The bill
ORPHAN Cures Act
HR. 946, 119th Congress — read as touching Pharmaceuticals.
Sponsored by
Rep. Joyce, John [R-PA-13]
ID: J000302
Follow the money
The bill
HR. 946, 119th Congress — read as touching Pharmaceuticals.
The sponsor
Every bill has someone who introduced it. That name is where the paper trail starts.
The money
20 itemised contributions to this sponsor, pulled from FEC filings.
The alignment
This bill's text tracks the "Department of Health and Human Services" section, p. 533-535 of the Mandate for Leadership.
Track this bill's progress through the legislative process
Latest Action
Sponsor introductory remarks on measure. (CR H535-536)
February 5, 2025
📍 Current Status
Next: The bill will be reviewed by relevant committees who will debate, amend, and vote on it.
1. Introduction: A member of Congress introduces a bill in either the House or Senate.
2. Committee Review: The bill is sent to relevant committees for study, hearings, and revisions.
3. Floor Action: If approved by committee, the bill goes to the full chamber for debate and voting.
4. Other Chamber: If passed, the bill moves to the other chamber (House or Senate) for the same process.
5. Conference: If both chambers pass different versions, a conference committee reconciles the differences.
6. Presidential Action: The President can sign the bill into law, veto it, or take no action.
7. Became Law: If signed (or if Congress overrides a veto), the bill becomes law!
Another masterpiece of legislative theater, courtesy of the esteemed members of Congress. Let's dissect this farce and expose the underlying disease.
**Main Purpose & Objectives:** The ORPHAN Cures Act (because who doesn't love a good acronym?) claims to "expand and clarify" the exclusion for orphan drugs under the Drug Price Negotiation Program. In plain English, it's a bill that supposedly helps patients with rare diseases by making it easier for pharmaceutical companies to develop and market treatments.
**Key Provisions & Changes to Existing Law:** The bill amends Section 1192(e) of the Social Security Act to exclude "former orphan drugs" from certain calculations. This means that if a drug was once considered an orphan drug (i.e., used to treat a rare disease or condition), but is no longer, it won't be counted towards the time limit for price negotiations. The bill also broadens the definition of orphan diseases and conditions.
**Affected Parties & Stakeholders:** The usual suspects are involved:
* Pharmaceutical companies: They'll benefit from the expanded exclusion, which will allow them to maintain higher prices for their "orphan" drugs. * Patients with rare diseases: Supposedly, they'll have better access to treatments. But let's be real, this bill is more about lining the pockets of pharma execs than actually helping patients. * Taxpayers: As always, they'll foot the bill for these overpriced "orphan" drugs.
**Potential Impact & Implications:** This bill is a classic case of " regulatory capture," where special interests (pharmaceutical companies) manipulate the system to their advantage. By expanding the exclusion for orphan drugs, Congress is essentially giving pharma companies a free pass to charge exorbitant prices for treatments that might not even be effective.
The real disease here is greed, and this bill is just another symptom of a corrupt system that prioritizes profits over people's lives. The ORPHAN Cures Act is nothing more than a cleverly crafted piece of legislation designed to make pharmaceutical companies richer while pretending to help patients.
In medical terms, this bill is akin to prescribing a placebo to a patient with a terminal illness – it might make them feel better for a little while, but ultimately, it's just a waste of time and resources. And the politicians behind this bill? They're just the incompetent med students who can't even be bothered to read the label on the medication they're peddling.
Diagnosis: Legislative Theater-itis, with symptoms of Greed-induced Regulatory Capture and a healthy dose of Cynicism towards the American public. Prognosis: Poor, unless we start holding our elected officials accountable for their actions.
Rep. Joyce, John [R-PA-13]
Congress 119 • 2024 Election Cycle
No PAC contributions found
No organization contributions found
No committee contributions found
This bill has 10 cosponsors. Below are their top campaign contributors.
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Hub layout: Politicians in center, donors arranged by type in rings around them.
Showing 70 nodes and 35 connections (53 secondary connections hidden)
Total contributions: $101,450
Showing top 16 donors by contribution amount
Which industries are materially affected by specific provisions in this bill. 1 helped.
Section 2 expands the exclusion for orphan drugs under the Drug Price Negotiation Program by allowing time during which a drug was designated for multiple rare diseases to not count toward the negotiation eligibility period, thereby extending market exclusivity and delaying price negotiations, which benefits pharmaceutical manufacturers.
For each industry this bill affects, here's what the sponsor (Rep. Joyce, John [R-PA-13])received from donors associated with that industry during the 2022–present cycles. Donations are not proof of intent — they are a record of who funds the people writing the law.
This bill shows semantic similarity to the following sections of the Project 2025 policy document.AI-enhanced analysis provides detailed alignment ratings.
AI Analysis:
"The ORPHAN Cures Act aligns with Project 2025's broader HHS goals of promoting innovation and reducing regulatory burdens in healthcare, particularly through incentives for pharmaceutical development. While not explicitly mentioned in the provided Project 2025 excerpts, the bill's focus on expanding treatment access and encouraging private-sector innovation in rare diseases shares thematic overlap with conservative health reform priorities emphasizing market-based solutions and patient access."
— 500 — Mandate for Leadership: The Conservative Promise 32. Owcharenko Schaefer, “Medicaid at 55: Understanding the Design, Trends, and Reforms Needed to Improve the Health Care Safety Net.” 33. Brian Blase, “Managed Care in Medicaid: Need for Oversight, Accountability, and Reform,” Paragon Health Institute Policy Brief, October 13, 2022, https://paragoninstitute.org/wp-content/uploads/2022/10/20221012- Managed-Care-in-Medicaid-Need-for-Oversight-Accountability-and-Reform-FOR-DISTRIBUTION-V2.pdf (accessed February 13, 2023). 34. Owcharenko Schaefer, “Medicaid at 55: Understanding the Design, Trends, and Reforms Needed to Improve the Health Care Safety Net.” 35. 42 U.S. Code § 1315, https://www.law.cornell.edu/uscode/text/42/1315 (accessed March 17, 2023). 36. Chad D. Savage and Lee S. Gross, “Direct Primary Care: Update and Road Map for Patient-Centered Reforms,” Heritage Foundation Backgrounder No. 3635, June 28, 2021, https://www.heritage.org/sites/default/ files/2021-06/BG3635.pdf. 37. H.R. 133, Consolidated Appropriations Act, 2021, Public Law No. 116-260, 116th Congress, December 27, 2020, Division BB, Title I, https://www.congress.gov/116/plaws/publ260/PLAW-116publ260.pdf (accessed March 17, 2023). 38. Doug Badger, “On Surprise Medical Bills, Congress Should Side with Consumers, Not Special Interests,” Heritage Foundation Commentary, January 31, 2020, https://www.heritage.org/health-care-reform/ commentary/surprise-medical-bills-congress-should-side-consumers-not-special. 39. Edmund F. Haislmaier and Abigail Slagle, “Premiums, Choices, Deductibles, Care Access, and Government Dependence Under the Affordable Care Act: 2021 State-by-State Review,” Heritage Foundation Backgrounder No. 3668, November 2, 2021, https://www.heritage.org/sites/default/files/2021-11/BG3668.pdf. 40. U.S. Department of the Treasury, Internal Revenue Service; U.S. Department of Labor, Employee Benefits Security Administration; and U.S. Department of Health and Human Services, “Transparency in Coverage,” Final Rule, Federal Register, Vol. 85, No. 219 (November 12, 2020), pp. 72158–72310, https://www.govinfo.gov/ content/pkg/FR-2020-11-12/pdf/2020-24591.pdf (accessed March 17, 2023). 41. David N. Bernstein and Robert E. Moffit, “New Price Transparency Rule Will Help Transform America’s Health Care System,” Heritage Foundation Commentary, November 1, 2020, https://www.heritage.org/health-care- reform/commentary/new-price-transparency-rule-will-help-transform-americas-health-care. 42. Sluzala and Haislmaier, “Lessons from COVID-19: How Policymakers Should Reform the Regulation of Clinical Testing.” 43. Ibid. 44. Most recently enacted in H.R. 2471, Consolidated Appropriations Act, 2022, Public Law No. 117-103, 117th Congress, March 15, 2022, Division H, Title V, §§ 506–507, https://www.congress.gov/117/plaws/publ103/ PLAW-117publ103.pdf (accessed March 17, 2023). 45. President Joseph R. Biden Jr., Executive Order 14079, “Securing Access to Reproductive and Other Healthcare Services,” August 3, 2022, in Federal Register, Vol. 87, No. 154 (August 11, 2022), pp. 49505–49507, https:// www.govinfo.gov/content/pkg/FR-2022-08-11/pdf/2022-17420.pdf (accessed March 16, 2023). 46. Planned Parenthood, 2020–2021 Annual Report, p. 27, https://www.plannedparenthood.org/uploads/ filer_public/40/8f/408fc2ad-c8c2-48da-ad87-be5cc257d370/211214-ppfa-annualreport-20-21-c3-digital.pdf (accessed March 22, 2023). 47. Ibid., pp. 30 and 31. Total revenue of $1,714.4 million (p. 30) minus $1,580.7 million in total expenses (p. 31) yields $133,7 million. 48. Ibid., p. 28. 49. Ibid., p. 30. 50. H.R. 372, Protecting Life and Taxpayers Act of 2023, 118th Congress, introduced January 17, 2023, https://www. congress.gov/118/bills/hr372/BILLS-118hr372ih.pdf (accessed March 17, 2023). 51. 42 U.S. Code § 18023, https://www.law.cornell.edu/uscode/text/42/18023 (accessed March 17, 2023). 52. H.R. 3128, Consolidated Omnibus Budget Reconciliation Act of 1985, Public Law No. 99-272, 99th Congress, April 7, 1986, Title IX, Subtitle A, Part 1, Subpart B, § 9121, https://www.congress.gov/99/statute/STATUTE-100/ STATUTE-100-Pg82.pdf (accessed March 17, 2023). 53. H.R. 8070, Rehabilitation Act of 1973, Public Law No. 93-112, 93rd Congress, September 26, 1973, https://www. congress.gov/93/statute/STATUTE-87/STATUTE-87-Pg355.pdf (accessed March 17, 2023). — 501 — Department of Health and Human Services 54. U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, Office of Civil Rights, and Office of the Secretary, “Special Responsibilities of Medicare Hospitals in Emergency Cases and Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities,” draft of Proposed Rule, January 14, 2021, https://www.hhs.gov/sites/default/files/infants-nprm.pdf (accessed March 17, 2023). 55. H.R. 26, Born-Alive Abortion Survivors Protection Act, 118th Congress, introduced January 9, 2023, https:// www.congress.gov/118/bills/hr26/BILLS-118hr26pcs.pdf (accessed March 17, 2023). 56. H.R. 7, No Taxpayer Funding for Abortion and Abortion Insurance Full Disclosure Act of 2023, 118th Congress, introduced January 9, 2023, https://www.congress.gov/118/bills/hr7/BILLS-118hr7ih.pdf (accessed March 17, 2023). 57. S. 401, Conscience Protection Act of 2021, 117th Congress, introduced February 24, 2021, https://www.congress. gov/117/bills/s401/BILLS-117s401is.pdf (accessed March 17, 2023). 58. U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, and Office of the Secretary, “Nondiscrimination in Health Programs and Activities,” Notice of Proposed Rulemaking; Notice of Tribal Consultation, Federal Register, Vol. 87, No. 149 (August 4, 2022), pp. 47824–47920, https://www.govinfo. gov/content/pkg/FR-2022-08-04/pdf/2022-16217.pdf (accessed March 17, 2023). 59. Ibid., p. 47916. 60. The regulation was not finalized before the end of the Administration. U.S. Department of Agriculture, Food and Nutrition Services, “Revision of Categorical Eligibility in the Supplemental Nutrition Assistance Program (SNAP),” Proposed Rule, Federal Register, Vol. 84, No. 142 (July 24, 2019), pp. 35570–55581, https:// www.federalregister.gov/documents/2019/07/24/2019-15670/revision-of-categorical-eligibility-in-the- supplemental-nutrition-assistance-program-snap (accessed March 17, 2023). 61. 45 Code of Federal Regulations § 75.300(c) and (d), https://www.ecfr.gov/current/title-45/subtitle-A/ subchapter-A/part-75/subpart-D/subject-group-ECFR911e5e1a30bfbcb/section-75.300 (accessed March 17, 2023). 62. H.R. 1750, Child Welfare Provider Inclusion Act of 2021, 117th Congress, introduced March 10, 2021, https:// www.congress.gov/117/bills/hr1750/BILLS-117hr1750ih.pdf (accessed March 17, 2023), and S. 656, Child Welfare Provider Inclusion Act of 2021, 117th Congress, introduced March 10, 2021, https://www.congress.gov/117/bills/ s656/BILLS-117s656is.pdf (accessed March 17, 2023). 63. S. 3949, Trafficking Victims Protection Reauthorization Act of 2022, Public Law No. 117-348, 117th Congress, January 25, 2023, https://www.congress.gov/117/plaws/publ348/PLAW-117publ348.pdf (accessed March 17, 2023). 64. Kelsey Y. Santamaria, “Child Migrants at the Border: The Flores Settlement Agreement and Other Legal Developments,” Congressional Research Service In Focus No. IF11799, April 1, 2021, https://crsreports.congress. gov/product/pdf/IF/IF11799 (accessed March 17, 2023). 65. Report, Building a Happy Home: Marriage Education as a Tool to Strengthen Families, Social Capital Project Report No. 1-22, March 2022, p. 17, https://www.jec.senate.gov/public/_cache/files/3d102525-6f0d-48ed- 92f4-d71edd468ad6/building-a-happy-home.pdf (accessed March 17, 2023). The cover of the report reflects that the Social Capital Project is “[a] project of the Joint Economic Committee – Republicans.” 66. See, for example, Alan J. Hawkins, “Are Federally Supported Relationship Education Programs for Lower-Income Individuals and Couples Working? A Review of Evaluation Research,” American Enterprise Institute, September 2019, https://www. congress.gov/117/plaws/publ228/PLAW-117publ228.pdf (accessed March 17, 2023). 67. H.R. 8404, Respect for Marriage Act, Public Law No. 117-228, 117th Congress, December 13, 2022, https://www. congress.gov/117/plaws/publ228/PLAW-117publ228.pdf (accessed March 17, 2023). 68. Madison Marino, “Over 1,000 Safety Violations Mar Head Start. Children Deserve Better,” Heritage Foundation Commentary, November 10, 2022, https://www.heritage.org/education/commentary/over-1000-safety- violations-mar-head-start-children-deserve-better. 69. American Hospital Association v. Becerra, 596 U.S. ___ (2022), https://www.supremecourt.gov/ opinions/21pdf/20-1114_09m1.pdf (accessed March 17, 2023). 70. U.S. Department of the Treasury, Internal Revenue Service; U.S. Department of Labor, Employee Benefits Security Administration; and U.S. Department of Health and Human Services, Centers for Medicare and Medicaid Services, “Coverage of Certain Preventive Services Under the Affordable Care Act,” Notice of Proposed Rulemaking, Federal Register, Vol. 88, No. 22 (February 2, 2023), pp. 7236–7281, https://www. govinfo.gov/content/pkg/FR-2023-02-02/pdf/2023-01981.pdf (accessed March 17, 2023).
AI Analysis:
"The ORPHAN Cures Act focuses on expanding orphan drug exclusions under Medicare's Drug Price Negotiation Program, while Project 2025 seeks to repeal that same program and reform Medicare Part D by reducing government involvement in drug pricing. The bill works within the IRA framework that Project 2025 opposes, resulting in only weak thematic alignment around drug access and innovation."
— 465 — Department of Health and Human Services 1. Make Medicare Advantage the default enrollment option. 2. Give beneficiaries direct control of how they spend Medicare dollars. 3. Remove burdensome policies that micromanage MA plans. 4. Replace the complex formula-based payment model with a competitive bidding model. 5. Reconfigure the current risk adjustment model. 6. Remove restrictions on key benefits and services, including those related to prescription drugs, hospice care, and medical savings account plans.26 Legacy Medicare Reform. Legislation reforming legacy (non-MA) Medicare should: l Base payments on the health status of the patient or intensity of the service rather than where the patient happens to receive that service. l Replace the bureaucrat-driven fee-for-service system with value- based payments to empower patients to find the care that best serves their needs. l Codify price transparency regulations. l Restructure 340B drug subsidies27 toward beneficiaries rather than hospitals. l Repeal harmful health policies enacted under the Obama and Biden Administrations such as the Medicare Shared Savings Program28 and Inflation Reduction Act.29 Medicare Part D Reform. The Inflation Reduction Act (IRA) created a drug price negotiation program in Medicare that replaced the existing private-sector negotiations in Part D with government price controls for prescription drugs. These government price controls will limit access to medications and reduce patient access to new medication. This “negotiation” program should be repealed, and reforms in Part D that will have meaningful impact for seniors should be pursued. Other reforms should include eliminating the coverage gap in Part D, reducing the government share in — 466 — Mandate for Leadership: The Conservative Promise the catastrophic tier, and requiring manufacturers to bear a larger share. Until the IRA is repealed, an Administration that is required to implement it must do so in a way that is prudent with its authority, minimizing the harmful effects of the law’s policies and avoiding even worse unintended consequences.30 Medicaid. Over the past 45 years, Medicaid and the health safety net have evolved into a cumbersome, complicated, and unaffordable burden on nearly every state. The program is failing some of the most vulnerable patients; is a prime target for waste, fraud, and abuse; and is consuming more of state and federal budgets. The dramatic increase in Medicaid expenditures is due in large part to the ACA (Obamacare), which mandates that states must expand their Medicaid eligibility standards to include all individuals at or below 138 percent of the federal poverty level (FPL), and the public health emergency, which has prohibited states from performing basic eligibility reviews. The overlap of available benefits among the various health agencies has led to a complex, confusing system that is nearly impossible to navigate—even for recipients. Recipients are often faced with a “welfare cliff” of benefit losses as they earn above a certain amount, which is contrary to the fundamental purpose of empowering individuals to achieve economic independence. Benefits increasingly involve nonmedical services such as air conditioning and housing, many of which are already handled by departments other than HHS. Improper payments within Medicaid are higher than those of any other federal program. These payments are evidence of the inappropriateness of Medicaid’s expansion, which, stemming largely from public health emergency maintenance of effort (MOE) requirements and the Affordable Care Act, has crowded out the primary targets of these programs: those who are most in need. True health care reform cannot be accomplished in a bureaucratic silo or only through Medicaid and health safety net programs. Reform of the tax code is also essential to genuine, effective reform of our health care system. All components of the health care system should be part of the reform efforts, and it is imperative that the system be modified to assist states with their current programs. Therefore, the next Administration should: l Reform financing. Allow states to have a more flexible, accountable, predictable, transparent, and efficient financing mechanism to deliver medical services. This system should include a more balanced or blended match rate, block grants, aggregate caps, or per capita caps. Any financial system should be designed to encourage and incentivize innovation and the efficient delivery of health care services. Federal and state financial participation in the Medicaid program should be rational, predictable, and reasonable. It should also incentivize states to save money and improve the quality of health care.
AI Analysis:
"The ORPHAN Cures Act focuses on orphan drug incentives and rare disease definitions, while the Project 2025 excerpt primarily addresses abortion data reporting, gender identity, generic drug competition, laboratory-developed tests, drug shortages, and abortion pills. Overlap is limited to general FDA drug regulation themes."
— 456 — Mandate for Leadership: The Conservative Promise abortion providers and whether better prenatal physical, mental, and social care improves infant outcomes and decreases abortion rates, especially among those who are most vulnerable. The Ensuring Accurate and Complete Abortion Data Reporting Act of 20239 would amend title XIX of the Social Security Act and Public Health Service Act to improve the CDC’s abortion reporting mechanisms by requiring states, as a condition of federal Medicaid payments for family planning services, to report streamlined variables in a timely manner. The CDC should immediately end its collection of data on gender identity, which legitimizes the unscientific notion that men can become women (and vice versa) and encourages the phenomenon of ever-multiplying subjective identities. FOOD AND DRUG ADMINISTRATION (FDA) The FDA’s mission includes ensuring the safety and efficacy of drugs, biological products, and medical devices. Federal Laws That Shield Big Pharma from Competition. Because generics generally cost far less than brand-name drugs, consumers begin to save money as soon as a generic product comes on the market. The vast majority are very afford- able with 93 percent of generic products costing $20 or less. Savings would be even higher under proposals that prevent brand-name man- ufacturers from slowing down or impeding the entrance of generic products into the marketplace. Specifically, the FDA should prohibit pharmaceutical companies from purposely sitting on their legally available right to be the first to sell generic versions of their drugs. Additionally, Congress should create legal remedies for generic companies to obtain samples of brand-name products for their generic development efforts and should prohibit meritless “citizen petitions” submitted by manufacturers to delay approval of a generic competitor.10 Approval Process for Laboratory-Developed or Modified Medical Tests. Learning from the failed early COVID-19 testing experience, Congress and the FDA should focus on reforming laws and regulations governing medical tests, especially with respect to laboratory-developed tests. Commercial tests are developed with the intention of being widely marketed, distributed, and used, while laboratory-developed tests are created with the intention of being used solely within one laboratory. A test developed by a lab in accordance with the protocols developed by another lab (non-commercial sharing) currently constitutes a “new” laboratory-developed test because the lab in which it will be used is different from the initial developing lab. To encourage interlab- oratory collaboration and discourage duplicative test creation (and associated regulatory and logistical burdens), the FDA should introduce mechanisms through which laboratory-developed tests can easily be shared with other laboratories with- out the current regulatory burdens.11 — 457 — Department of Health and Human Services The “laboratory-developed tests” category currently encompasses a range of possible tests, many of which would be characterized more appropriately as “lab- oratory-modified tests” because they are not truly novel tests but rather modified versions of existing tests. To avoid stifling innovation and access to medical care, the applicable statutes and regulations should be revised to facilitate greater access to such modified tests.12 Finally, the FDA has long held that it has regulatory authority over such tests, while others have argued that they should be considered clinical services regulated by the Centers for Medicare and Medicaid Services (CMS). The FDA currently has regulatory authority over in vitro diagnostics, and under the Clinical Lab- oratory Improvement Amendments (CLIA),13 the CMS ensures that labs meet analytical validity standards for test methods. Congress, the FDA, and the CMS need to clarify and disentangle overlapping authorities over tests to eliminate regulatory confusion.14 Drug Shortages. The very thin profit margins and the regulatory burdens associated with generic drug manufacturing discourage inventory and capacity investments by manufacturers and contribute to drug shortages. HHS and the FDA should encourage more dependable generic drug manufacturing. The FDA should expand its current pass/fail approach to drug facility inspec- tions into a graded system that recognizes manufacturers that exceed minimum standards by investing in improving production reliability. The FDA should also add facility codes to drug packaging and construct a searchable database that cross-references product codes and facility codes. That would enable wholesalers and pharmacy benefit managers to identify and preference drugs manufactured at more reliable facilities, thus encouraging generic drug manufacturers to compete on reliability as well as on price. For its part, HHS should exempt multi-source generic drugs from requirements to pay rebates to Medicaid and other federally funded health programs, as those provisions penalize new investments in expanding manufacturing capacity when supply is unable to meet demand.15 Additionally, FDA and NIH should promote efficacy trials of new applications for generic drugs, which might include NIH fund- ing such trials or conducting its own. Abortion Pills. Abortion pills pose the single greatest threat to unborn chil- dren in a post-Roe world. The rate of chemical abortion in the U.S. has increased by more than 150 percent in the past decade; more than half of annual abortions in the U.S. are chemical rather than surgical. The abortion pill regimen is typically a two-part process. The first pill, mifepris- tone, causes the death of the unborn child by cutting off the hormone progesterone, which is required to sustain a pregnancy. The second pill, misoprostol, causes con- tractions to induce a delivery of the dead child and uterine contents, usually into a toilet at home. The abortion-pill regimen is currently approved for up to 70 days
Showing 3 of 5 policy matches
Policy matches are calculated using a hybrid approach: initial candidates are found using semantic similarity between bill summaries and Project 2025 policy text, then an AI model (Llama 3.1 70B) provides detailed alignment ratings and analysis. Ratings range from 1 (minimal alignment) to 5 (very strong alignment). This analysis does not imply direct causation or intent.