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Bill

HB 1532

TO CREATE THE ARKANSAS RARE DISEASE ADVISORY COUNCIL.

2025 Regular Session Introduced by Lee Johnson

HB 1532 aimed to create the Arkansas Rare Disease Advisory Council to enhance awareness, improve access to care, and support individuals with rare diseases in the state.

WITHDRAWN BY AUTHOR
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Bill Summary · HB 1532

Summary of House Bill 1532: Arkansas Rare Disease Advisory Council

Bill Number: HB 1532
Introduced: February 19, 2025
Status: Withdrawn by Author on April 14, 2025
Sponsor: Representative L. Johnson

Purpose and Intent

House Bill 1532 aimed to establish the Arkansas Rare Disease Advisory Council to address the challenges faced by individuals with rare diseases in the state. The council was intended to serve as a platform for education, advocacy, and policy recommendations regarding rare diseases, which affect a significant number of Arkansans, particularly children.

Key Provisions

Creation of the Council

  • The bill proposed the addition of Subchapter 12 to Arkansas Code Title 20, Chapter 8, establishing the Arkansas Rare Disease Advisory Council within the Department of Health.

Membership

  • The council would consist of eight members, including:
    • A geneticist or genetic counselor
    • A representative from the Department of Human Services knowledgeable about Medicaid
    • A representative from an academic research institution
    • At least two patients with rare diseases
    • A caregiver of a person with a rare disease
    • A member from the scientific community or biopharmaceutical industry
    • A healthcare provider experienced in treating rare diseases

Responsibilities

The council was tasked with several responsibilities, including:
- Educating the public and government entities about the needs of individuals with rare diseases.
- Conducting public hearings to assess the landscape of rare disease needs in Arkansas.
- Providing testimony on relevant legislation and rules.
- Consulting with experts to develop policy recommendations for improving access to care and treatment.
- Researching barriers to treatment and making recommendations to state agencies and insurers.
- Establishing best practices for emergency planning related to rare diseases.

Meeting Schedule

  • The council was required to hold its first meeting within 90 days of the effective date of the legislation and to meet at least monthly during the first year, transitioning to quarterly meetings thereafter.

Impact

If enacted, the Arkansas Rare Disease Advisory Council would have aimed to improve the quality of life for individuals with rare diseases by:
- Enhancing public awareness and understanding of rare diseases.
- Influencing healthcare policy to ensure better access to treatments and services.
- Supporting research and collaboration among stakeholders in the rare disease community.

Procedural Aspects

  • The bill was filed on February 19, 2025, and was read and referred to the Public Health, Welfare and Labor Committee.
  • It was withdrawn by the author on April 14, 2025, before further legislative action could take place.

This summary provides an overview of the intended goals and structure of HB 1532, highlighting its potential significance for individuals affected by rare diseases in Arkansas.

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

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