This week, Patients Rising submitted formal comments to the Centers for Medicare & Medicaid Services on the proposed rule for the next round of Medicare drug price negotiation — the one that will set the rules for 2029 and shape the program for years.
You can read our full letter here. But I want to say a few things in my own voice, because the details of this rule will shape what patients actually pay and how they actually get treated.
Let me start where we always start.
Patients Rising supports Medicare's authority to negotiate drug prices. We fought for lower out-of-pocket costs, and that hasn't changed.
But negotiation was created to lower costs for patients — and how CMS sets these prices, and how it listens to patients along the way, decides whether it actually does that. So we told CMS to judge every piece of this rule by three simple questions.
Here's the uncomfortable part. When Medicare negotiates a lower price, the patient doesn't automatically pay less.
Independent analysis of Medicare claims data has already found that when negotiated prices dropped steeply, patients' out-of-pocket costs often dropped far less — in some cases barely at all. That happens because a fixed copay doesn't fall when a price falls, because a drug can get moved to a worse tier or stuck behind prior authorization, and because savings on one medicine can be quietly offset by higher costs somewhere else in your benefit.
This is the ripple effect we talk about constantly: a price never stays on the page. It moves through what your plan covers, what tier your drug sits on, and what you actually owe at the counter. A program that only measures the price Medicare pays can look like a win on paper while nothing changes for you. So we asked CMS to measure and publicly report whether the savings reach patients — not just whether the government pays less. If Medicare's price drops by half and your cost barely moves, the program hasn't done its job for you yet, and CMS should have to see that and say so.
A lower price is worth very little if you lose the treatment that works for you, or get pushed into a harder, costlier way of getting it.
That's my worry about one specific piece of this rule. Some cancer medicines that used to require a long IV infusion now come as a shot you can get under the skin in minutes, often closer to home. The FDA reviewed those newer versions in their own clinical trials and approved them as distinct medicines. CMS is proposing to treat the shot and the old IV drip as the same drug for pricing.
I understand what CMS is trying to stop — companies gaming the system with trivial tweaks to dodge negotiation. Fair. But this rule, as written, is a shotgun where a scalpel is needed. When you treat a five-minute shot and an all-day infusion as identical, the system's incentives can tip back toward the setting that's easiest to bill — the hospital infusion chair — and a patient who was doing fine getting care close to home can lose that option.
And here's the twist for a program that's supposed to be about affordability: getting pushed back into a hospital infusion setting can leave a patient paying more — travel, missed work, a caregiver's time, facility fees. The sticker price drops; the cost in your life goes up. The people who feel that first are the ones already driving hours for care, or on Medicare through a disability, or depending on a caregiver to get anywhere. So we asked CMS to withdraw that provision as written, narrow it to actually target gaming, and study what it would do to patients before finalizing anything.
CMS has invited patients into this process, and I give them real credit for that. But being invited to speak isn't the same as being heard. We're proud to join other patient organizations in pushing CMS on this.
Patients tell us they show up to CMS's roundtables unsure what's even being asked, get squeezed into ninety minutes with no break, and are steered away from the things that actually define a medicine's value to them — whether they can afford it, whether they can stay on it, whether care is continuous. And after pouring hours into applications and deeply personal testimony, they hear essentially nothing back about whether any of it mattered.
So we asked for concrete fixes: send patients a plain-language briefing before roundtables; widen the conversation to how patients actually define value; build a patient-friendly way to submit written comments instead of forcing people through a process designed for corporate lawyers; and — the one I care about most — publish a Patient Engagement Summary each cycle that tells patients what CMS heard and how it was used. If you're going to ask people to relive the hardest parts of their lives on the record, the least you can do is show them it counted.
We believe Medicare negotiation should be a genuinely good thing for patients. That belief is exactly why we're holding it to a high standard. A program that lowers a price on paper — while patients see little savings, lose the treatment that works for them, or never learn whether their voices mattered — isn't keeping the promise it was built on.