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HB 4169

Health: diseases; rare disease advisory council; create. Amends 1978 PA 368 (MCL 333.1101 - 333.25211) by adding secs. 5135 & 5135a.

2025-2026 Regular Session Introduced by Greg Alexander and 36 co-sponsors

Creates a Rare Disease Advisory Council to advise on research, diagnosis, treatment, access, data collection, and policy for rare diseases in Michigan.

bill electronically reproduced 03/05/2025
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Bill Summary · HB 4169

Summary — HB 4169 (2025): Rare Disease Advisory Council

Status: Introduced March 5–10, 2025; read first time and referred to the House Committee on Health Policy. (Introduced by Rep. Jason Morgan; bill text adds sections 5135 and 5135a to the Public Health Code, MCL 333.1101 et seq.)

Main purpose

HB 4169 creates a Rare Disease Advisory Council within the Michigan Department of Health and Human Services (the “department”) to advise the department, the governor, the legislature, and other state agencies on research, diagnosis, treatment, access, data collection, and policy related to rare diseases (defined as diseases affecting fewer than 200,000 people in the United States).

Key provisions and duties

  • Establishes the Rare Disease Advisory Council (sections 5135 & 5135a).

  • Required activities of the council include:

    • Researching and identifying priorities on cost‑effectiveness and access to treatments/services for people with rare diseases and recommending policies to prevent discrimination.
    • Identifying state and national best practices to improve education, care, treatment, services and supports.
    • Coordinating with other advisory bodies, community organizations, and public/private entities; disseminating findings as appropriate.
    • Advising the legislature, governor, the department, and other state agencies.
    • Making recommendations on methods to collect rare disease data.
    • Providing information or advice to the department or governor on request.
    • By March 31, 2026, assisting the department in developing a publicly accessible webpage of rare disease resources.

  • Authority to apply for and accept grants, gifts, and hold public hearings; the department to provide clerical/administrative assistance for grant applications (subject to appropriation).

Membership, governance, and operations

  • The director of the department is a council member and appoints additional members.
  • Council size: not fewer than 12 and not more than 18 appointed members (director may appoint additional members if appropriate).
  • Required categories for appointees (examples): physicians experienced with rare diseases; registered nurses; epidemiologists; hospital representatives; health insurer and HMO representatives; biopharmaceutical and pharmaceutical industry representatives; rare disease researchers; genetic counselor; parents/guardians (≤2); individuals with rare diseases (≤3, each with a different disease); representatives of patient organizations (≤2); medical ethicist.
  • First appointments must occur within 90 days after the bill’s effective date.
  • Members serve terms up to 4 years. Vacancies filled in same manner as original appointment; director may remove members for cause.
  • Meetings: at least quarterly; quorum = majority. Subject to the Open Meetings Act and Freedom of Information Act.
  • Members receive no compensation but are reimbursed for necessary travel expenses.

Who is affected / potential impact

  • Primary beneficiaries: individuals with rare diseases and their families (improved coordination, resources, and policy recommendations).
  • Stakeholders: state health agencies, health care providers (hospitals, clinicians), insurers, HMOs, biopharmaceutical companies, researchers, patient advocacy organizations, genetic counselors.
  • State government: department to provide administrative support; ability to accept grants may offset costs. No explicit appropriation in the bill; travel reimbursements and administrative time could have minor fiscal effects.

Timeline / procedural notes

  • First council appointments: within 90 days after the bill’s effective date.
  • Deliverable: assisted development of a public rare-disease resources webpage by March 31, 2026.
  • Next steps: committee consideration in the House Health Policy Committee; if enacted, sections 5135 and 5135a will be added to the Public Health Code.

If you want, I can produce a short one‑page fact sheet for stakeholders (patients, providers, insurers) or draft suggested metrics the council might use to measure access and outcomes for rare disease populations.

Compiled from official sources — confirm details with the bill’s official record.

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