36-142.01. Arizona rare disease advisory council; purpose; membership; duties; annual report

A. The Arizona rare disease advisory council is established in the department. The council shall provide guidance and recommendations to educate the public, the legislature and other government agencies and departments, as appropriate, on the needs of individuals who have rare diseases and who are living in this state.

B. The council's appointment process shall be conducted in a transparent manner to provide interested individuals an opportunity to apply for membership on the council. All members of the council shall be full-time residents of this state, if practicable. Membership shall include a diverse set of stakeholders who represent the geographic and population diversity of this state.  The council consists of the following members:

1. One person who represents an academic research institution in this state that receives grant funding for rare disease research and who is appointed by the speaker of the house of representatives.

2. One person who represents the department and who is appointed by the governor.

3. One person who represents the Arizona health care cost containment system and who is appointed by the governor.

4. One representative from the department of insurance and financial institutions who is appointed by the governor.

5. One registered nurse or advanced practice registered nurse who is licensed and practicing in this state, who has experience treating rare diseases and who is appointed by the governor.

6. Two physicians who are practicing in this state and who have experience treating patients with rare diseases, one of whom has experience working with pediatric populations and who is appointed by the governor and one of whom is appointed by the president of the senate.

7. One geneticist or genetic counselor who is appointed by the governor.

8. One hospital administrator, or the hospital administrator's designee, from a hospital in this state that provides care to persons diagnosed with rare diseases who is appointed by the president of the senate.

9. At least one patient who has a rare disease and who is appointed by the governor.

10. At least one caregiver of a person with a rare disease who is appointed by the governor.

11. One person who represents a rare disease patient organization that operates in this state and who is appointed by the speaker of the house of representatives.

12. A pharmacist with experience dispensing drugs used to treat rare diseases who is appointed by the governor.

13. One representative of the biopharma industry who is appointed by the president of the senate.

14. One representative of a health insurer who is appointed by the president of the senate.

15. One member of the scientific community who is a medical researcher with experience conducting research on rare diseases and who is appointed by the speaker of the house of representatives.

16. One mental health provider with experience treating patients with rare diseases in this state who is appointed by the speaker of the house of representatives.

C. The initial meeting of the council shall occur within ninety days after September 26, 2025.  During the first year, the council shall meet at least once per month. The council may meet in person or via an online meeting platform. The council shall provide opportunities for the public to hear updates on the council's work and to provide input. The council shall develop and maintain a public website on which meeting minutes and meeting notices may be posted and public comments may be submitted.

D. Council members shall serve three-year terms. Council members are not eligible to receive compensation but are eligible for reimbursement of expenses pursuant to title 38, chapter 4, article 2.

E. The council may conduct the following activities to benefit those impacted by rare diseases in this state:

1. Convene public hearings, make inquiries and solicit comments from the public in this state to assist the council with a first-year landscape or survey of the unmet needs of rare disease patients, caregivers and providers in this state.

2. Provide testimony and comments on pending legislation and rules that impact this state's rare disease community.

3. Consult with experts on rare diseases to develop policy recommendations that improve patient access to, and quality of, rare disease specialists, affordable and comprehensive health care coverage, relevant diagnostics, timely treatment and other needed services.

4. 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.

5. Evaluate and make recommendations to improve the Arizona health care cost containment system and state-regulated private health insurance coverage of drugs for rare disease patients, including engaging with the pharmacy and therapeutics committee, to improve coverage of diagnostics and facilitate access to necessary health care providers with expertise in treating rare diseases.

6. Identify and distribute educational resources for health care providers to foster recognition and optimize treatment of rare diseases in this state.

F. On or before December 1 of each year, the council shall submit a report to the governor and the chairpersons and ranking members of the health and human services committees of the senate and the house of representatives, or their successor committees. Before submission, a draft of the annual report shall be made available for public comment and discussed at an open public meeting.  The annual report shall:

1. Describe the activities and progress of the council pursuant to this section.

2. Provide recommendations to the governor and the legislature on ways to address the needs of people living with rare diseases in this state.

G. The council may solicit gifts, grants and donations for operations, activities and initiatives of the council.