sustainable reimbursement models for
127	127	5.4gene therapies to treat rare diseases and to issue recommendations to the legislature, payers,
128	128	5.5hospitals, and manufacturers. The general fund base for this appropriation is $....... in fiscal
129	129	5.6year 2028, $....... in fiscal year 2029, and $....... in fiscal year 2030.
130	130	5Sec. 6.
131	131	25-02682 as introduced01/24/25 REVISOR DTT/AD