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Better Access to Rare Disease Drugs: New Pricing Rules

This act aims to improve access to drugs for rare diseases by changing how they are treated in the drug price negotiation program. This could encourage pharmaceutical companies to develop new therapies, potentially leading to more treatment options for individuals with rare conditions.
Key points
Orphan drugs (for rare diseases) will have modified rules for price negotiations, potentially impacting their availability.
The time a drug was designated for a rare disease will not count towards the period after which its price can be negotiated, giving companies more time to recoup research costs.
The definition of an orphan drug has been expanded to include drugs for one or more rare diseases, potentially increasing the number of drugs covered by these special rules.
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Expired
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Additional Information
Print number: 118_HR_5539
Sponsor: Rep. Joyce, John [R-PA-13]
Process start date: 2023-09-18
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Summarized by: gemini-2.5-flash-preview-05-20
Source data: api.congress.gov
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OFFICIAL LEGAL TITLE

ORPHAN Cures Act

FREQUENTLY ASKED QUESTIONS

What is the official ID of this bill?

The official print number for this legislation is 118_HR_5539.

Which chamber initiated this legislation?

This legislation was initiated in the House of Representatives.

When did the legislative process begin?

The process officially started on 2023-09-18.

What are the main provisions?

Key points include:

  • Orphan drugs (for rare diseases) will have modified rules for price negotiations, potentially impacting their availability.
  • The time a drug was designated for a rare disease will not count towards the period after which its price can be negotiated, giving companies more time to recoup research costs.
  • The definition of an orphan drug has been expanded to include drugs for one or more rare diseases, potentially increasing the number of drugs covered by these special rules.
What is the specific legal status?

The current status is Expired.

Where can I read the full text of this legislation?

The full official text is available at: View full text

Who is the primary sponsor?

The primary sponsor is Rep. Joyce, John [R-PA-13].

What is the latest detailed status?

The latest detailed status is: Referred to the Subcommittee on Health.

Is this summary verified?

Yes. This content was analyzed by AI and verified by the Lustra Judge System on 2025-12-25.

CATEGORIES

Health