This week, Patients Rising filed comments with the Senate Finance Committee Minority Staff on its Request for Information about lowering prescription drug prices.

The RFI is a serious document. Forty-two pages, dozens of specific policy options, real citations. Committee staff spent months on it and talked to more than seventy organizations before they wrote a word. Whatever you think of the politics, that is how policy is supposed to get made.

So I want to be precise about what we told them, because it wasn't "no," and it wasn't "yes."

It was: a price is not a cost, and this document is almost entirely about prices.

The distinction the whole fight turns on

The RFI covers nearly every price in the drug supply chain. The price the manufacturer charges. The price Medicare negotiates. The price the plan books. The price the wholesaler marks up. The price the private labeler assigns. The price the pharmacy gets reimbursed.

Here is the thing about all of those prices: you don't pay any of them.

You pay a coinsurance percentage. Or a copay tier. Or a deductible. Or a share calculated off a benchmark number that has no reliable relationship to what anyone in the chain actually paid. Between every price in that document and the number on your receipt sits your benefit design — and that is where savings quietly get absorbed.

I'm not speculating. The Committee's own RFI makes the case. It reports that Part D rebates hit an estimated $77 billion in 2024. It also cites research finding that as rebates grew, average patient cost-sharing went up by about $13 per prescription.

Rebates went up. Patient costs went up with them.

That is the entire problem in one sentence, and it will repeat itself with every price reform in that document unless Congress builds a way to carry the savings the last mile.

Watch what happens as the program scales

Take Medicare negotiation — which we support as the law of the land, and which we're not relitigating.

The RFI reports that the first round saved taxpayers about $6 billion and saved seniors about $1.5 billion out of pocket. Roughly four to one.

Then it reports the second round: $12 billion for taxpayers, $685 million for beneficiaries. Roughly seventeen to one.

I'm not questioning the estimates. I'm asking everyone to notice the direction. As the program gets bigger, the share reaching patients gets smaller.

There are mechanical reasons for that. A fixed copay doesn't fall when a price falls. A drug can be moved to a worse tier. Savings can be recaptured elsewhere in your benefit. None of that is an argument against negotiation. It's an argument that negotiation by itself lowers what the government pays, and gets described to patients as though it lowered what they pay.

What we asked for instead

Our comment sorts every proposal in the RFI into three piles: the ones that reach the counter, the ones that won't unless Congress attaches a delivery mechanism, and the patient problems the RFI never mentions.

Five things in there reach the counter:

1. Calculate your cost-sharing on net price, not list. This is the big one. Plans are shifting patients from copays to coinsurance fast — coinsurance on preferred brand drugs in standalone Part D plans went from 10 percent of plans in 2020 to 72 percent in 2024. Under a copay, price cuts never reach you. Under coinsurance, price inflation lands directly on you. The market has moved patients into the worst of both, and net-price cost-sharing is the only structural fix.
2. Cap chronic care costs — as one monthly cap, not a separate cap per drug. Picture the person this is actually for. She isn't managing one condition. She's managing five. A stack of $35 caps still adds up to a bill that equals the sum of her diagnoses. And cap out-of-pocket costs in Traditional Medicare, which remains the only major coverage in this country with no annual limit on what you can be asked to pay.
3. Expand Extra Help — and fix enrollment. Raise it to 200 percent of poverty and kill the asset test, which currently tells low-income seniors that having $18,000 in savings and affording medication are mutually exclusive. But eligibility means nothing without enrollment. Enroll people automatically using records the government already has.
4. Bring cost-plus pricing to generics — and stop punishing patients who find a better price. About one in ten generic prescriptions in this country is now filled outside of insurance, because insurance costs more than not using it. People are paying premiums and walking past their own coverage. Our ask: no patient should ever pay more with insurance than in cash, and cash purchases should count toward the deductible.
5. Hold plans accountable for pharmacy rejections. The HHS Inspector General found that 73 percent of appealed Part D rejections were overturned. That is not a close-call rate. That's a system where denial is a first-line cost control and patients pay for it in untreated weeks — an average of 14 to 24 days for people who eventually won.

And four things the RFI never mentions

340B. A $100 billion program in 2025 — up 23 percent in a single year, second only to Part D among federal drug programs — and it appears once in this RFI, in a parenthetical. Eighty percent of those purchases went to disproportionate share hospitals. There is no requirement that a single dollar of that discount reach the patient whose prescription generated it, and no reporting that would let Congress find out. We asked the Committee to apply the exact transparency standard it wants to apply to PBMs.

Copay accumulators, maximizers, and alternative funding programs. Assistance money meant for you, collected and not credited to what you owe. Your obligation paid twice.

Predictability. Congress built a smoothing program so patients wouldn't get hit with a huge bill in January. Fewer than 1 percent of Part D enrollees are using it. Notification isn't enrollment. Make it automatic.

And nobody is measuring any of this. Every reform in that document will be scored on program savings. Not one of them will be measured against what happened to your out-of-pocket costs, because nobody is required to report it. We asked for an annual report comparing the change in the price to the change in what patients actually paid. It costs almost nothing. It's the only way anyone will ever know if this worked.

The pill penalty, from the patient's side of it

One more thing we told them, because everyone else argues it from a boardroom and we're going to argue it from a kitchen table.

Under current law, a pill becomes eligible for Medicare negotiation four years before an infused biologic does. Industry calls this the "pill penalty" and wants it fixed at thirteen years. Payers say the R&D numbers don't show a problem. Both sides have spreadsheets.

Here's what neither spreadsheet contains: a pill is taken at home. On your schedule. Without a driver, without a port, without four hours in an infusion chair, without a day off work you may not have. And in Medicare, the pill lives in Part D — where your annual out-of-pocket costs are now capped — while the infusion usually lives in Part B, in a hospital outpatient department, with facility fees and a 20 percent coinsurance that has no cap at all. When development shifts from the pill to the infusion, you don't just lose convenience. You get moved to the exact setting where your costs are highest and least limited.

And it does shift. These are for-profit companies. If one path offers two more years of protected revenue than the other, capital notices — that's not a scandal, it's arithmetic. Wishing companies weren't profit-driven is not a policy. Pointing the incentive somewhere other than at the patient is. And no, you can't just fix it later: anyone who thinks turning an approved infusion into a pill — or even into a single shot — is a formality has never tried it. Modality gets chosen early, and patients live with that choice for the life of the drug.

Here's the part that makes the disparity worse than "9 versus 13." Biologics carry twelve years of exclusivity under existing law, so their 13-year negotiation clock lands roughly where biosimilar competition could start anyway. Small molecules typically face generic entry at about 12.5 to 13.5 years — which means their 9-year clock bites three to four years before the market would have cut the price on its own. One clock runs alongside competition. The other runs ahead of it. That's not parity with a footnote. That's a structural penalty on the pill.

And it quietly undermines the best patient-savings machine we have. The RFI itself worries — correctly — that faster negotiation could scare off biosimilar developers, and proposes incentives to fix it. The exact same math already works against generics today: if the negotiated price kicks in years before a generic could launch, the price the generic would undercut has already been lowered, and the business case shrinks. Generic competition cuts prices 70 to 90 percent, permanently, with no program to run. The Committee should extend to generics the same worry it already extends to biosimilars.

One more honest note. The RFI cites studies showing R&D went up after the IRA. Fine — but nobody, on any side, should be drawing conclusions yet. Drug development takes ten to fifteen years, by the Committee's own math. Decisions being made right now will show up as approvals — or as gaps — in the late 2030s. Three years of investment data can't measure a pipeline effect with a decade of lag. What we can evaluate today is the incentive's structure. And structurally, no one has ever offered a patient-based reason why the pill should carry the penalty.

So we told the Committee: make the timeline modality-neutral. Whether parity lands at nine years or thirteen is a budget-and-innovation judgment that belongs to Congress — our test speaks to the structure of the incentive, not the number. What is ours is this: federal law should not put a thumb on the scale against the form of medicine patients can actually take at home.

Where this leaves us

We told the Committee some things it will like and some things it won't. We supported PBM accountability. We supported negotiation. We opposed the pill penalty — arguing the structure, and leaving the number to Congress.

It's all the same test. Does it lower what you pay at the counter, and does it make that cost clearer and more predictable? Applied honestly, that test will sometimes put us next to people we usually disagree with, and sometimes across from people who fund us. Our funders are listed on our website. We'd rather be read with that in front of you.

Congress has gotten very good at lowering prices. It has not yet gotten good at lowering costs. Those are different jobs, and only one of them shows up at your pharmacy.

Patients Rising's full comment to the Senate Finance Committee is available here. Comments were due August 17, 2026.