An Act reenacting and amending the act of July 7, 2017 (P.L.285, No.14), entitled "An act establishing the Rare Disease Advisory Council and providing for its powers and duties; and providing for duties of the Department of Health, the Insurance Department, the Department of Human Services and the Department of Education."
HB 1527 updates the existing Rare Disease Advisory Council established in 2017, clarifying its structure and responsibilities. The bill directly affects patients with rare diseases and requires coordination among the Department of Health, Insurance Department, Department of Human Services, and Department of Education. Key provisions mandate the council to advise state agencies on rare disease research, treatment access, insurance coverage, and resource allocation. It also specifies how departments must collaborate on policies impacting rare disease patients, ensuring a unified state approach.
Bill status
passed
3 of 5 stages cleared
Introduction
May 2025
Committee Review
Jul 2025
House Passage
Jun 2025
Senate Passage
Governor
Introduced May 30, 2025
Last action Jul 17, 2025
Maddy AI version diff · 2 comparisons
What changed between versions
Printer's No. PN2011
→
Printer's No. PN2148
·
4 edits
MODERATE
This bill updates the Rare Disease Advisory Council by adding new members appointed by Senate and House leaders, reorganizing the council's structure to include specific industry and community representatives, and extending the council's expiration date to July 1, 2028. The changes aim to broaden the council's expertise and ensure continued oversight of rare disease research and care in Pennsylvania.
Scope change
The bill's scope expanded to include new appointees from legislative leadership and specific representatives from the biopharmaceutical, hospital, and insurance industries, broadening the council's composition beyond its original state agency and public member structure.
ELIGIBILITY
Added four new members to the advisory council: individuals appointed by the Majority and Minority Leaders of both the Senate and the House of Representatives.
Specified detailed requirements for public members, including representatives from hospitals, the health insurance industry, the biopharmaceutical industry, the scientific community, parents of children with rare diseases, individuals with rare diseases, and patient organizations.
TIMELINE
Extended the expiration date of the act from June 30, 2025, to July 1, 2028, and added provisions for retroactive application to June 30, 2025.
REQUIREMENT
Established new requirements for the appointment of public members and a chairperson within 60 days of the effective date, as well as provisions for reimbursement of travel expenses.
Floor votes · House Jun 24, 2025
How they voted
203–0
Passed
Total votes 203
Jun 24, 2025
D
Democratic102
100% Yea
R
Republican101
100% Yea
Vote distribution
All Yea
All Nay
Mixed
No data
Full legislative history
Actions timeline
Total actions
15
Key actions
6
Committee
8
Amendments
1
Jul 17, 2025
Committee
Re-referred to Appropriations
upper
Jul 16, 2025
Upper · Passed
Reported as amended
upper
Jun 25, 2025
Committee
Referred to Health & Human Services
upper
Jun 25, 2025
Lower · Passed
Third consideration and final passage
lower
Jun 25, 2025
Lower · Passed
Re-reported as committed
lower
Jun 24, 2025
House · Passed
House Vote: pass (203-0)
house
Jun 24, 2025
Committee
Re-committed to Appropriations
lower
Jun 24, 2025
Lower · Passed
Re-reported as committed
lower
Jun 10, 2025
Committee
Re-committed to Rules
lower
Jun 10, 2025
Lower · Passed
Reported as committed
lower
May 30, 2025
Committee
Referred to Health
lower
1 primary · 13 co-sponsors
Sponsors
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