HB 1019 — Public health; Oklahoma Rare Disease Advisory Council; purpose; appointment procedures; membership requirements; annual report; membership terms; vacancies; term; effective date.

STATEHB1019 OFSUBPCS1 OKLAHOMAMichelle 2McCane-TJ 1st2/13/2025 Session1:57:19 ofpm theCOMMITTEE 60thAMENDMENT LegislatureHOUSE (2025)OF 3REPRESENTATIVES HOUSEState BILLof 1019Oklahoma By:SPEAKER:

McCaneCHAIR: 4 5 AS INTRODUCED 7 An Act relating to public health;

I move to amend HB1019 Of the printed Bill Page Section Lines Of the Engrossed Bill By deleting the content of the entire measure, and by inserting in lieu thereof the following language:

AMEND TITLE TO CONFORM TO AMENDMENTS Amendment submitted by:

Michelle McCane Adopted:

_____________________________ ______________________Reading Clerk___ STATE OF OKLAHOMA 1st Session of the 60th Legislature (2025) PROPOSED SUBCOMMITTEE SUBSTITUTE FOR HOUSE BILL NO.

1019 By:

McCane 6 8 PROPOSED SUBCOMMITTEE SUBSTITUTE An Act relating to public health;

providing for per diem expenses;

TheThere Oklahomais Rarehereby Diseasecreated Advisory Council shall be established within the State Department of Health inthe accordanceOklahoma withRare thisDisease section.Advisory Council.

The purpose of the Council shall be to provide guidance and recommendations to educate the public, the Legislature, and other stateReq. agencies, as appropriate, on the needs of individuals with rare diseases living in this state.

Req.

1109512482 Page 1 C.state agencies, as appropriate, on the needs of individuals with rare diseases living in this state.

TheC. Council shall conduct the following activities to 2 benefit those impacted by rare diseases in this state:

3The 1.Council shall conduct the following activities to benefit those impacted by rare diseases in this state:

Convene1. public hearings, make inquiries, and solicit comments from the general public in Oklahoma to assist the Council 5 with a first-year landscape or survey of the needs of rare disease 6 patients, caregivers, and providers in the state;

7Convene 2.public hearings, make inquiries, and solicit comments from the general public in Oklahoma to assist the Council with a first-year landscape or survey of the needs of rare disease patients, caregivers, and providers in the state;

Provide2. testimony and comments on pending legislation and 8 regulations before the Legislature, if called, and other state agencies that impact Oklahoma's rare disease community;

Provide testimony and comments on pending legislation and regulations before the Legislature, if called, and other state agencies that impact Oklahoma's rare disease community;

Identify areas of unmet need for research and opportunities for collaboration across stakeholders and other state rare disease advisoryReq. councils that can inform future studies and work done by the Council;

and Req.

1109512482 Page 2 6.advisory councils that can inform future studies and work done by the Council;

Research and identify6. best practices to reduce health 2 disparities and achieve health equity in the research, diagnosis, 3 and treatment of rare disease in this state.

Research and identify best practices to reduce health disparities and achieve health equity in the research, diagnosis, and treatment of rare disease in this state.

The Council's appointment process shall be conducted in 5 a transparent manner to provide interested individuals an 6 opportunity to apply for membership on the Council.

All members of 7 the Council shall be full-time residents of this state as 8 practicable.

The ChairGovernor shall appoint noseven fewer(7) thanmembers: seventeen (17) members, including the following:

onetwo representativepatients ofwho anhave academica research institution in the state that receives any grant funding for rare diseasedisease, research, b.

onetwo representativecaregivers of thea Stateperson Departmentwith ofa Health'srare Officedisease, of Minority Health and Health Equity, or successor division, c.

one representative of the Oklahomabiopharmaceutical Healthindustry, Care Authority, d.

one representative of thea Insurancerare Department,disease Req.patient organization that operates in this state, and e.

No.one representative of a health plan company.

110954. Page 3 e.

oneThe registeredState nurseDepartment orof AdvancedHealth Practiceshall Registeredappoint 2five Nurse(5) licensedmembers: and practicing in this state with 3 experience treating rare diseases, f.

one physician practicing in this state with experience 5 treating rare diseases, 6 g.

one geneticist or genetic counselor, 7 h.

one hospital administrator, or his or her designee, 8 from a hospital in this state that provides care to persons diagnosed with a rare disease, i.

at least two patients who have a rare disease, j.

at least one caregiver of a person with a rare disease, k.

one representative of a rare disease patient organization that operates in this state, l.