This Week in Drug Pricing: Three Major Defeats to Pharma’s Legal Campaign Against Medicare Negotiation, ORPHAN Cures Gets A Re-Score – and it’s Even Worse Than What We Thought, PhRMA Hits New Q2 Lobbying Record, Cystic Fibrosis Medication Medication Price Gouging, and ICYMI

Welcome to the Week in Review.

Three Major Defeats to Pharma’s Legal Campaign Against Medicare Negotiation

This week saw three blows to pharma’s multi-million dollar legal campaign against the Medicare Negotiation Program. On Wednesday, the Sixth Circuit U.S. Court of Appeals blocked a legal challenge brought by various Chambers of Commerce. The case was originally dismissed in August 2024 by a federal district judge in Ohio, with this week’s decision upholding the lower court’s ruling. Less than 24 hours later, the Second Circuit U.S. Court of Appeals denied Boehringer Ingelheim’s attempt to stop the program in its tracks. The three-judge panel — which included two judges appointed by President Trump and one Clinton appointee — affirmed last July’s lower court decision that the Medicare Negotiation Program is fully constitutional and lawful. Finally, the U.S. District Court for the Western District of Texas rejected a sweeping constitutional challenge from PhRMA, affirming that the program is a lawful and appropriate exercise of congressional authority. These decisions mark the 10th, 11th, and 12th court rulings in favor of patients and against the industry’s attacks on Medicare negotiation. — [The Hill, U.S. Court of Appeals, P4AD, Litigation Tracker, First Word Pharma, FightPharma, Public Citizen, Fierce Healthcare, IP Watchdog, Bloomberg Law, Endpoints News, POLITICO, Bloomberg Law, Healthcare Finance, The Hill, POLITICO, Inside Health Policy]

ORPHAN Cures Gets A Re-Score – and it’s Even Worse Than What We Thought

Last weekend, The Wall Street Journal revealed that the Congressional Budget Office (CBO) will be re-scoring the ORPHAN Cures Act to account for its impact on even more blockbuster drugs than previously anticipated, meaning its already massive $5 billion price tag is set to grow. When first scored, the ORPHAN Cures Act was projected to cost taxpayers nearly $5 billion over the next decade, allowing drugmakers to reap the rewards of a weakened Medicare Negotiation Program. This policy change is not needed, as Medicare negotiation already preserves all the incentives for rare disease research under the 42-year-old Orphan Drug Act. With the upcoming re-score revealing the full scale of this pharma-backed carveout, patients have already been mobilizing to stop another potential pharma giveaway: the harmful EPIC Act, which would further undermine the negotiation program’s ability to lower drug prices. — [Wall Street Journal, P4AD, Congress]

PhRMA Hits New Q2 Lobbying Record

After breaking the record for the most spent in a single quarter with $12.9 million in Q1, PhRMA followed it up with $7.58 million last quarter, the highest Q2 spend in its history. This investment is being deployed in an attempt to roll back provisions in the 2022 prescription drug law and keep prices extortionately high for patients. At the same time, drugmakers are ramping up efforts to deflect blame for high drug prices onto pharmacy benefit managers (PBMs). With three lobbyists per member of Congress, the pharmaceutical industry is only escalating its campaign to drown out the voices of patients — but P4ADNow continues fighting to elevate the voices of our advocates and continue fighting back against pharma’s monopoly. — [POLITICO, Endpoints, Sludge, WSJ, KFF Health News]

Cystic Fibrosis Medication Medication Price Gouging

Pharma’s mid-year price hikes are hurting patients across the country. This week, we’re highlighting one particularly egregious example: Vertex Pharmaceuticals raised prices on its two flagship cystic fibrosis (CF) medications, Trikafta and Kalydeco, to over $28,400 per month — a hike more than 2.5 times the rate of inflation. Trikafta is Vertex’s top-selling drug by far, with the company stating that its 2024 revenue of over $11 billion is “primarily driven by [Trikafta’s] continued performance.” Vertex has long been under fire from patients and doctors for its predatory pricing practices, and it’s the sole manufacturer of drugs that can add years to the life expectancy of people with CF. They’re choosing to maximize profits by drastically hiking prices on vulnerable patients with no other alternatives to fight their rare disease. — [Vertex, Boston Globe, BioPharma Dive, Fierce Pharma]

In Case You Missed It

New reporting from the Washington Post revealed that the Trump administration is planning a five-year experiment to cover GLP-1 weight loss drugs under Medicare and Medicaid. According to documents from CMMI, the proposed plan would allow state Medicaid and Medicare plans to cover drugs like Ozempic, Wegovy, Mounjaro, and Zepbound for weight management purposes. — [Washington Post]

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

Nicholas from Ellenton, Florida

Condition: Multiple Sclerosis (MS)

Drug: Vumerity ($1,949/month)

In his wife Diane’s words: “Due to the high cost charge differences and bills, between our insurance and Medicare Part D, Nicholas has not been able to get Vumerity and has seen his health decline. As a retired nurse, I just can’t let this happen, but the entire situation has consumed my life, from looking for other grants, reaching out to organizations, and calling our insurance plan to dispute the coverage.”

“We hope that the Medicare Negotiation Program will continue to lower the costs of selected medications, and hopefully include MS drugs in the negotiation process.”

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