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

MISSISSIPPI LEGISLATURE

2026 Regular Session

To: Public Health and Welfare

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

Senate Bill 2474

(As Sent to Governor)

AN ACT TO ESTABLISH THE RARE DISEASE TASK FORCE WITHIN THE
MISSISSIPPI RARE DISEASE ADVISORY COUNCIL; TO PROVIDE THAT THE PURPOSE OF THE
TASK FORCE IS TO IDENTIFY GAPS IN CARE, EVALUATE FUNDING AND INSURANCE COVERAGE
PRACTICES, ADVISE POLICYMAKERS ON EVIDENCE-BASED SOLUTIONS, AND ENSURE FAIR,
TIMELY, AND EQUITABLE ACCESS TO RARE DISEASE THERAPIES IN THIS STATE; TO
PROVIDE FOR THE MEMBERSHIP, POWERS AND DUTIES OF THE TASK FORCE; TO REQUIRE THE
TASK FORCE TO MAKE AN ANNUAL REPORT TO CERTAIN PUBLIC OFFICIALS; TO AMEND
SECTION 1 OF HOUSE BILL NO. 1622, 2026 REGULAR SESSION, TO REPLACE CERTAIN
INSTANCES OF THE TERM "LICENSE" WITH "EXEMPTION" FOR THE
SAKE OF ADMINISTRATIVE EFFICIENCY; AND FOR RELATED PURPOSES.

BE IT ENACTED BY THE
LEGISLATURE OF THE STATE OF MISSISSIPPI:

SECTION 1.  Legislative
findings and purpose.  (1)  The Legislature finds that rare diseases
collectively affect a substantial number of residents of the State of
Mississippi and frequently result in delayed diagnosis, limited treatment
options, fragmented care delivery, and significant financial burdens for
patients and their families.  The Legislature further finds that certain
insurance coverage practices, including the use of alternative funding
programs, may improperly limit or delay access to medically necessary therapies
for individuals living with rare diseases.

(2)  The purpose of this act
is to establish a coordinated, expert-driven Rare Disease Task Force to
identify gaps in care, evaluate funding and insurance coverage practices, advise
policymakers on evidence-based solutions, and ensure fair, timely, and
equitable access to rare disease therapies in the State of Mississippi.

SECTION 2.  Definitions.
For the purposes of this act, the following terms shall be defined as
provided in this section, unless the context clearly requires otherwise:

(a)  "Rare
disease" means a disease or condition affecting a small percentage of the
population, including conditions designated under 21 USC Section 360bb or
recognized as rare by nationally recognized medical authorities.

(b)
"Council" means the Mississippi Rare Disease Advisory Council
established under Section 41-145-3.

(c)  "Task
force" means the Rare Disease Task Force established under Section 3 of
this act.

(d)  "Alternative
funding program" means any program or arrangement that relies on
manufacturer assistance, charitable contributions, or other third-party
financial aid in lieu of direct insurance coverage for a prescribed therapy.

SECTION 3.  Establishment
of the Rare Disease Task Force.  The Rare Disease Task Force is established
within the Mississippi Rare Disease Advisory Council.  The task force shall
serve as a coordinated, expert-driven advisory body to provide guidance and
recommendations regarding health challenges, treatment access, insurance
coverage practices, and funding considerations related to rare diseases in the
State of Mississippi.

SECTION 4.  Membership.
(1)  The task force shall be composed of members representing a broad range of
professional expertise and lived experience, including, but not limited to:

(a)  Licensed
clinicians with experience diagnosing or treating rare diseases;

(b)  Medical or
scientific researchers specializing in rare diseases;

(c)  Individuals
diagnosed with a rare disease;

(d)  Family members or
caregivers of individuals with rare diseases;

(e)  Representatives of
rare disease patient advocacy organizations; and

(f)  Policymakers or
designees with expertise in public health, insurance regulation or health finance.

(2)  The task force shall consist
of seven (7) members.  The members of the task force shall be appointed as
follows:  One (1) member appointed by the Lieutenant Governor; one (1) member
appointed by the Speaker of the House of Representatives; and three (3) members
appointed by the Governor; all in accordance with procedures established by the
council and consistent with state law.  The council shall appoint one (1)
member who is actively employed in the insurance industry at the time of
appointment.  The chairman of the council shall also be the chair of the task
force.

(3)  Members shall serve
without compensation, but may be reimbursed for actual and necessary expenses,
subject to the availability of funds.

SECTION 5.  Powers
and duties of the task force.  The task force shall have the authority and
responsibility to:

(a)  Identify gaps in
care, coverage limitations, workforce shortages, and systemic barriers
affecting individuals with rare diseases in the State of Mississippi;

(b)  Advise the
Governor, Legislature, and relevant state agencies on evidence-based policy,
regulatory, and funding recommendations to improve the quality, coordination,
and accessibility of rare disease care;

(c)  Review and
evaluate alternative funding programs and insurance coverage practices
impacting access to rare disease therapies and assess their fiscal, clinical,
and equity implications; and

(d)  Ensure that the
perspectives and experiences of patients and caregivers are meaningfully
represented and considered in all task force deliberations and recommendations.

SECTION 6.  Coordination
and oversight.  (1)  The Department of Insurance shall consult with the
council and the task force to monitor emerging coverage barriers related to
rare disease therapies.

(2)  The council may accept
and review written complaints from patients, providers, or advocacy
organizations regarding alternative funding practices and shall refer
substantiated complaints to the Department of Insurance for investigation.

SECTION 7.  Reporting
requirements.  (1)  No later than December 1 of each year, the task force,
in collaboration with the Department of Insurance, shall submit a written
report to the Governor, the Lieutenant Governor, the Speaker of the House of
Representatives, and the relevant legislative committees.

(2)  The report shall
include:

(a)  A summary of task
force activities and findings;

(b)  Trends in rare
disease therapy access and insurance coverage;

(c)  The prevalence and
impact of alternative funding programs in Mississippi; and

(d)  Recommendations
for legislative, regulatory, or administrative action.

SECTION 8.  Section 1
of House Bill No. 1622, 2026 Regular Session, is amended as follows:

Section 1.  (1)  The
Small Community Hospital Pilot Program is established.

(2)  As used in this
section, "hospital in a small community" or "small community
hospital" means a hospital, as that term is defined in Section 41-7-173(h)(i),
which is located:

(a)  In a county that
does not contain a municipality whose population exceeds fifteen thousand
(15,000) according to the 2020 decennial census, and that also does not contain
any portion of a municipality whose population exceeds fifteen thousand
(15,000) according to the 2020 decennial census; or

(b)  Within the region
designated by the Mississippi State Department of Health as the Delta Public
Health Region as of January 1, 2026.

A "small community
hospital" shall not include licensed Rural Emergency Hospitals as
designated by the federal Centers for Medicare and Medicaid Services.

(3)  The State Health
Officer shall issue * * * a
license an exemption to operate a geriatric psychiatric unit
to any hospital in a small community.  The * * * license exemption to operate a
geriatric psychiatric unit shall be limited to the main building campus of the
small community hospital, as of January 1, 2026, and to a five (5) mile radius
around the main building campus of the small community hospital. * * *  A license  An exemption to operate a
geriatric psychiatric unit under this subsection (3) shall not be counted
toward the exemption allotment under subsection (4)(a) of this section.

(4)  (a)  Subject to the
restriction in paragraph (b) of this subsection (4), each hospital in a small
community under subsection (2)(a) of this section shall receive one (1)
exemption, and each hospital in a small community under subsection (2)(b) of
this section shall receive two (2) exemptions, from the requirement to obtain a
certificate of need under Section 41-7-171 et seq. for an activity that would
otherwise require a certificate of need.  An exemption issued under this
subsection (4) shall be limited to the main building campus of the small
community hospital, as of January 1, 2026, and to a five (5) mile radius around
the main building campus of the small community hospital.  Such exemption shall
not extend to clinics or other facilities owned or operated by the small
community hospital that are not located on the main campus of the small
community hospital.  Such exemption shall not apply to:

(i)  A service for
which there is a general certificate of need moratorium; or

(ii)  Applications
for a certificate of need that would place the licensed hospital receiving the
exemption within thirty-five (35) miles of another licensed hospital or
otherwise jeopardize a licensed hospital's federal critical access hospital
designation.

(b)  The State Health
Officer may issue * * * a
license an exemption to operate an end-stage renal disease
(ESRD) facility for not more than eight (8) hospitals in a small community.  No
more than two (2) such ESRD facilities may be located within each of the four
(4) Public Health Regions designated by the Mississippi State Department of
Health as of January 1, 2026.  If more than two (2) small community hospitals
within the same Public Health Region apply for * * * a license an exemption to operate an
ESRD facility, the small community hospitals in areas most remote from existing
dialysis units shall be issued * * * licenses exemptions. * * *  A license  An exemption obtained under
this paragraph (b) shall be counted toward the exemption allotment under
paragraph (a) of this subsection.  If a small community hospital applies for * * * a license an exemption to operate an
ESRD facility under this paragraph (b) but is not granted * * * a license an exemption, such hospital
may use its exemption under paragraph (a) of this subsection for another
service.

(5)  An exemption * * * or license issued under subsection (3) or (4)
of this section shall be specific to and solely for the hospital to which it
was issued and may not be transferred to another entity unless the hospital
itself is transferred.  If a small community hospital does not apply for an
exemption * * * or license
on or before June 30, 2027, then the small community hospital's eligibility for
an exemption * * * or
license shall expire.

(6)  The decision of the
State Health Officer to issue * * * a license an exemption under this
section is final, and not subject to judicial review.  Any person or entity
which wishes to challenge the issuance of * * * a license an exemption may file with
the State Health Officer a request for reconsideration within seven (7)
calendar days of the decision of the State Health Officer.  If such a request
is filed, the State Health Officer or his or her designee shall conduct a
hearing no sooner than fourteen (14) days from the original decision, and no
later than twenty-one (21) days from the original decision, at which hearing
the interested parties may be heard.  The hearing shall be informal in nature,
and there shall be no right to engage in discovery.  The purpose of the hearing
is to allow a party to offer an objection to the issuance of the * * * license exemption, or to present, in a
summary fashion, matters which may have been overlooked.  After the hearing,
the State Health Officer may decide not to issue the * * * license exemption, to further consider
the issuance of the * * *
license exemption or to reaffirm his or her original
decision.  Notwithstanding the foregoing, the State Hearing Officer's decision
to issue * * * a license
an exemption under this section is final, and not subject to judicial
review.

SECTION 9.  Section
8 of this act shall take effect and be in force from and after its passage, and
the remaining sections of this act shall take effect and be in force and after
July 1, 2026.