Real patients.
Real harm.
Real stories.
Patient Protector is a forum for Americans and their friends and families who've faced real harm at the hands of our nation's crumbling (and profit-driven) healthcare system.
Together, our shared experiences can make a difference—they help tell the true, and tragic, story of what it's like to be a patient in America.
Check out the real stories below.
Click on each image to watch the accompanying video!
The Journey
The story of our PBM reform Journey and getting Justice for our son's death.
He Was 22. Denied His Medication. 6 Days Later, He Was Gone. | Cole’s Story
Cole Schmidtknecht was just 22 years old when the healthcare system failed him.
His asthma medication — Advair — suddenly cost over $500. He left the pharmacy with nothing. No one helped. Five days later, he suffered a severe asthma attack. After six days in the ICU, Cole died on January 21, 2024.
His death was 100% preventable.
This is not just Cole’s story — it’s a national crisis. Pharmacy Benefit Managers (PBMs) are the unregulated middlemen deciding who gets medicine and who doesn’t. They chose profit. Cole lost his life.
Alec Smith Should Still Be Here Smith Should Still Be Here
Alec Smith was just 26 years old when he died from diabetic ketoacidosis — not because he had diabetes, but because he couldn’t afford his insulin.
After aging off his mother’s insurance, Alec faced $1,300 a month for life-sustaining insulin. He tried to ration it. He didn’t survive.
His death sparked a movement in Minnesota — the Alec Smith Insulin Affordability Act — but across the country, millions still struggle.
This is not just Alec’s story. This is America’s failure.
Wisconsin parents lose young son to PBM abuse
Cole was a one-of-a-kind kid... until his life was cut short in January 2024, when he suffered a severe asthma attack after going without his expensive maintenance inhaler for just a few days. His passing was completely preventable, but certainly not the first or last we'll see due to pharmacy benefit manager (PBM) abuse. Read more about Cole's incredible life story here.
Shanon Schmidtknecht speaks of son Cole's passing and begs others to take action
"PBMs are controlling your insurance. They're controlling what medications your insurance can provide to you. They're controlling how much it costs. They're controlling whether a generic can be provided to you, what alternatives can be provided to you, if alternatives can be provided to you. And they're costing lives. We are just one story of probably thousands of stories."
Pharmacist explains the everyday tragedy of PBM abuse
"That's the hardest part about being a pharmacist is when you get these medications that you learn about in school, all the benefits of them and then someone comes to get it and they can't even be close to affording it, in some cases."
Dan shares about his several negative experiences with PBMs while managing his type I diabetes and heart conditions
"Medicines and medical coverage are extremely important to me. Without them, I don't live."
Woman says her son couldn't afford his insulin—now he's dead
"Even though Alec never told her he was struggling to pay for his insulin, she still feels like she should have known. She said she's dealing with that guilt by advocating for other Type 1 diabetics.
The price of insulin, a life-saving drug for diabetics, tripled between 2002 and 2013. Since 2008 three of the top makers raised the list price of insulin at least 10 times."
Health insurer admits "mistake"—and still sticks disabled veteran with $110,000 in medical bills
"When companies make a mistake, they’re supposed to own it and make things right for the customer.
When Blue Cross Blue Shield of Illinois made a big mistake, they stuck a disabled veteran with more than $110,000 in medical bills."
PBMs force Sue, a diabetic, to pay more for a less effective medicine
"In 2018, I was on Invokana [...] When it came time to register for the 2019 year, I was told if I wanted Invokana [to be covered], I had my doctor sign a form for the insurance company for a waiver, and they said they would waive and cover it, but it would be at full price. The Invokana was doing fabulous, it was keeping my A1C under control... Started on the Jardiance [that was more affordable] on the first of January 2019, and since then it has been a steady climb quarterly when I go have my A1C done.
I've been paying the higher price for a drug that doesn't work as well."
Ann has to drive 1 hour due to her PBM's restricted pharmacy network
"It's very inconvenient. We would like to be able to go to any pharmacy that we choose to."
Ken discusses how PBMs make it difficult to choose between affording his medication or fulfilling basic daily needs to survive
"I went to get my prescriptions and I found out what one of my drugs was gonna cost and it was a ridiculous amount of money, and I decided I was gonna go to a cheaper form of drug [...].
I've only got about 10 years left of my life I figure—I'm 81 years old—my kids, I don't know how they'll be able to afford drugs if they keep going the way they are. We need to get something done so drugs are affordable for people."
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