Welcome to the Week in Review.

ORPHAN Re-Score Explodes Cost ~$9 Billion, as P4ADNow & AARP Urge Congress Against EPIC

The re-score of the ORPHAN Cures Act by the Congressional Budget Office (CBO) confirmed what patients feared: the bill is even more expensive and more harmful than originally projected. The cost to taxpayers has jumped from $5 billion to $8.8 billion, after the first analysis failed to account for the exemption of blockbuster drugs like Keytruda, Opdivo, and Darzalex from Medicare negotiation. This week Senators Welch, Cortez Masto, and Wyden introduced legislation to repeal the provision in the One Big Beautiful Bill and replace it with a targeted policy: exempting only true rare-disease drugs that account for less than $400 million in annual Medicare spending, rather than the current $200 million threshold. The goal is to preserve incentives for genuine rare-disease innovation while ensuring overpriced blockbusters can still be negotiated. But even as legislators work to correct the damage from ORPHAN, Pharma is already pushing its next attack on Medicare negotiation — the EPIC Act, which would delay negotiation for small-molecule drugs, which make up 90% of all prescriptions. As reported exclusively by The Hill. P4ADNow and AARP sent a joint letter to congressional leadership opposing EPIC, warning that it would have disqualified more than half the drugs already selected for negotiation, including Eliquis, Jardiance, and Ozempic. The industry continues to look for more ways to roll back progress. — [CBO, POLITICO, Senator Welch, Axios, P4ADNow, The Hill, EPIC One-Pager, STAT News, Reuters, Endpoints News, POLITICO, Fierce Healthcare, Common Dreams, Healthcare Finance]

Big Pharma Smashed Yet Another Lobbying Record

PhRMA is continuing to buy influence on Capitol Hill, spending nearly $30 million on lobbying so far this year — with record-breaking individual totals in all three quarters. As the industry continues to lose both in court and in public opinion, it’s clear Pharma now views Congress as its last line of defense. But patients are fighting back: the P4AD community has already sent nearly 54,000 letters urging lawmakers to defend Medicare negotiation and stand with patients, not the industry. — [Washington Post, POLITICO, Endpoints News, POLITICO Pro, Endpoints News]

New I-MAK National Survey Proves Bipartisan Support for Drug Pricing Reform

The Initiative for Medicines, Access and Knowledge (I-MAK) released the findings from their recent survey, showing just how widespread the affordability crisis remains — and how strongly Americans across the political spectrum want change. The data reinforces what we hear from patients every day: the high cost of drugs affects everyone, regardless of party, and voters want lawmakers to act. Among the key takeaways:

The message is clear: lowering drug prices isn’t a partisan issue — it’s an American priority.

Patient Advocate Spotlight: Mary Simmons
Background: Retired state government employee, from Henrico, Virginia
Condition: Acute Lymphoblastic Leukemia (ALL) and Diabetes
Drug: Methotrexate

In her words: “After my extended hospital stay, the medical upkeep and additional prescription and medical costs added up. Shortly after, I finally got social security disability insurance (SSDI) and have received more financial coverage and assistance from Medicare and my dual coverage of my husband’s insurance. Yet prescription copays remain at an all-time high, costing me several hundred dollars a month. Due to costs, I even tried switching my medication regimen from brand-name prescriptions to generics, which ultimately caused more problems, forcing me back on the expensive medications. Something needs to be done. Patients deserve lower prices without the stress of worrying how to pay for necessary things when their health is at a low. Big Pharma greed needs to stop!”

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