HB 2380 — rare disease advisory council

HouseSenate Engrossed House Bill rare disease advisory council State of Arizona House of Representatives Fifty-seventh Legislature First Regular Session CHAPTER 170 HOUSE BILL 2380 AN ACT AMENDING TITLE 36, CHAPTER 1, ARTICLE 2, ARIZONA REVISED STATUTES, BY ADDING SECTION 36-142.01;

THE COUNCIL CONSISTS OF THE FOLLOWING MEMBERSMEMBERS: APPOINTED BY THE GOVERNOR:

ONE PERSON WHO REPRESENTS AN ACADEMIC RESEARCH INSTITUTION IN THIS STATE THAT RECEIVES GRANT FUNDING FOR RARE DISEASE RESEARCH.RESEARCH AND WHO IS APPOINTED BY THE SPEAKER OF THE HOUSE OF REPRESENTATIVES.

ONE PERSON WHO REPRESENTS THE DEPARTMENT.DEPARTMENT AND WHO IS APPOINTED BY THE GOVERNOR.

ONE PERSON WHO REPRESENTS THE ARIZONA HEALTH CARE COST CONTAINMENT SYSTEM.SYSTEM AND WHO IS APPOINTED BY THE GOVERNOR.

ONE REPRESENTATIVE FROM THE DEPARTMENT OF INSURANCE AND FINANCIAL INSTITUTIONS.INSTITUTIONS WHO IS APPOINTED BY THE GOVERNOR.

ONE REGISTERED NURSE OR ADVANCED PRACTICE REGISTERED NURSE WHO IS LICENSED AND PRACTICING IN THIS STATESTATE, AND WHO HAS EXPERIENCE TREATING RARE DISEASES.DISEASES AND WHO IS APPOINTED BY THE GOVERNOR.

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.POPULATIONS AND WHO IS APPOINTED BY THE GOVERNOR AND ONE OF WHOM IS APPOINTED BY THE PRESIDENT OF THE SENATE.

ONE GENETICIST OR GENETIC COUNSELOR.COUNSELOR WHO IS APPOINTED BY THE GOVERNOR.

ONE HOSPITAL ADMINISTRATOR, OR THE HOSPITAL ADMINISTRATOR'S DESIGNEE, FROM A HOSPITAL IN THIS STATE THAT PROVIDES CARE TO PERSONS DIAGNOSED WITH RARE DISEASES.DISEASES WHO IS APPOINTED BY THE PRESIDENT OF THE SENATE.

AT LEAST ONE PATIENT WHO HAS A RARE DISEASE.DISEASE AND WHO IS APPOINTED BY THE GOVERNOR.

AT LEAST ONE CAREGIVER OF A PERSON WITH A RARE DISEASE.DISEASE WHO IS APPOINTED BY THE GOVERNOR.

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ONE2380 PERSON11. WHO REPRESENTS A RARE DISEASE PATIENT ORGANIZATION THAT OPERATES IN THIS STATE.

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.

A PHARMACIST WITH EXPERIENCE DISPENSING DRUGS USED TO TREAT RARE DISEASES.DISEASES WHO IS APPOINTED BY THE GOVERNOR.

ONE REPRESENTATIVE OF THE BIOPHARMA INDUSTRY.INDUSTRY WHO IS APPOINTED BY THE PRESIDENT OF THE SENATE.

ONE REPRESENTATIVE OF A HEALTH INSURER.INSURER WHO IS APPOINTED BY THE PRESIDENT OF THE SENATE.

ONE MEMBER OF THE SCIENTIFIC COMMUNITY WHO IS A MEDICAL RESEARCHER WITH EXPERIENCE CONDUCTING RESEARCH ON RARE DISEASES.DISEASES AND WHO IS APPOINTED BY THE SPEAKER OF THE HOUSE OF REPRESENTATIVES.

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2380ONE 16.MENTAL HEALTH PROVIDER WITH EXPERIENCE TREATING PATIENTS WITH RARE DISEASES IN THIS STATE WHO IS APPOINTED BY THE SPEAKER OF THE HOUSE OF REPRESENTATIVES.

ONE MENTAL HEALTH PROVIDER WITH EXPERIENCE TREATING PATIENTS WITH RARE DISEASES IN THIS STATE.

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- AND2 THERAPEUTICS- COMMITTEE,H.B. TO IMPROVE COVERAGE OF DIAGNOSTICS AND FACILITATE ACCESS TO NECESSARY HEALTH CARE PROVIDERS WITH EXPERTISE IN TREATING RARE DISEASES.

2380 PHARMACY AND THERAPEUTICS COMMITTEE, TO IMPROVE COVERAGE OF DIAGNOSTICS AND FACILITATE ACCESS TO NECESSARY HEALTH CARE PROVIDERS WITH EXPERTISE IN TREATING RARE DISEASES.

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2380 1.

Notwithstanding section 36-142.01, Arizona Revised Statutes, as added by this act, the initial terms of members of the Arizona rare disease advisory councilcouncil: are:

FiveFor termspersons endingappointed pursuant to section 36-142.01, subsection A, paragraphs 2, 3, 4, 5 and 7, Arizona Revised Statutes, as added by this act, end on January 1, 2028.

SixFor termspersons endingappointed pursuant to section 36-142.01, subsection A, paragraphs 1, 6, 9, 10 and 12, Arizona Revised Statutes, as added by this act, end on January 1, 2029.

SixFor termspersons endingappointed pursuant to section 36-142.01, subsection A, paragraphs 8, 11, 13, 14, 15 and 16, Arizona Revised Statutes, as added by this act, end on January 1, 2030.

The governorappointing entity shall make all subsequent appointments as prescribed by statute.

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2380 4.

-APPROVED 3BY -THE GOVERNOR MAY 12, 2025.

FILED IN THE OFFICE OF THE SECRETARY OF STATE MAY 12, 2025.

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