There is a category of health policy that arrives with a name so reassuring it barely gets questioned. Prescription Drug Affordability Board. Who could object to affordability?
Some of these boards have now been operating for seven years. In the newest episode of State of the Patient, Terry Wilcox asks the question that follows naturally from that: in all that time, have they saved a single patient a single dollar?
The answer turns out to depend entirely on a mechanism most patients have never had explained to them.
Bridget Dandaraw-Seritt of ACT NOW Colorado has sat through more of these board meetings than many of the people who vote in them. She describes an appointed board that reviews medications and determines whether it considers them affordable. Some of those boards have the authority to set an upper payment limit.
The phrase sounds like a ceiling on what a patient pays. According to Bridget, it isn't. An upper payment limit caps what an insurer reimburses a pharmacy or infusion center. It does not change the price of the medication, and it does not cap the patient's share. The patient, as she puts it, remains on the hook for the rest.
She raises a second consequence that surprised even her. Formulary decisions are shaped by rebates flowing back to pharmacy benefit managers and insurers. Cap the reimbursement, and the rebate arrangement can change — and when it does, the list of medications a plan covers can shift underneath the patient.
Bridget also notes something worth sitting with: to date, no state seats a patient as a voting member of its board.
Tiffany Westrich-Robertson, who leads AiArthritis and helped build the coalition behind this work, has been participating in these state reviews for years. She describes noticing a gap between the advertising and the machinery — campaigns paired with patient hardship stories, and a process that didn't appear to move money back into patients' pockets.
Her explanation of why is the sharpest detail in the episode. The legislation, she says, routes benefit through the healthcare system or the state. Read the fine print, and the patient does not have to be the beneficiary — because it's an "or."
She is careful, and fair, about the people involved. The board members are volunteers. Most of them, she says, will tell you they took the role because they wanted to help patients, and she believes them — they were told this was about saving patients money. Some are now recognizing the disconnect themselves.
When patients were invited into these state reviews, Tiffany found the questions were built for yes-or-no answers, with no room to explain. So her team built a survey that had room. Five hundred and thirty-seven patients responded.
Out of it came something that had not existed before: a definition of affordability written by patients. Not the list price. Whether insurance covers the medication. Whether the deductible is high enough to put treatment out of reach even with coverage. Whether copay assistance counts toward that deductible. Whether an insurer switches a stable patient to a different medication for non-medical reasons.
Two findings stand out. Almost a quarter of respondents reported paying more than one out-of-pocket amount for the same drug — not just across a year, but across the lifetime of being on it. Among those patients, 51% described that same prescription as both affordable and unaffordable at different points. If the same medication is both, the problem was never only the price.
And when patients who stopped a medication over cost were asked to explain why, 95% pointed to insurance design — coverage removal, a high deductible, step therapy, or a copay accumulator or maximizer that keeps assistance from counting.
This is the part of the conversation that deserves more attention than it usually gets. Tiffany's team took the findings to the boards, and the responses split.
Several are trying, and she credits them. Notably, a few boards do not have price-cap authority written into their legislation — what are sometimes called non-upper-payment-limit tracks. Those, she says, are the ones listening to patients and pursuing solutions that reach out-of-pocket costs directly.
One board declined, and explained why: it is not meant to focus on patients' out-of-pocket costs. Its charge is capping costs at the system level for insurers.
That is a candid answer, and worth crediting as candor. It is also a description of a policy doing something other than what its name suggests.
Vanessa Lathan leads the Patient Inclusion Council and has spent fifteen years in public health and health policy. She lives with an autoimmune condition, and she offers the observation that reframes the entire affordability conversation.
She has never been on a biologic. She had not heard of one until she joined this coalition. Most of her autoimmune journey, she says, has been spent with heating pads and prayer. The survey, she notes, found that communities of color are frequently not offered specialty treatments at all — meaning a lower price does nothing for a medication that was never on the table.
She adds a detail that should stop anyone who works in this field: she considers herself privileged — a health policy professional with access and information — and she still learned more about her own condition from fellow patients than from the healthcare system.
Many boards lean on a quality-adjusted life year — a QALY — when weighing whether a medication is worth covering. Bridget describes the scale: one is perfect health, zero is no benefit at all. Most people living with chronic illness, she notes, will never score a one.
She has been on the same biologic for twelve years. It works. Its value, she says, is scored at 0.13.
What 0.13 looks like in practice: a spine that has fully collapsed from a rare genetic disorder, and a woman still walking, still gardening, using a wheelchair for distance, still participating in her own life. Getting up to change the channel. Taking her grandchildren outside.
There is a person behind every number in this debate, and the number cannot see her.
The coalition behind this work — the Patient Inclusion Council and EACH, which Patients Rising is part of — is collecting patient stories through the Patient Truth Campaign, in whatever form a patient can offer: video, writing, a few sentences.
As Vanessa puts it, advocacy looks like almost anything. Talking to the coalition counts. Sharing a post counts. There is nothing too small.
If your state has one of these boards, or is considering one, meeting your legislators matters — because many of them believe the word on the label.
Affordability is not a price. It is a relationship between coverage, deductible, assistance, income, and life. And if a policy is built in our name, patients have to be the ones it is actually for.
Share your story with the Patient Truth Campaign: [PIC STORY FORM LINK]
[Full Transcript] [Terry's Substack Post]
The State of the Patient Podcast is produced by Patients Rising. New episodes every other Tuesday. Follow the show on Apple Podcasts, Spotify, YouTube, and wherever you listen.