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HB1572 • 2026

Rare Disease Task Force; create within the MS Rare Disease Advisory Council.

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; AND FOR RELATED PURPOSES.

Healthcare
Did Not Pass

The latest official action shows that this bill did not move forward in that session.

Sponsor
Cockerham, Scott
Last action
2026-03-03
Official status
Dead
Effective date
July 1, 20

Plain English Breakdown

The official source material does not specify exact member backgrounds beyond professional expertise and lived experience.

Rare Disease Task Force Act

This bill establishes a Rare Disease Task Force within the Mississippi Rare Disease Advisory Council to address issues related to rare diseases and improve access to treatments.

What This Bill Does

  • Creates a Rare Disease Task Force inside the existing advisory council.
  • The task force will look at problems with care, funding, and insurance for people with rare diseases.
  • It advises policymakers on how to fix these issues based on evidence.
  • The task force must report yearly to state officials about its work and findings.

Who It Names or Affects

  • People with rare diseases in Mississippi
  • Healthcare providers treating people with rare diseases

Terms To Know

Rare disease
A condition that affects a small percentage of the population.
Alternative funding program
Any program or arrangement relying on manufacturer assistance, charitable contributions, or other third-party financial aid in lieu of direct insurance coverage for prescribed therapy.

Limits and Unknowns

  • The bill did not pass and was not signed into law.
  • It would have taken effect on July 1, 2026, but this never happened because the bill died in committee.

Bill History

  1. 2026-03-03 Mississippi Legislative Bill Status System

    03/03 (S) Died In Committee

  2. 2026-02-18 Mississippi Legislative Bill Status System

    02/18 (S) Referred To Public Health and Welfare

  3. 2026-02-13 Mississippi Legislative Bill Status System

    02/13 (H) Transmitted To Senate

  4. 2026-02-12 Mississippi Legislative Bill Status System

    02/12 (H) Passed

  5. 2026-02-12 Mississippi Legislative Bill Status System

    02/12 (H) Committee Substitute Adopted

  6. 2026-02-11 Mississippi Legislative Bill Status System

    02/11 (H) Read the Third Time

  7. 2026-02-03 Mississippi Legislative Bill Status System

    02/03 (H) Title Suff Do Pass Comm Sub

  8. 2026-01-19 Mississippi Legislative Bill Status System

    01/19 (H) Referred To Public Health and Human Services

Official Summary Text

Rare Disease Task Force; create within the MS Rare Disease Advisory Council.

Current Bill Text

Read the full stored bill text 
H. B. No. 1572 *HR43/R1925CS* ~ OFFICIAL ~ G1/2
26/HR43/R1925CS
PAGE 1 (RF\KP)

To: Public Health and Human
Services
MISSISSIPPI LEGISLATURE REGULAR SESSION 2026

By: Representatives Cockerham, Scott

COMMITTEE SUBSTITUTE
FOR
HOUSE BILL NO. 1572

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
AND FOR RELATED PURPOSES. 9
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MISSISSIPPI: 10
SECTION 1. Legislative findings and purpose. (1) The 11
Legislature finds that rare diseases collectively affect a 12
substantial number of residents of the State of Mississippi and 13
frequently result in delayed diagnosis, limited treatment options, 14
fragmented care delivery, and significant financial burdens for 15
patients and their families. The Legislature further finds that 16
certain insurance coverage practices, including the use of 17
alternative funding programs, may improperly limit or delay access 18
to medically necessary therapies for individuals living with rare 19
diseases. 20
H. B. No. 1572 *HR43/R1925CS* ~ OFFICIAL ~
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(2) The purpose of this act is to establish a coordinated, 21
expert-driven Rare Disease Task Force to identify gaps in care, 22
evaluate funding and insurance coverage practices, advise 23
policymakers on evidence-based solutions, and ensure fair, timely, 24
and equitable access to rare disease therapies in the State of 25
Mississippi. 26
SECTION 2. Definitions. For the purposes of this act, the 27
following terms shall be defined as provided in this section, 28
unless the context clearly requires otherwise: 29
(a) "Rare disease" means a disease or condition 30
affecting a small percentage of the population, including 31
conditions designated under 21 USC Section 360bb or recognized as 32
rare by nationally recognized medical authorities. 33
(b) "Council" means the Mississippi Rare Disease 34
Advisory Council established under Section 41-145-3. 35
(c) "Task force" means the Rare Disease Task Force 36
established under this act. 37
(d) "Alternative funding program" means any program or 38
arrangement that relies on manufacturer assistance, charitable 39
contributions, or other third-party financial aid in lieu of 40
direct insurance coverage for a prescribed therapy. 41
SECTION 3. Establishment of the Rare Disease Task Force. 42
The Rare Disease Task Force is established within the Mississippi 43
Rare Disease Advisory Council. The task force shall serve as a 44
coordinated, expert-driven advisory body to provide guidance and 45
H. B. No. 1572 *HR43/R1925CS* ~ OFFICIAL ~
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recommendations regarding health challenges, treatment access, 46
insurance coverage practices, and funding considerations related 47
to rare diseases in the State of Mississippi. 48
SECTION 4. Membership. (1) the task force shall be 49
composed of members representing a broad range of professional 50
expertise and lived experience, including but not limited to: 51
(a) Licensed clinicians with experience diagnosing or 52
treating rare diseases; 53
(b) Medical or scientific researchers specializing in 54
rare diseases; 55
(c) Individuals diagnosed with a rare disease; 56
(d) Family members or caregivers of individuals with 57
rare diseases; 58
(e) Representatives of rare disease patient advocacy 59
organizations; and 60
(f) Policymakers or designees with expertise in public 61
health, insurance regulation or health finance. 62
(2) The task force shall consist of seven (7) members. The 63
members of the task force shall be appointed as follows: One (1) 64
member appointed by the Lieutenant Governor; one (1) member 65
appointed by the Speaker of the House of Representatives; and 66
three (3) members appointed by the Governor; all in accordance 67
with procedures established by the council and consistent with 68
state law. The council shall appoint one (1) member who is 69
actively employed in the insurance industry at the time of 70
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appointment. The chairman of the council shall also be the chair 71
of the task force. 72
(3) Members shall serve without compensation, but may be 73
reimbursed for actual and necessary expenses, subject to the 74
availability of funds. 75
SECTION 5. Powers and duties of the task force. The task 76
force shall have the authority and responsibility to: 77
(a) Identify gaps in care, coverage limitations, 78
workforce shortages, and systemic barriers affecting individuals 79
with rare diseases in the State of Mississippi; 80
(b) Advise the Governor, Legislature, and relevant 81
state agencies on evidence-based policy, regulatory, and funding 82
recommendations to improve the quality, coordination, and 83
accessibility of rare disease care; 84
(c) Review and evaluate alternative funding programs 85
and insurance coverage practices impacting access to rare disease 86
therapies and assess their fiscal, clinical, and equity 87
implications; and 88
(d) Ensure that the perspectives and experiences of 89
patients and caregivers are meaningfully represented and 90
considered in all task force deliberations and recommendations. 91
SECTION 6. Coordination and oversight. (1) The Department 92
of Insurance shall consult with the council and the task force to 93
monitor emerging coverage barriers related to rare disease 94
therapies. 95
H. B. No. 1572 *HR43/R1925CS* ~ OFFICIAL ~
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ST: Rare Disease Task Force; create within the
MS Rare Disease Advisory Council.
(2) The council may accept and review written complaints 96
from patients, providers, or advocacy organizations regarding 97
alternative funding practices and shall refer substantiated 98
complaints to the Department of Insurance for investigation. 99
SECTION 7. Reporting requirements. (1) No later than 100
December 1 of each year, the task force, in collaboration with the 101
Department of Insurance, shall submit a written report to the 102
Governor, the Lieutenant Governor, the Speaker of the House of 103
Representatives, and the relevant legislative committees. 104
(2) The report shall include: 105
(a) A summary of task force activities and findings; 106
(b) Trends in rare disease therapy access and insurance 107
coverage; 108
(c) The prevalence and impact of alternative funding 109
programs in Mississippi; and 110
(d) Recommendations for legislative, regulatory, or 111
administrative action. 112
SECTION 8. This act shall take effect and be in force from 113
and after July 1, 2026. 114