H.R. 5539 · 118th Congress
ORPHAN Cures Act
Introduced on Sep 18, 2023 by John Joyce (R-PA-13). 13 cosponsors, 7 of them from another party. Latest action (Dec 17, 2024): Referred to the Subcommittee on Health.
- Stage
- Introduced
- Introduced
- Sep 18, 2023
- Cosponsors
- 13
- 7 from the other party
- Policy area
- Health
Progress
The furthest stage the measure reached. Simple and concurrent resolutions do not go to the President.
- Introduced
- 2Reported by committee
- 3Passed one chamber
- 4Passed both chambers
- 5Sent to the President
- 6Became law
Official title
To amend title XI of the Social Security Act to expand and clarify the exclusion for orphan drugs under the Drug Price Negotiation Program.
Subjects
- Health care costs and insurance
- Medicare
- Prescription drugs
Summary
The Congressional Research Service has not summarized this measure yet.
Sponsor and cosponsors
Cosponsors by party as of the day they signed on. Original cosponsors signed on the day of introduction.
Democrats · 7
- Wiley NickelD-NC-13original
- Donald G. DavisD-NC-1signed on Oct 19, 2023
- Josh GottheimerD-NJ-5signed on Nov 8, 2023
- Scott H. PetersD-CA-50signed on Nov 8, 2023
- Shri ThanedarD-MI-13signed on Jun 11, 2024
- William R. KeatingD-MA-9signed on Dec 11, 2024
- Mary Sattler PeltolaD-AKsigned on Dec 11, 2024
Republicans · 6
- Kevin HernR-OK-1signed on Oct 19, 2023
- Gus M. BilirakisR-FL-12signed on Nov 8, 2023
- Lloyd SmuckerR-PA-11signed on Nov 8, 2023
- Mariannette Miller-MeeksR-IA-1signed on Nov 28, 2023
- Brian K. FitzpatrickR-PA-1signed on Dec 11, 2024
- Richard HudsonR-NC-9signed on Dec 11, 2024
Roll calls
Recorded votes on the measure. Most measures move by voice vote or unanimous consent, which record no individual positions.
No recorded roll call on this measure: it moved by voice vote or unanimous consent, or has not reached the floor.
History
Every action as published, oldest first. Roll calls link to how each member voted.
- Sep 18, 2023Introduced in House
- Sep 18, 2023Introduced in House
- Sep 18, 2023 · HouseReferred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
- Sep 18, 2023 · HouseReferred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned.
- Sep 22, 2023 · HouseReferred to the Subcommittee on Health.
- Dec 17, 2024 · HouseReferred to the Subcommittee on Health.
Committees
Committees and subcommittees the measure was referred to.
Agencies in its committees' jurisdiction
Analisa's mapping of committee jurisdiction to federal agencies; the bill may touch others, or none of these.
Who lobbied on it
Organizations whose lobbying reports (LD-2) name this measure. Spending is what they reported for those quarters on all issues, not on this measure alone.
- NOVARTIS CORPORATION14 reports$6.9M reported (all issues)Federal contractor: NOVARTIS PHARMACEUTICALS CORPORATION$36.2M in contracts, FY2026AI match · 100%
- ALNYLAM PHARMACEUTICALS, INC.9 reports$220K reported (all issues)
- AstraZeneca Pharmaceuticals LP9 reports$3.8M reported (all issues)Federal contractor: ASTRAZENECA PHARMACEUTICALS LP$500 in contracts, FY2026AI match · 100%
- BIOTECHNOLOGY INNOVATION ORGANIZATION9 reports$8.9M reported (all issues)
- TAKEDA PHARMACEUTICALS AMERICA, INC.9 reports$3.4M reported (all issues)Federal contractor: TAKEDA PHARMACEUTICALS AMERICA, INC.$1.6M in contracts, FY2026AI match · 100%
- PHARMACEUTICAL RESEARCH & MANUFACTURERS OF AMERICA8 reports$37.4M reported (all issues)
- Patients Rising Now8 reports$80K reported (all issues)
- ACADIA PHARMACEUTICALS5 reports$1.7M reported (all issues)
- BIOGEN INC.5 reports$5.1M reported (all issues)
- Daiichi Sankyo, Inc.5 reports$1.5M reported (all issues)Federal contractor: DAIICHI SANKYO, INC$205.9K in contracts, FY2026AI match · 100%
- GSK (fka GLAXOSMITHKLINE INC.)5 reports$6.3M reported (all issues)
- HealthCare Institute of New Jersey5 reports$273.7K reported (all issues)
- JOHNSON & JOHNSON SERVICES, INC.5 reports$8.9M reported (all issues)
- PTC THERAPEUTICS, INC.5 reports$930K reported (all issues)
- SANOFI US SERVICES INC5 reports$7.2M reported (all issues)
- AARP4 reports$19.9M reported (all issues)
- ALEXION PHARMACEUTICALS INC.4 reports$290K reported (all issues)Federal contractor: ALEXION PHARMACEUTICALS INC$733.6K in contracts, FY2026AI match · 99%
- JAZZ PHARMACEUTICALS, INC.4 reports$2M reported (all issues)Federal contractor: JAZZ PHARMACEUTICALS, INC$369.3K in contracts, FY2026AI match · 100%
- LUNDBECK LLC4 reports
- NEUROCRINE BIOSCIENCES, INC.4 reports
- RARE DISEASE COMPANY COALITION4 reports$560K reported (all issues)
- UCB, INC.4 reports$1.1M reported (all issues)
- BEIGENE USA INC.3 reports$540K reported (all issues)
- BIOMARIN PHARMACEUTICAL INC.3 reports$1.1M reported (all issues)
- GILEAD SCIENCES, INC.3 reportsFederal contractor: GILEAD SCIENCES INCAI match · 100%
- IONIS PHARMACEUTICALS, INC.3 reports$160K reported (all issues)
- Travere Therapeutics3 reports
- PFIZER INC.2 reportsFederal contractor: PFIZER INCAI match · 100%
- Personalized Medicine Coalition2 reports$85K reported (all issues)
- THE NEW ENGLAND COUNCIL2 reports$15K reported (all issues)
- Amryt Pharma1 report$40K reported (all issues)
- Astria Therapeutics, Inc.1 report$40K reported (all issues)
- BRIDGEBIO PHARMA INC.1 report$140K reported (all issues)
- BRISTOL-MYERS SQUIBB COMPANY1 report$2.1M reported (all issues)Federal contractor: BRISTOL-MYERS SQUIBB COMPANY$8.8M in contracts, FY2026AI match · 100%
- Fulcrum Therapeutics1 report$60K reported (all issues)
- HARMONY BIOSCIENCES, LLC1 report
- Healthcare Leadership Council1 report$110K reported (all issues)
- Public Citizen1 report$88K reported (all issues)
Reports filed in 2023, 2024, 2025, 2026.
Sources and method
Every figure on this page traces to these records.
- Bill status: bills and resolutions, sponsors, actions, subjects and CRS summaries (U.S. Government Publishing Office (GovInfo), from Congress.gov (Library of Congress))GovInfo Bill Status bulk data (Congress.gov; summaries by the Congressional Research Service) · data current to Oct 3, 2026 · loaded Oct 3, 2026 · license: Public domain (U.S. Government work, 17 U.S.C. § 105)
- Members of Congress, their terms, committees and identifiers (The @unitedstates project (from the Biographical Directory of the U.S. Congress, the House and the Senate))unitedstates/congress-legislators: legislators, committees and current committee membership · data current to Oct 3, 2026 · loaded Oct 3, 2026 · license: CC0 1.0 (public domain dedication)
- House roll-call votes (Office of the Clerk, U.S. House of Representatives)Office of the Clerk, U.S. House of Representatives, roll-call vote records · data current to Oct 3, 2026 · loaded Oct 3, 2026 · license: Public domain (U.S. Government work, 17 U.S.C. § 105)
- Senate roll-call votes and DW-NOMINATE scores (Voteview (UCLA Department of Political Science))Lewis, Jeffrey B., Keith Poole, Howard Rosenthal, Adam Boche, Aaron Rudkin, and Luke Sonnet (2026). Voteview: Congressional Roll-Call Votes Database. https://voteview.com/ · data current to Oct 3, 2026 · loaded Oct 3, 2026 · license: Free to use with the required citation
- Lobbying disclosures (LD-1 registrations, LD-2 quarterly reports, LD-203 contribution reports) (Clerk of the U.S. House of Representatives)Clerk of the House, Lobbying Disclosure Act filings (organizations only; lobbyists' names are not loaded) · data current to Oct 5, 2026 · loaded Oct 5, 2026 · license: Public domain (U.S. Government work, 17 U.S.C. § 105)
- Positions are shown only where a roll call recorded them; voice votes and unanimous consent record none.
- Money and votes are shown side by side; neither explains the other.