Welcome to the Week in Review.

Gene Therapy Prices Soar & Access Remains Limited

Fierce Pharma’s latest ranking of the most expensive drugs in the U.S. underscores the rapid escalation in launch prices, driven primarily by gene therapies priced between $2.2 million and $4.25 million per dose. While some of these treatments face other hurdles to patient uptake, the price tag itself is a major barrier – especially when the same drugs often launch at significantly lower prices in countries like Spain and Brazil. P4AD has long pushed to rein in high launch prices so medical breakthroughs are affordable for the patients who need them. — [Fierce Pharma, P4AD]

Three Years of Drug Price Reforms

Tomorrow marks the third anniversary of the 2022 Prescription Drug Law — the historic law that, for the first time, gave Medicare the power to negotiate lower drug prices, capped insulin at $35 a month for Medicare beneficiaries, established a $2,000 annual out-of-pocket cap for Medicare drug costs, and made vaccines free for people with Medicare. Patients are already seeing the impact: over 10 million people received free vaccines in 2023, an estimated 1.5 million people benefited from the insulin cap in its first year, and more than 11 million people are expected to save in 2025 because of the out-of-pocket cap, and there are more savings to come. The first round of negotiated prices will take effect in January 2026, saving patients and taxpayers billions, with billions more in savings in subsequent years expected. However, Big Pharma continues to spend millions to overturn these monumental reforms — and P4AD is working alongside our patient community to defend them. What patients are saying about the law:

Lynn Scarfuto takes Imbruvica (drug included in the first round of negotiation) and reached the $2,000 cap: “I hit the $2,000 cap in January — and now I pay $0.”

Update On Imported Drugs Tariffs

The Trump administration’s probe into pharmaceutical imports and potential sector-specific tariffs — which could eventually reach 250% — is now likely weeks away, despite earlier timelines. Meanwhile, President Trump issued an executive order directing health officials to secure a six-month domestic supply of active pharmaceutical ingredients (APIs) for about 26 critical drugs, with plans to expand to a broader list of 86 essential medicines. Currently, only 10% of U.S. prescription drug APIs are made domestically, raising concerns about both supply chain security and potential impacts on drug prices and patients. — [Reuters, Axios]

In Case You Missed It

In July alone, drug companies hiked prices on 152 medications — and more than 60% of those increases were above the inflation rate. Some drugs, like Novartis’ gene therapy Zolgensma, increased by more than $119,000 in a single hike. Twenty drugs were hiked in both January and July, underscoring that price hikes aren’t about innovation; they’re about profit.

*Introducing a new weekly patient advocate spotlight. These advocates are the heart of our movement and courageously share their stories to drive change. 

Patient Advocate Spotlight: Lisa McRipley, Michigan

Condition: Multiple Sclerosis (MS)

Drug(s): Kesimpta ($8,000/year). Lisa met the $2,000 out-of-pocket cap. 

Background: Former Higher Education Administrator, and current caregiver to her mother. 

In her words: “…the costs of the prescription medication to treat my symptoms add up to several thousand dollars a year, and living on a fixed income, I can’t afford it. My parents and siblings help pay for my groceries and meals to supplement my ability to pay for my medication.. Since [IRA’s] passage, I can see the light at the other end of the tunnel! …  Now, I will pay no more than $2,000 a year!”

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