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SF1069 (Legislative Session 94 (2025-2026))

Membership of the Rare Disease Advisory Council modification

AI Generated Summary

The proposed bill outlines changes to the Rare Disease Advisory Council in Minnesota, aiming to modify its membership structure and define specific roles within the council. Key points of the bill include:

  1. Membership Adjustments: The bill proposes expanding the council's membership to include a diverse group of representatives such as licensed physicians, nurses, hospital administrators, individuals with rare diseases or their caregivers (with a requirement for rural representation), and representatives from patient organizations, the biotechnology industry, health plans, and medical research. It also specifies roles for pharmacists, dentists, genetic counselors, and social workers, each with experience relevant to rare diseases.

  2. Legislative and Ex Officio Members: Two members each from the Minnesota Senate and House of Representatives will be included, alongside ex-officio nonvoting memberships for the Commissioner of Health (or a designee) and representatives from prominent medical schools.

  3. Ad Hoc Membership: The council can appoint ad hoc members to provide additional expertise for specific projects. These members will not receive compensation but can have their expenses reimbursed.

  4. Duties and Functions: The advisory council is tasked with developing resources and recommendations to improve the treatment and services available for persons with rare diseases in Minnesota. This includes creating accessible resources, identifying best care practices, improving transitions between health plans, and addressing barriers to care.

  5. Funding and Grants: The bill also involves appropriating funds from the state’s general fund for the council to study sustainable reimbursement models for gene therapies treating rare diseases and to provide related recommendations to the legislature, payers, hospitals, and manufacturers.

In essence, the bill seeks to enhance the structure and efficiency of the Rare Disease Advisory Council, broaden its expertise, and better equip it to address the unique challenges faced by individuals with rare diseases and their caregivers in Minnesota.

Bill text versions

Actions

DateChamberWhereTypeNameCommittee Name
February 05, 2025SenateFloorActionIntroduction and first reading
February 05, 2025SenateFloorActionReferred toHealth and Human Services

Citations

 
[
  {
    "analysis": {
      "added": [
        "Specifies the appointment process for public members to the Rare Disease Advisory Council."
      ],
      "removed": [],
      "summary": "This section outlines how public members are appointed to various state councils including those relating to rare diseases.",
      "modified": [
        "Defines the process and criteria used by the governor to appoint public members."
      ]
    },
    "citation": "15.0597"
  },
  {
    "analysis": {
      "added": [
        "Clarifies council member terms and removal processes."
      ],
      "removed": [],
      "summary": "This section provides guidelines on the terms and compensation for public members of state councils.",
      "modified": [
        "Aligned with updates for expensing and reimbursement applicable to advisory council members."
      ]
    },
    "citation": "15.059"
  }
]

Sponsors