HB 2380: rare disease advisory council - Arizona

Senate Engrossed Version → Chaptered Version · 6 edits

MODERATE

This bill establishes an Arizona Rare Disease Advisory Council to provide guidance on rare disease needs to the public, legislature, and government agencies. The council will consist of 16 members representing diverse stakeholders including patients, caregivers, healthcare providers, researchers, and industry representatives. The bill adds new sections detailing council membership, duties, reporting requirements, and initial term dates for appointed members.

Scope change

The bill adds a new advisory council under the Department of Health Services with no changes to existing rare disease laws or programs.

REQUIREMENT

Establishes a new Rare Disease Advisory Council with 16 specific member positions appointed by various officials

Requires the council to meet monthly for the first year and maintain a public website with meeting minutes and public comment opportunities

Requires annual reports to be submitted to the governor and legislative committee chairs by December 1 each year

Allows the council to solicit gifts, grants, and donations for operations and initiatives

Expands council duties to include evaluating improvements to the Arizona Health Care Cost Containment System and distributing educational resources to healthcare providers

TIMELINE

Sets initial term end dates for council members ranging from January 1, 2028 to January 1, 2030 based on their appointment category

House Engrossed Version → Senate Engrossed Version · 3 edits · Apr 29, 2025

MINOR

The bill was transferred from the House to the Senate version, with significant changes to how council members are appointed and their initial terms. The Senate version clarifies which appointing authority (governor, speaker of the house, or president of the senate) selects each member and reorganizes the staggered term end dates to align with specific appointment sources.

Scope change

The bill's scope remains focused on establishing an Arizona rare disease advisory council, but the appointment authority for each council member was expanded and clarified to include the speaker of the house and president of the senate in addition to the governor.

ELIGIBILITY

Added specific appointing authorities for each council member, including the speaker of the house for academic researchers, patient organizations, and mental health providers, and the president of the senate for hospital administrators, biopharma representatives, insurers, and some physicians.

TIMELINE

Reorganized the staggered term end dates to group members by their appointing authority rather than assigning fixed dates to individual positions, ensuring terms align with the appointing entity's schedule.

REQUIREMENT

Changed the language for subsequent appointments from the governor to the 'appointing entity,' reflecting the new multi-authority appointment structure.

Introduced Version → House Engrossed Version · 4 edits · Apr 29, 2025

MODERATE

The bill was reformatted from an introduced version to a house engrossed version, which typically means it has passed the House and is ready for the Senate. The substantive policy content remains the same, establishing a Rare Disease Advisory Council in Arizona to provide guidance on rare disease needs, though the formatting changes include reorganization of sections and addition of implementation details like specific term end dates for initial council members.

Scope change

The bill's scope remains unchanged - it still establishes a Rare Disease Advisory Council in the Department of Health Services, but formatting reorganization added specific implementation details about initial member terms.

TECHNICAL

Document structure was reorganized from introduced format to engrossed format with different section numbering and layout

Statute text was reformatted with different capitalization and spacing conventions while maintaining the same substantive content

TIMELINE

Added specific implementation timeline with initial council member terms ending on January 1, 2028, 2029, and 2030

REQUIREMENT

Added findings section explaining the rationale for the council, including statistics about rare disease prevalence and treatment gaps

rare disease advisory council

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