Patients Rising

08/30/2026

When policymakers talk about making prescription drugs more affordable, an upper payment limit sounds pretty straightforward.

Put a cap on the price. Patients pay less.

Except that isn’t what the cap actually does.

Bridget Dandaraw-Seritt has spent years following Prescription Drug Affordability Boards in Colorado, and she says one of the biggest misconceptions is what happens when a board sets an upper payment limit.

“It does not change the price of the medication, and it only caps what your insurance reimburses the pharmacy or infusion center. You are still going to be on the hook for the rest of that money.”

And there’s another problem Bridget wants patients to understand: the people most affected by these decisions don’t necessarily have a vote in making them.

Bridget joins Terry Wilcox the State of the Patient to explain how PDABs work, what upper payment limits actually cap and what can happen when policies created in the name of patients move forward without patients at the table.

Listen to Built in Our Name: PDABs and the Patient Truth: https://hubs.ly/Q04vq6qM0

08/28/2026

“I have been in a lot of rooms where a policy gets sold, and I have learned to listen for a particular sound,” says Patients Rising Chief Mission Officer Terry Wilcox. “It’s the sound of a name doing work that the mechanism underneath it can’t do.”

Prescription Drug Affordability Board. Say it out loud. It’s airtight. What are you going to be, against affordability?

So in this recent episode of State of The Patient, Terry looks underneath the name with three women who have been living there for years:

A policy can carry your name and still not be for you.

08/27/2026

What does “affordability” mean if a patient never gets access to the treatment in the first place?

Vanessa Lathan has spent 15 years working in public health and health policy. She also lives with an autoimmune condition.

And even with that background, Vanessa says she learned more about her own condition from fellow patients than she had from healthcare professionals.

Her experience also exposed another side of the prescription drug affordability debate: access to treatment is not distributed equally.

“I have never been on a biologic. I’d never even heard of one until I came here. Most of my autoimmune journey has been spent with heating pads and prayer, trying to figure it out, because I haven’t been given a medication that’s been effective.”

Vanessa joins Terry Wilcox on State of the Patient for a conversation about who gets included in the affordability debate, who gets left out and why patient experiences have to be part of the policies created in their name.

Listen to Built in Our Name: PDABs and the Patient Truth: https://hubs.ly/Q04vq5bL0

08/26/2026

Prescription Drug Affordability Boards have been created in states across the country with a pretty compelling promise to make prescription drugs more affordable for patients.

But there’s an important question hiding inside the word affordability.

Affordable for whom?

Tiffany Westrich-Robertson and her team decided to ask patients themselves. Their research found that affordability is shaped by far more than the price of a drug, including insurance coverage, deductibles, copay assistance and whether an insurer forces someone to switch treatments.

And that creates a problem when policies promoted with stories about patients struggling to afford their medications aren’t necessarily designed to solve the problems those patients described.

As Tiffany put it, “They’re citing patient hardship stories with solutions that are not going to fix those hardship stories. If they said it’s about us, then it better be about us.”

Tiffany joins Terry Wilcox on the newest episode of State of the Patient to unpack what patients said when someone finally asked them what prescription drug affordability actually means.

Listen here: https://hubs.ly/Q04vp3T50

08/25/2026

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.

Read more and listen to this episode here:

Prescription Drug Affordability Boards were sold as patient relief. Three patient advocates explain what these boards actually cap — and who benefits.

08/21/2026

That's a wrap on comment week. Two letters filed — one to the Senate on drug prices, one to CMS on Medicare negotiation — and one test applied to everything in both:

What changes at the pharmacy counter?

We backed PBM accountability. We backed Medicare negotiation. We asked for a level playing field between pills and infusions. We asked CMS to protect access and show patients their voices counted.

And we asked both for the thing we care about most: measure whether savings actually reach patients — and publish it, every year. Because right now, every drug pricing reform gets scored on what it saves the government, and not one gets measured on what it saves you.

Catch up on everything 👉

To The Senate Finance Committee: https://hubs.ly/Q04tTVDs0

To CMS: https://hubs.ly/Q04tTxbS0

08/20/2026

73%.

That's how many appealed prescription rejections in Medicare Part D were overturned, according to the HHS Inspector General.

Think about what that number means. When patients pushed back on a denial, nearly three out of four times the plan was wrong — and the patient waited weeks, on average, for medicine their doctor had already prescribed. Many patients never appeal at all. They just go without.

We asked the Senate to hold plans accountable: make rejection rates public so you can compare plans before you enroll, approve automatically when plans miss deadlines, and stop making patients re-win approval every year for medicine they're already stable on.

If this has happened to you or someone you love, our comment tells Congress your story is not rare 👉 https://hubs.ly/Q04tJd_B0

08/19/2026

Here's something we told both the Senate and CMS this week, because it's the same problem in two places:

How you take your medicine is not a technicality.

A pill is taken at home, on your schedule — and in Medicare, it lives in Part D, where your yearly out-of-pocket costs are now capped. An infusion means a drive, a port, hours in a chair, often a caregiver's day off — and it usually lives in Part B, where your 20% coinsurance has NO annual cap.

So when federal policy makes pills less attractive to develop (the Senate issue), or treats a 5-minute injection as "the same drug" as an all-day IV (the CMS issue), the person who ends up back in the infusion chair — with the bigger bill — is the patient.

We asked the Senate to make the negotiation clock modality-neutral, and we asked CMS to narrow its rule and study the patient impact first.

Both comments 👉

The Senate Finance Committee: https://hubs.ly/Q04ty2Cb0

To CMS: https://hubs.ly/Q04ty8SM0

08/18/2026

Senate Finance asked how to lower drug prices. CMS asked how to run Medicare negotiation. We told both the same thing:

A price is not a cost.

You don't pay the price Medicare negotiates. You don't pay the price the PBM marks up. You pay a coinsurance percentage — and that's where the savings quietly disappear.

The Senate's own data proves it: Part D rebates hit $77 billion in 2024, and as rebates grew, average patient cost-sharing went UP.

So we told the Senate which proposals actually reach your pharmacy counter (starting with basing your cost-sharing on the real net price), and we told CMS to measure — every cycle, publicly — whether negotiation savings reach patients at all.

Read both 👉

Our letter to the Senate Finance Committee: https://hubs.ly/Q04tdnY70

Our letter to CMS: https://hubs.ly/Q04tdl110

08/17/2026

Today we filed two comments in Washington — one with the Senate Finance Committee on its plan to lower drug prices, and one with CMS on how Medicare negotiation will run in 2029.

Both got the same answer, and it fits in one sentence: a price is not a cost.

You don't pay the price Medicare negotiates. You don't pay the price the plan books. You pay a copay or a coinsurance percentage — and unless the savings are carried all the way to your pharmacy counter, they never reach you at all.

That's what both letters are about: making sure the savings actually arrive. Read them here 👉

Our Comment Letter to the Senate Finance Committee: https://hubs.ly/Q04td19y0

Our Letter to CMS: https://hubs.ly/Q04tcS3T0