Welcome to the Week in Review.

Pharma’s Continued Attempts to Shrink MFN

It’s been four weeks since Trump sent letters to 17 pharmaceutical companies demanding they align prescription drug prices with other high income nations, and Big Pharma is working hard to avoid any and all concessions or reforms. Pfizer’s Albert Bourla has referred to Trump’s executive order (EO) and letters as a “starting point” for negotiations, and Eli Lilly has responded with plans to significantly raise drug prices in Europe, without making any commitment to reducing prices in the United States. As our own Executive Director Merith Basey said late last week, “unless Pharma is forced to give up any power or ability to raise drug prices, it’s highly unlikely that they will do it on their own.” Let’s not forget that despite their public posturing, drug companies are still aggressively raising prices — with July’s price hike seeing the majority of increases far exceeding the rate of inflation. — [White House, Axios, CNN, Inside Health Policy]

August Recess Ends, New Pharma-Backed Lege Push Begins

Even after receiving a $5 billion handout via the ORPHAN Cures Act (which is expected to increase further with the pending rescore), the industry continues to demand even more. We’re closely watching two pharma-backed bills that could come into play before the end of the year: EPIC and MINI. The harmful Ensuring Pathways to Innovative Cures (EPIC) Act (H.R. 1492) would delay small-molecule drug eligibility for negotiation from 9 to 13 years, keeping prices artificially high for patients for even longer. EPIC would be yet another carveout to Medicare negotiation at the taxpayer’s expense, and another insult at a time when polling shows pharma’s popularity with the public is at an all-time low. The Maintaining Investments in New Innovation (MINI) Act (H.R. 1672) is similar to EPIC, aiming to raise the exclusivity period from 9 to 13 years for genetically targeted technologies (GTTs). Both bills rely on faulty arguments and fearmongering around innovation that doesn’t hold up to scrutiny — and both would sabotage President Trump’s ability to secure a better deal for Americans. If legislation results in higher drug prices for patients and higher costs for the federal government, it can only mean one thing: the rampant reach of pharma. — [Wall Street Journal, P4AD]

ICYMI

It’s a “thankless and lonely gig” being a pharma CEO? Try being a patient on a high cost drug, in a drug pricing system rigged against you. The whining of overpaid pharma CEOs isn’t landing with us given they’re fighting tooth and nail to roll back progress and keep prices high at massive harm to patients.

Patient Advocate Spotlight: Victor

Condition: 22q11.2 deletion syndrome, a rare genetic disorder

Drug(s): Metyrosine ($36,700 / month) — currently unaffordable

Background: 23 year old from Virginia

In her words: 

In his mother Kelly’s words: “Before he got sick, Victor was smart, funny, and determined. In December 2022, after a sinus infection, everything changed. Almost overnight, Victor began hallucinating, became confused, forgot basic skills, lost continence, had significant behavioral changes and could barely speak. We were told he’d return to baseline in “weeks to months”. It’s been almost three years. He endured misdiagnosis after misdiagnosis, before finally learning the truth: 22q11.2 deletion syndrome, a rare genetic disorder.” 

“[Our doctor] recommended metyrosine for Victor because it targets the excess catecholamines driving his symptoms and no other alternatives address this root cause. However, insurance has denied it. Without insurance, 120 capsules cost $36,700 a month; far beyond our reach. Without this medication, Victor will have no quality of life and may ultimately be forced into an institution, a devastating and preventable outcome.” 

“Metyrosine can treat the root cause of these symptoms, it could give Victor the chance to speak again, care for himself, and return to the passions he once loved. Instead, my son is left to suffer because of cost, policy gaps, and a system that fails rare disease patients.” 

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