HB 1019 Oklahoma House · 2026 Regular Session

Public health; Oklahoma Rare Disease Advisory Council; purpose; appointment procedures; membership requirements; annual report; membership terms; vacancies; term; effective date.

HB 1019 creates the Oklahoma Rare Disease Advisory Council within the State Department of Health to address the needs of Oklahomans with rare diseases. The council, composed of 15 members including patients, caregivers, medical professionals, industry representatives, and health officials, will provide recommendations on healthcare access, emergency planning, and research. It must submit annual reports to the Legislature and Governor, including public comment periods, and hold quarterly meetings with public input opportunities. The council will operate starting February 2026, with members serving up to four years during the initial staggered rollout. This bill directly affects rare disease patients, caregivers, and healthcare providers across Oklahoma by establishing a formal advisory body to guide state policy.

Issues: ✓ Healthcare

Bill status died 1 of 4 stages cleared

Introduction

Feb 2025

Committee Review

Floor Vote

Governor

Introduced Feb 3, 2025 Last action Feb 7, 2025

Maddy AI version diff · 1 comparison

What changed between versions

Introduced → Proposed Committee Substitute (sub committee) 1 · 4 edits

MODERATE

The bill was significantly rewritten by the subcommittee to change how the Oklahoma Rare Disease Advisory Council is structured. The most notable change is that the Council's membership composition was altered, with the appointment authority shifted from the Chair to multiple state agencies. The Council now has 15 members appointed by various departments rather than 17 appointed by the Chair, and the list of required representatives was modified to include different stakeholders.

Scope change

The scope of the bill remains focused on establishing the Oklahoma Rare Disease Advisory Council, but the governance structure and membership composition have been substantially modified.

REQUIREMENT

Council membership composition changed from 17 members appointed by the Chair to 15 members appointed by multiple state agencies (State Department of Health, Oklahoma Health Care Authority, Mental Health Department, Higher Education, and others).

The list of required Council members was reorganized. The original bill required specific representatives including a pharmacist, biopharmaceutical industry rep, and mental health provider. The new version distributes these roles across different appointing agencies.

The appointment authority changed from the Council Chair to specific state agencies, which may affect how quickly and effectively the Council can be established.

TECHNICAL

The bill title was updated to reflect the committee substitute version, and the document formatting was changed from 'As Introduced' to 'Proposed Subcommittee Substitute'.

Floor votes

How they voted

No floor votes recorded yet.

Full legislative history

Actions timeline

Total actions

Key actions

Committee

Feb 7, 2025

Committee

Referred to Appropriations and Budget Health Subcommittee

lower

Feb 6, 2025

Committee

Referred to Appropriations and Budget

lower

Feb 5, 2025

Committee

Referred to Rules

lower

Feb 3, 2025

Introduced

First Reading

lower

2 primary · 0 co-sponsors