Rare Disease Task Force; establish within the Mississippi Rare Disease Advisory Council.

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To: Public Health and
Welfare
MISSISSIPPI LEGISLATURE REGULAR SESSION 2026

By: Senator(s) Bryan, Gillespie Isom, Pope,
Simmons (13th)

SENATE BILL NO. 2474
(As Sent to Governor)

AN ACT TO ESTABLISH THE RARE DISEASE TASK FORCE WITHIN THE 1
MISSISSIPPI RARE DISEASE ADVISORY COUNCIL; TO PROVIDE THAT THE 2
PURPOSE OF THE TASK FORCE IS TO IDENTIFY GAPS IN CARE, EVALUATE 3
FUNDING AND INSURANCE COVERAGE PRACTICES, ADVISE POLICYMAKERS ON 4
EVIDENCE-BASED SOLUTIONS, AND ENSURE FAIR, TIMELY, AND EQUITABLE 5
ACCESS TO RARE DISEASE THERAPIES IN THIS STATE; TO PROVIDE FOR THE 6
MEMBERSHIP, POWERS AND DUTIES OF THE TASK FORCE; TO REQUIRE THE 7
TASK FORCE TO MAKE AN ANNUAL REPORT TO CERTAIN PUBLIC OFFICIALS; 8
TO AMEND SECTION 1 OF HOUSE BILL NO. 1622, 2026 REGULAR SESSION, 9
TO REPLACE CERTAIN INSTANCES OF THE TERM "LICENSE" WITH 10
"EXEMPTION" FOR THE SAKE OF ADMINISTRATIVE EFFICIENCY; AND FOR 11
RELATED PURPOSES. 12
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MISSISSIPPI: 13
SECTION 1. Legislative findings and purpose. (1) The 14
Legislature finds that rare diseases collectively affect a 15
substantial number of residents of the State of Mississippi and 16
frequently result in delayed diagnosis, limited treatment options, 17
fragmented care delivery, and significant financial burdens for 18
patients and their families. The Legislature further finds that 19
certain insurance coverage practices, including the use of 20
alternative funding programs, may improperly limit or delay access 21
to medically necessary therapies for individuals living with rare 22
diseases. 23
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(2) The purpose of this act is to establish a coordinated, 24
expert-driven Rare Disease Task Force to identify gaps in care, 25
evaluate funding and insurance coverage practices, advise 26
policymakers on evidence-based solutions, and ensure fair, timely, 27
and equitable access to rare disease therapies in the State of 28
Mississippi. 29
SECTION 2. Definitions. For the purposes of this act, the 30
following terms shall be defined as provided in this section, 31
unless the context clearly requires otherwise: 32
(a) "Rare disease" means a disease or condition 33
affecting a small percentage of the population, including 34
conditions designated under 21 USC Section 360bb or recognized as 35
rare by nationally recognized medical authorities. 36
(b) "Council" means the Mississippi Rare Disease 37
Advisory Council established under Section 41-145-3. 38
(c) "Task force" means the Rare Disease Task Force 39
established under Section 3 of this act. 40
(d) "Alternative funding program" means any program or 41
arrangement that relies on manufacturer assistance, charitable 42
contributions, or other third-party financial aid in lieu of 43
direct insurance coverage for a prescribed therapy. 44
SECTION 3. Establishment of the Rare Disease Task Force. 45
The Rare Disease Task Force is established within the Mississippi 46
Rare Disease Advisory Council. The task force shall serve as a 47
coordinated, expert-driven advisory body to provide guidance and 48
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recommendations regarding health challenges, treatment access, 49
insurance coverage practices, and funding considerations related 50
to rare diseases in the State of Mississippi. 51
SECTION 4. Membership. (1) The task force shall be 52
composed of members representing a broad range of professional 53
expertise and lived experience, including, but not limited to: 54
(a) Licensed clinicians with experience diagnosing or 55
treating rare diseases; 56
(b) Medical or scientific researchers specializing in 57
rare diseases; 58
(c) Individuals diagnosed with a rare disease; 59
(d) Family members or caregivers of individuals with 60
rare diseases; 61
(e) Representatives of rare disease patient advocacy 62
organizations; and 63
(f) Policymakers or designees with expertise in public 64
health, insurance regulation or health finance. 65
(2) The task force shall consist of seven (7) members. The 66
members of the task force shall be appointed as follows: One (1) 67
member appointed by the Lieutenant Governor; one (1) member 68
appointed by the Speaker of the House of Representatives; and 69
three (3) members appointed by the Governor; all in accordance 70
with procedures established by the council and consistent with 71
state law. The council shall appoint one (1) member who is 72
actively employed in the insurance industry at the time of 73
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appointment. The chairman of the council shall also be the chair 74
of the task force. 75
(3) Members shall serve without compensation, but may be 76
reimbursed for actual and necessary expenses, subject to the 77
availability of funds. 78
SECTION 5. Powers and duties of the task force. The task 79
force shall have the authority and responsibility to: 80
(a) Identify gaps in care, coverage limitations, 81
workforce shortages, and systemic barriers affecting individuals 82
with rare diseases in the State of Mississippi; 83
(b) Advise the Governor, Legislature, and relevant 84
state agencies on evidence-based policy, regulatory, and funding 85
recommendations to improve the quality, coordination, and 86
accessibility of rare disease care; 87
(c) Review and evaluate alternative funding programs 88
and insurance coverage practices impacting access to rare disease 89
therapies and assess their fiscal, clinical, and equity 90
implications; and 91
(d) Ensure that the perspectives and experiences of 92
patients and caregivers are meaningfully represented and 93
considered in all task force deliberations and recommendations. 94
SECTION 6. Coordination and oversight. (1) The Department 95
of Insurance shall consult with the council and the task force to 96
monitor emerging coverage barriers related to rare disease 97
therapies. 98
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(2) The council may accept and review written complaints 99
from patients, providers, or advocacy organizations regarding 100
alternative funding practices and shall refer substantiated 101
complaints to the Department of Insurance for investigation. 102
SECTION 7. Reporting requirements. (1) No later than 103
December 1 of each year, the task force, in collaboration with the 104
Department of Insurance, shall submit a written report to the 105
Governor, the Lieutenant Governor, the Speaker of the House of 106
Representatives, and the relevant legislative committees. 107
(2) The report shall include: 108
(a) A summary of task force activities and findings; 109
(b) Trends in rare disease therapy access and insurance 110
coverage; 111
(c) The prevalence and impact of alternative funding 112
programs in Mississippi; and 113
(d) Recommendations for legislative, regulatory, or 114
administrative action. 115
SECTION 8. Section 1 of House Bill No. 1622, 2026 Regular 116
Session, is amended as follows: 117
Section 1. (1) The Small Community Hospital Pilot Program 118
is established. 119
(2) As used in this section, "hospital in a small community" 120
or "small community hospital" means a hospital, as that term is 121
defined in Section 41-7-173(h)(i), which is located: 122
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(a) In a county that does not contain a municipality 123
whose population exceeds fifteen thousand (15,000) according to 124
the 2020 decennial census, and that also does not contain any 125
portion of a municipality whose population exceeds fifteen 126
thousand (15,000) according to the 2020 decennial census; or 127
(b) Within the region designated by the Mississippi 128
State Department of Health as the Delta Public Health Region as of 129
January 1, 2026. 130
A "small community hospital" shall not include licensed Rural 131
Emergency Hospitals as designated by the federal Centers for 132
Medicare and Medicaid Services. 133
(3) The State Health Officer shall issue * * * an exemption 134
to operate a geriatric psychiatric unit to any hospital in a small 135
community. The * * * exemption to operate a geriatric psychiatric 136
unit shall be limited to the main building campus of the small 137
community hospital, as of January 1, 2026, and to a five (5) mile 138
radius around the main building campus of the small community 139
hospital. * * * An exemption to operate a geriatric psychiatric 140
unit under this subsection (3) shall not be counted toward the 141
exemption allotment under subsection (4)(a) of this section. 142
(4) (a) Subject to the restriction in paragraph (b) of this 143
subsection (4), each hospital in a small community under 144
subsection (2)(a) of this section shall receive one (1) exemption, 145
and each hospital in a small community under subsection (2)(b) of 146
this section shall receive two (2) exemptions, from the 147
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requirement to obtain a certificate of need under Section 41-7-171 148
et seq. for an activity that would otherwise require a certificate 149
of need. An exemption issued under this subsection (4) shall be 150
limited to the main building campus of the small community 151
hospital, as of January 1, 2026, and to a five (5) mile radius 152
around the main building campus of the small community hospital. 153
Such exemption shall not extend to clinics or other facilities 154
owned or operated by the small community hospital that are not 155
located on the main campus of the small community hospital. Such 156
exemption shall not apply to: 157
(i) A service for which there is a general 158
certificate of need moratorium; or 159
(ii) Applications for a certificate of need that 160
would place the licensed hospital receiving the exemption within 161
thirty-five (35) miles of another licensed hospital or otherwise 162
jeopardize a licensed hospital's federal critical access hospital 163
designation. 164
(b) The State Health Officer may issue * * * an 165
exemption to operate an end-stage renal disease (ESRD) facility 166
for not more than eight (8) hospitals in a small community. No 167
more than two (2) such ESRD facilities may be located within each 168
of the four (4) Public Health Regions designated by the 169
Mississippi State Department of Health as of January 1, 2026. If 170
more than two (2) small community hospitals within the same Public 171
Health Region apply for * * * an exemption to operate an ESRD 172
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facility, the small community hospitals in areas most remote from 173
existing dialysis units shall be issued * * * exemptions. * * * 174
An exemption obtained under this paragraph (b) shall be counted 175
toward the exemption allotment under paragraph (a) of this 176
subsection. If a small community hospital applies for * * * an 177
exemption to operate an ESRD facility under this paragraph (b) but 178
is not granted * * * an exemption, such hospital may use its 179
exemption under paragraph (a) of this subsection for another 180
service. 181
(5) An exemption * * * issued under subsection (3) or (4) of 182
this section shall be specific to and solely for the hospital to 183
which it was issued and may not be transferred to another entity 184
unless the hospital itself is transferred. If a small community 185
hospital does not apply for an exemption * * * on or before June 186
30, 2027, then the small community hospital's eligibility for an 187
exemption * * * shall expire. 188
(6) The decision of the State Health Officer to issue * * * 189
an exemption under this section is final, and not subject to 190
judicial review. Any person or entity which wishes to challenge 191
the issuance of * * * an exemption may file with the State Health 192
Officer a request for reconsideration within seven (7) calendar 193
days of the decision of the State Health Officer. If such a 194
request is filed, the State Health Officer or his or her designee 195
shall conduct a hearing no sooner than fourteen (14) days from the 196
original decision, and no later than twenty-one (21) days from the 197
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ST: Rare Disease Task Force; establish within
the Mississippi Rare Disease Advisory Council.
original decision, at which hearing the interested parties may be 198
heard. The hearing shall be informal in nature, and there shall 199
be no right to engage in discovery. The purpose of the hearing is 200
to allow a party to offer an objection to the issuance of 201
the * * * exemption, or to present, in a summary fashion, matters 202
which may have been overlooked. After the hearing, the State 203
Health Officer may decide not to issue the * * * exemption, to 204
further consider the issuance of the * * * exemption or to 205
reaffirm his or her original decision. Notwithstanding the 206
foregoing, the State Hearing Officer's decision to issue * * * an 207
exemption under this section is final, and not subject to judicial 208
review. 209
SECTION 9. Section 8 of this act shall take effect and be in 210
force from and after its passage, and the remaining sections of 211
this act shall take effect and be in force and after July 1, 2026. 212