Bill Text: MS SB2529 | 2026 | Regular Session | Introduced

Mississippi Senate Bill 2529

Introduced

Bill Title: Rare diseases; establish Rare Disease Task Force and establish insurance coverage integrity for rare disease therapies.

Sponsorship: Partisan Bill (Republican 1)

Status: (Failed) 2026-02-03 - Died In Committee [SB2529 Detail]

Download: Mississippi-2026-SB2529-Introduced.html

MISSISSIPPI LEGISLATURE

2026 Regular Session

To: Public Health and Welfare

By: Senator(s) McMahan

Senate Bill 2529

AN ACT TO STATE LEGISLATIVE FINDINGS CONCERNING RARE DISEASES; TO PROVIDE THE PURPOSE OF THIS ACT; TO DEFINE TERMS; TO ESTABLISH THE RARE DISEASE TASK FORCE; TO PROVIDE FOR THE MEMBERSHIP OF THE TASK FORCE; TO PROVIDE THE POWERS AND DUTIES OF THE TASK FORCE; TO PROVIDE FOR MEETINGS OF THE TASK FORCE; TO PROVIDE FOR COORDINATION AND OVERSIGHT OF THE TASK FORCE; TO ESTABLISH REPORTING REQUIREMENTS; TO PROVIDE THAT THE MISSISSIPPI INSURANCE DEPARTMENT SHALL PROVIDE STAFF AND CLERICAL SUPPORT TO THE TASK FORCE; TO GRANT THE MISSISSIPPI INSURANCE DEPARTMENT RULEMAKING AUTHORITY; TO ESTABLISH INSURANCE COVERAGE INTEGRITY FOR RARE DISEASE THERAPIES; AND FOR RELATED PURPOSES.

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

SECTION 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.

The purpose of Sections 1 through 8 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. For the purposes of this act, the following terms shall have the meanings ascribed herein 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 � 360bb as rare or recognized as rare by nationally recognized medical authorities.

(b) "Council" means the Mississippi Rare Disease Advisory Council.

(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. (1) There is hereby created the Rare Disease Task Force within the Mississippi Rare Disease Advisory Council.

(2) 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. (1) The task force shall be composed of no more than seven (7) members representing a broad range of professional expertise and lived experience, which may include:

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

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

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

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

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

(2) Within thirty (30) days of the effective date of this act, members of the task force shall be appointed in coordination with the Mississippi Rare Disease Advisory Council. Three (3) members shall be appointed by the Governor, one (1) member shall be appointed by the Lieutenant Governor, one (1) member shall be appointed by the Speaker of the House of Representatives, and one (1) member, employed in the insurance sector at the time of appointment, shall be appointed by the Mississippi Rare Disease Advisory Council. The Chairman of the Mississippi Rare Disease Advisory Council shall be the seventh member of the Rare Disease Task Force and shall serve as the chairman of the task force.

(3) (a) Any legislative member of the study committee shall be entitled to per diem and reimbursement of expenses in accordance with Section 25-3-41, Mississippi Code of 1972.

(b) Nonlegislative members shall serve without compensation but may be reimbursed for necessary travel expenses from any available funds designated for such purposes.

SECTION 5. (1) 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.

(2) The task force shall meet within forty-five (45) days of the effective date of this act at a meeting to be called by the appointed chair of the task force. At its first meeting, the committee shall establish rules for transacting business and keeping records. The committee shall thereafter meet as necessary.

SECTION 6. (1) The Mississippi Insurance Department shall consult with the Mississippi Rare Disease Advisory 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 Mississippi Insurance Department for investigation.

SECTION 7. (1) No later than December 1 of each year, the task force, in collaboration with the Mississippi Insurance Department, shall submit a written report to the Governor, the Lieutenant Governor, the Speaker of the House of Representatives, and the relevant legislative committees, including the Public Health and Welfare Committee of the Mississippi Senate, the Public Health and Human Services Committee of the Mississippi House of Representatives and the Insurance Committees.

(2) The report shall include:

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

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

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

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

SECTION 8. (1) The Mississippi Insurance Department shall provide necessary staff and administrative support to the committee, as well as prepare annual written reports.

SECTION 9. (1) A health insurer, health benefit plan or pharmacy benefit manager regulated by the Mississippi Department of Insurance shall not:

(a) Exclude, remove, or reclassify a rare disease therapy that would otherwise be covered under a plan's formulary or benefit design for the purpose or effect of obtaining, directing, or relying upon financial assistance from a manufacturer, charitable organization, or other third party;

(b) Designate a rare disease therapy as "nonessential," "noncovered," or any similar classification intended to avoid the obligation to cover or reimburse for the therapy; or

(c) Condition, delay, or deny coverage of a prescribed rare disease therapy based on the availability or potential availability of third-party financial assistance.

(2) A rebuttable presumption of violation shall exist if a health insurer or pharmacy benefit manager removes a prescribed rare disease therapy from coverage and directs or refers an enrollee to an alternative funding program as a means of obtaining that therapy.

(3) The presumption may be rebutted only by clear and convincing evidence, submitted to the Mississippi Department of Insurance, that the exclusion or reclassification was made solely for legitimate clinical reasons and not for the purpose or effect of shifting payment responsibility.

(4) Any violation of this section shall constitute an unfair or deceptive act or practice in the business of insurance under Mississippi law and shall be subject to all existing enforcement powers, remedies, and penalties of the Department of Insurance, including the authority to order reimbursement for out-of-pocket costs or delays in treatment.

(5) The Mississippi Insurance Department may adopt rules and regulations and require plan filings necessary to implement this section, including documentation demonstrating compliance with formulary inclusion standards and reporting of any reclassification or exclusion of previously covered rare disease therapies.

SECTION 10. This act shall take effect and be in force from and after January 1, 2027, and Section 9 of this act shall apply to all health benefit plans and pharmacy benefit managers regulated by the Mississippi Department of Insurance that are issued, renewed or amended on or after that date.