Why Two Wisconsin Parents Want to Reform Pharmacy Benefits

Zac Schultz:
For decades, the cost of prescription medication has been ever increasing. At the same time, health coverage for medication has been decreasing, forcing patients to make harder decisions about their health. Over the next few weeks, we bring you “Rx Uncovered,” a series from “Here & Now” producer Marisa Wojcik that dives into the complex systems driving these trends and the stories of patients facing life or death choices. Our first story is about a young man with asthma who suddenly had to choose between affording his rent or his medicine.

Bil Schmidtknecht:
Well, we got told, you know, just simply that he would never wake up.

Marisa Wojcik:
Bil and Shanon Schmidtknecht had just heard the worst news of their life.

Bil Schmidtknecht:
That all I remember is collapsing on him and the nurses sliding chairs behind us.

Marisa Wojcik:
Their oldest son, Cole, suffered an asthma attack. His roommate rushed him to the ER and his heart stopped beating two minutes before they arrived.

Bil Schmidtknecht:
When he arrived at the hospital, he was lifeless. He had no pulse. They had to resuscitate him.

Marisa Wojcik:
But the prognosis wasn’t good.

Shanon Schmidtknecht:
They were no longer seeing the brain activity. They were no longer seeing any hope that there would be any type of recovery, that essentially what we saw laying in the hospital of our son was all that he would ever be.

Marisa Wojcik:
The 22-year-old laying in that hospital just days earlier was happy and healthy. Bil and Shannon were mystified.

Shanon Schmidtknecht:
You just want to grab on to him. Like, I just couldn’t — you’re like, this cannot be happening.

Marisa Wojcik:
In the days that followed, Bil and Shanon watched their son fulfill an organ donation before watching him take his final breath.

Shanon Schmidtknecht:
Cole had had asthma his whole life. He was on a great medication that stabilized his asthma for the past decade or more. So we were, like, this cannot be.

Marisa Wojcik:
Still in shock, they didn’t understand how this could have happened and why Cole didn’t have his medication.

Shanon Schmidtknecht:
I will never forget that day.

Marisa Wojcik:
Their quest for answers began as grieving parents. More than a year later, they retell Cole’s story, hoping for change.

Bil Schmidtknecht:
We always felt there was something that was unanswered.

Marisa Wojcik:
The little they did know was from Cole’s best friend and roommate, who said Cole did go to the pharmacy days earlier but couldn’t get his asthma medication refilled.

Shanon Schmidtknecht:
His roommate had said, “I don’t know. We tried to get it a few days ago and he couldn’t afford it. It was like $500.” And we were like, “No, no, no, no. There has to be like…”

Bil Schmidtknecht:
…something.

Shanon Schmidtknecht:
Something happened.

Marisa Wojcik:
Both Cole and his father managed the same chronic asthma their whole lives. They used the same prescription inhaler and they worked for the same company, meaning they had the same health coverage.

Bil Schmidtknecht:
Probably a few weeks later, texted her, said, “Hey, can you swing by the pharmacy and grab my steroid medicine too?”

Shanon Schmidtknecht:
I just remember walking in and she had it written down on a piece of paper: ‘no longer covered by insurance.’ She worked her magic and made a phone call. Even stayed after they were open and, you know, did what she had to do to get something for me to take home so that he had something.

Marisa Wojcik:
This was the first glimpse into what may have happened in the days leading up to Cole’s death. Health coverage from the employer had changed, and with it, the out-of-pocket cost.

Shanon Schmidtknecht:
They were told specifically as employees that it would be a seamless transition. Pharmacy benefits would be seamless. Prescription coverage would be seamless.

Bil Schmidtknecht:
The unique thing, though, is we stayed with the same pharmacy benefit manager.

Marisa Wojcik:
What did change without their knowledge was their prescription benefits formulary. The list of preferred drugs covered by the health plan. These lists are compiled of name brand and generic medications, categorized into tiers. Tier one is the most preferred by the plan and has the lowest co-pays. The higher the tier, the more the patient pays out of pocket.

Shanon Schmidtknecht:
I will never forget that. Leaving that pharmacy and being like, “Oh my God. This is what happened to Cole.”

Marisa Wojcik:
The preventative asthma medication that Cole relied upon was moved to a higher tier that he suddenly could not afford.

Bil Schmidtknecht:
We always assumed that he kind of ran some life choices and said “rent or this” and thought he could do without it. Five days after that, he texted me that he was having a hard time breathing.

Marisa Wojcik:
The parallel details around Bil and Cole’s condition, medication and health plan helped the Schmidtknecht understand how Cole’s pharmacy visit differed from Bil’s.

Shanon Schmidtknecht:
The difference is he didn’t have this pharmacist or any caring, independent pharmacist or whomever to stop for five seconds.

Marisa Wojcik:
Bil’s pharmacist made sure he got the lifesaving medication he needed.

Shanon Schmidtknecht:
She was like, “So we got to figure this out. You’re not leaving here with nothing for him, for Bil.”

Marisa Wojcik:
While no one can know for sure what happened to Cole at the pharmacy that day, many, including Bil’s pharmacist, are convinced.

Bil Schmidtknecht:
Honestly, she believes this is what contributed to Cole’s death was the fact that he didn’t get his medicine walking out of the pharmacy. You know, she, she can’t make that judgment for sure, but she felt that way.

Dwayne Page:
As you could tell, he was the love of our life. One day, him and I were laying in the yard looking up at the sky. He looked at me and said, “Grandpa, when you get to Heaven, would you save me a seat by you?”

Marisa Wojcik:
In March, Senate President Mary Felzkowski reintroduced legislation that she and the Schmidtknecht believe could have helped Cole get his medication.

Mary Felzkowski:
At some point, somebody has to say enough is enough and put some guardrails around this.

Marisa Wojcik:
The bill contains a number of measures aimed at protecting independent pharmacies and adding regulations against pharmacy benefit managers, or PBMs.

Todd Novak:
PBMs are essentially a middleman hired by insurance companies to manage patient prescription drug benefit programs.

Mary Felzkowski:
And they’re actually adversely driving up the cost of drugs and controlling whether or not you get the medication that’s been prescribed to you.

Marisa Wojcik:
Newly dubbed “Cole’s Act,” this is the third time the multi-pronged legislation has been authored.

Mary Felzkowski:
I watched what happened with the first PBM bill. It got really stripped down in the Assembly. We’re not going to allow that to happen this time around. We are going to pass meaningful legislation.

Marisa Wojcik:
One part of the bill deals specifically with drug formularies, saying a plan cannot change a drug’s tier except at the time of coverage renewal. Historically, employer and insurance groups have opposed this legislation, fearing it will increase costs.

Rachel Ver Velde:
Marketplace events occur throughout, throughout the year that impact the price of prescription drugs. By implementing a frozen formulary, payers and plans will be limited in their ability to take advantage of new reduced prices.

Mary Felzkowski:
We’re going to work very hard on showing them, through data from other states that have allowed that, have the same legislation, where it’s actually lowered the cost of health care.

Bil Schmidtknecht:
I can’t believe it’s been almost a year that he’s gone.

Shanon Schmidtknecht:
Yeah.

Marisa Wojcik:
Exactly one year after Cole’s passing, his parents filed a negligence lawsuit against the pharmacy benefit manager and the chain pharmacy where Cole went to try and pick up his inhaler. The complaint says no notification went out that the formulary had changed, and the pharmacist should have offered a generic alternative. It lists a number of points of failure, many of which violate Wisconsin law. In a motion to dismiss, the PBM argues that because Cole’s health plan is what’s called self-funded, these types of employer-sponsored benefits are not technically health insurance. They’re largely not subject to state law, and exclusively a federal concern.

Mary Felzkowski:
We can’t keep waiting for Washington. My constituents can’t afford to keep waiting for Washington on a number of things. And I believe in states’ rights. And it’s time that the states need to step up. You know, we have the fifth highest health care costs in the nation. And our quality does not reflect that.

Marisa Wojcik:
Congressional committees and federal agencies have been sounding some alarm on practices rampant across the industry. In January, the Federal Trade Commission released its latest report investigating the top three PBM companies for inflating drug prices, saying UnitedHealth Group’s Optum Rx, CVS’s Caremark and Cigna’s Express Scripts increased prices hundreds or thousands of times over, putting $7.3 billion back into their pockets from 2017 to 2022. Amid a complex system, Cole’s parents believe more should have been done.

Reporter:
How will this bill have saved Cole?

Mary Felzkowski:
I’m going to defer to Cole’s dad for that.

Bil Schmidtknecht:
The reality is — any portion of a bill that would prevent the slowdown at the pharmacy counter. There’s so many “had he done this” or “had he went to this type of pharmacy.” The ultimate thing, no matter what happens, it was totally preventable. I mean, like, it was preventable. Please don’t let another parent stand where we are today.

Shanon Schmidtknecht:
We’ve just taken a totally different look at so many things in life. It’s all because this cannot happen. This cannot happen to another family.

Marisa Wojcik:
Reporting from Poynette, I’m Marisa Wojcik for “Here & Now.”