Welcome to the Week in Review.

Analysis: After OBBB Weakened Medicare Negotiation for Rare Disease Drugs, Pharma Hikes Their Prices

A new P4AD analysis found that pharmaceutical companies raised prices on 208 rare disease drugs in the first week of the year, just months after the ORPHAN Cures Act was signed into law, weakening Medicare’s ability to negotiate lower prices for many rare disease drugs. ORPHAN Cures permits drugs that treat multiple rare conditions to be excluded from negotiation, even if they are blockbuster drugs that generate billions in revenue. While each individual condition treated by this class of drugs may be rare, an estimated 1 in 10 Americans lives with a rare disease. The inclusion of this provision in the 2025 reconciliation package will result in extremely high-cost treatments like cancer drugs Keytruda ($12,031/dose) and Opdivo ($7,787/dose) being excluded from negotiations, despite expectations they’d be selected. P4AD’s analysis is one of three in a series examining how pharmaceutical companies are hiking prices on lifesaving medications across disease areas while fighting reforms designed to lower them. — [P4AD]

FTC Settles Second PBM Insulin Price-Gouging Case

The FTC reached a second settlement against another major PBM this week, this time with CVS Caremark, over allegations that CVS Caremark, in conjunction with Cigna’s Express Scripts, and OptumRx artificially inflated insulin prices at the expense of patients. The terms of CVS’s agreement are still pending final approval and largely redacted, but the settlement follows a broader FTC investigation that found that PBMs generated over $7.3 billion by inflating the prices of 51 lifesaving drugs between 2017 and 2022. While the case against OptumRx is still ongoing, the settlements with both Express Scripts and now CVS Caremark are welcome news. — [STAT News, FTC, Axios]

Merck Spends $26 Billion on Acquisitions as Keytruda Patent Cliff Approaches

As the patent expiration for the best-selling cancer drug, Keytruda, approaches, Merck is moving aggressively to protect its revenue — finalizing its third biotech acquisition of the year, this time for blood and bone cancer-focused company Terns Pharmaceuticals. The three deals total $26 billion. The strategy is clear: build a pipeline of new, patent-protected cancer drugs ahead of Keytruda’s 2028 patent expiration, when its exclusivity begins to expire. Keytruda accounts for a significant share of Merck’s revenue, and rather than lowering prices on existing treatments, the company is investing billions to secure the next generation of high-priced, monopoly-protected drugs. The drug industry is one of the most profitable industries in the world, making their common arguments that any reforms undermine innovation fall flat. — [BioSpace, Reuters, Axios, West Health]

New Study: Medication Nonadherence Dropped with IRA Reforms

A new study in the American Journal of Managed Care (AJMC) finds that capping out-of-pocket costs under the Inflation Reduction Act is already improving medication adherence. Focusing on key provisions — including eliminating the 5% coinsurance in catastrophic Medicare coverage and introducing an annual out-of-pocket cap ($3,300 in the first year, now reduced to $2,100) – the study shows patients were more likely to fill and consistently take their prescriptions once costs were lowered. The findings add to growing evidence that reducing out-of-pocket costs improves patient access and adherence — and strengthen the case for extending similar protections beyond Medicare.— [AJMC]

In Case You Missed It

Senators Shaheen (D-NH), Warnock (D-GA), Collins (R-ME), and Kennedy (R-LA) reintroduced a bipartisan bill that would cap insulin costs at $35 per month for Americans with private insurance beginning in 2027 — similar to the cap passed by the IRA for patients on Medicare. — [POLITICO, The Hill]

Patient Advocate Spotlight: Karolina Chorvath

Background: Patient advocate from Boston, MA

Condition: Crohn’s disease, severe chronic migraines, arthritis, sacroiliitis, fibromyalgia, psoriasis, and chronic painIn Her Words: “Something they don’t tell you when you’re diagnosed: You may not be able to pay for your treatment. I am fortunate enough to have great insurance coverage, but I still remember the day I received a bill for a chemotherapy treatment I received. It was for $100,000. The number hit me in the chest. How could anyone afford that? I keep this bill as a reminder: The prescription drug pricing system is broken.”

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