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ARIZONA HOUSE OF REPRESENTATIVESFifty-seventh Legislature First Regular Session |
House: HHS DP 12-0-0-0 | GOV DP 5-1-1-0 |
HB 2380: rare disease advisory council
Sponsor: Representative Hernandez A, LD 20
House Engrossed
Overview
Establishes the Arizona Rare Disease Advisory Council (RDAC) to educate the public, Legislature and other government agencies and departments, as appropriate, on the needs of individuals who have rare diseases and are living in Arizona. Outlines RDAC membership and duties. Contains legislative findings.
History
The Arizona Department of Health Services (DHS) aims to produce, protect and improve the health and wellness of individuals and communities in Arizona. DHS strives to set the standard for personal and community health through direct care, science, public policy and leadership. DHS operates programs from the following areas: 1) disease prevention and control; 2) health promotion; 3) community public health; 4) environmental health; 5) maternal and child health; 6) emergency preparedness; and 7) regulation of healthcare institutions and facilities.
Currently, there are 30 states that have established an RDAC. These states include: Alabama, California, Colorado, Connecticut, Delaware, Florida, Georgia, Illinois, Indiana, Kentucky, Louisiana, Maine, Maryland, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Nevada, New Hampshire, New Jersey, New York, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee, Utah, Virginia and West Virginia (National Organization for Rare Disorders).
Provisions
1. Establishes the RDAC within DHS to provide guidance and recommendations to educate the public, Legislature and other government agencies and departments, as appropriate, on the needs of individuals who have rare diseases and are living in Arizona. (Sec. 1)
2. Requires the appointment process to be conducted in a transparent manner to provide interested individuals an opportunity to apply for RDAC membership. (Sec. 1)
3. Requires all RDAC members to be full-time residents of Arizona, if practicable. (Sec. 1)
4. Requires RDAC membership to include a diverse set of stakeholders who represent the geographic and population diversity of Arizona. (Sec. 1)
5. Lists the types of members to be appointed to the RDAC. (Sec. 1)
6. Requires RDAC's initial meeting to occur within 90 days after the effective date. (Sec. 1)
7. Directs the RDAC to meet at least once a month, during the first year. (Sec. 1)
8. Allows RDAC to meet in person or via an online meeting platform. (Sec. 1)
9. Requires RDAC to provide opportunities for the public to hear updates on their work and provide input. (Sec. 1)
10. Instructs RDAC to develop and maintain a public website on which meeting minutes and notices may be posted and public comments may be submitted. (Sec. 1)
11. Requires RDAC members to serve three-year terms. (Sec. 1)
12. Specifies that RDAC members are not eligible to receive compensation but are eligible for reimbursement of expenses. (Sec. 1)
13. Allows RDAC to:
a) convene public hearings, make inquiries and solicit comments from the public to assist with a first-year landscape or survey of the unmet needs of rare disease patients, caregivers and providers in Arizona;
b) provide testimony and comments on pending legislation and rules that impact Arizona's rare disease community;
c) consult with experts to develop policy recommendations that improve patient access to, and quality of, rare disease specialists, affordable and comprehensible health care coverage, relevant diagnostics, timely treatment and other needed services;
d) research and make recommendations to state agencies and health insurers that provide services to persons with rare diseases regarding the impact of orphan drug pricing, prior authorization, cost-sharing or other barriers to providing treatment and care for patients;
e) evaluate and make recommendations to improve the Arizona Health Care Cost Containment System (AHCCCS) and state-regulated private health insurance coverage of drugs for rare disease patients;
f) engage with the AHCCCS Pharmacy and Therapeutics Committee to improve coverage of diagnostics and facilitates access to necessary health care providers with expertise in treating rare diseases; and
g) identify and distribute educational resources for health care providers to foster recognition and optimize treatment of rare diseases in Arizona. (Sec. 1)
14. Requires the RDAC to submit a report to the Governor, chairpersons and ranking members of the Health and Human Services Committee of the Senate and the House of Representatives or their successor committee annually on or before December 1. (Sec. 1)
15. Requires the draft of the RDAC annual report to be made available for public comment and discussed at an open public meeting. (Sec. 1)
16. Requires the RDAC annual report to:
a) describe RDAC's activities and progress; and
b) provide recommendations to the Governor and Legislature on ways to address the needs of people living with rare diseases in Arizona. (Sec. 1)
17. Allows the RDAC to solicit gifts, grants and donations for operations, activities and initiatives. (Sec. 1)
18. Outlines initial terms for RDAC members. (Sec. 2)
19. Requires the Governor to make all subsequent appointments as prescribed by statute. (Sec. 2)
20. Contains legislative findings. (Sec. 3)
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24. HB 2380
25. Initials AG/BG Page 0 House Engrossed
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