Bill Text: MS HB1572 | 2026 | Regular Session | Engrossed

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

Sponsorship: Bipartisan Bill

Status: (Failed) 2026-03-03 - Died In Committee [HB1572 Detail]

Download: Mississippi-2026-HB1572-Engrossed.html

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MISSISSIPPI LEGISLATURE

2026 Regular Session

To: Public Health and Human Services

By: Representatives Cockerham, Scott

House Bill 1572

(As Passed the House)

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.

     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 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.  This act shall take effect and be in force from and after July 1, 2026.