Contact Congress about H.R. 946: ORPHAN Cures Act

Some rare-disease drugs could stay out of Medicare price negotiations for more time. The bill pauses the eligibility clock during orphan-drug periods and expands the exemption to drugs used for more than one rare disease.

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ORPHAN Cures Act is a House bill in committee. The latest recorded action: Sponsor introductory remarks on measure. (CR H535-536).

Latest action on H.R. 946: Sponsor introductory remarks on measure. (CR H535-536)

Who this affects: This bill mainly affects people tied most directly to rare-disease drugs. That includes drug companies that make these treatments, Medicare officials who run the negotiation program, and patients who use these medicines. Medicare could have to wait longer to negotiate some prices, while drug makers could get more time outside the program.

Why this matters: This matters because it could delay when Medicare can negotiate lower prices for some rare-disease drugs. That could affect what Medicare spends and how long some drugs stay outside the program. It could also shape business decisions about studying and seeking approval for treatments for more than one rare disease. The bill does not say exactly how prices, access, or availability would change in practice.

Key provisions in H.R. 946

• The government would stop counting time when a drug had excluded orphan-drug status. That time would not count toward when the drug can enter Medicare price negotiation.
• A drug could still get the exemption if it treats one rare disease or several rare diseases. The old rule limited this to drugs used for only one rare disease.
• The bill uses the same meaning of 'rare disease or condition' that already appears in section 526(a)(2) of the Federal Food, Drug, and Cosmetic Act.
• These changes would be made in section 1192(e) of the Social Security Act. That is the part of the law that lists which drugs Medicare must leave out of the Drug Price Negotiation Program.
• The bill covers both regular drugs and biologic products, which are medicines made from living sources. It applies to the timing rules named in section 1192(e)(1)(A)(ii) and (B)(ii).

How Modern Action helps you take action on H.R. 946

You do not have to start with a blank letter. Modern Action turns the bill, your position, and the relevant congressional context into a message you can edit and send. The goal is to make contacting Congress clear, specific, and useful without forcing you to parse bill text or figure out the right office on your own.

Questions people ask about H.R. 946

What is H.R. 946?

Some rare-disease drugs could stay out of Medicare price negotiations for more time. The bill pauses the eligibility clock during orphan-drug periods and expands the exemption to drugs used for more than one rare disease.

How do I support or oppose H.R. 946?

Choose support, oppose, or ask for changes on Modern Action. The action flow drafts the message for you and keeps the wording tied to this bill.

Who should I contact about H.R. 946?

Modern Action uses your location to route the action to the congressional offices relevant to the bill and your representation.

Can Modern Action explain H.R. 946 before I act?

Yes. Modern Action gives you a plain-English summary, current status, and action context before you send anything.