For decades, the cost of prescription medications has been ever increasing. At the same time, health coverage of these medications has been decreasing, forcing patients to make harder decisions about their health. Rx Uncovered is 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. The first story is about a young man with asthma, who suddenly had to choose between affording his rent or affording his medicine.

“What we got told on it was just simply that he would never wake up,” said Bil Schmidtknecht.

Bil and his wife Shanonhad just heard the worst news of their life.

“All I remember was collapsing on him and the nurses sliding chairs behind us,” Bil said.

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.

“When he arrived at the hospital, he was all lifeless. He had no pulse — and they had to resuscitate him,” Bil shared.

But the prognosis wasn’t good.

“They were no longer seeing the brain activity. They were no longer seeing any hope that there would be any type of recovery. And so they had told us that essentially what we saw laying in the hospital of our son was all that he would ever be,” Shanon shared.

The 22-year-old who was laying in that hospital just days earlier was happy and healthy, Bil and Shanon were mystified.

“You just want to grab on to him. Like, I just couldn’t. You’re like, this cannot be happening,” Shanon said.

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

“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,” she said.

Still in shock, they didn’t understand how this could have happened, and why Cole didn’t have his medication. Their quest for answers began as grieving parents. More than a year later, they retell Cole’s story, hoping for change.

“We always felt there was something that was unanswered,” Bil said.

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.

“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,” Shanon explained.

“Something,” Bil interjected.

“Something happened,” Shanon added.

Both Cole and Bil managed the same chronic asthma their whole lives. They used the same daily prescription inhaler. And they worked for the same company, meaning they had the same health coverage.

“Probably a few weeks later,” Bill explained alongside Shanon, “texted her, said ‘Hey can you swing by the pharmacy and grab my steroid medicine, too?'”

Shanon described her encounter with the pharmacist.

“I just remember walking in, and she had it written down on a piece of paper: ‘no longer covered by insurance,'” Shanon shared.

“She worked her magic and made a phone call, even stayed after they were open and did what she had to do to get something for me to take home so that he had something,” said Shanon.

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

“They were told specifically as employees that it would be a seamless transition — pharmacy benefits would be seamless, prescription coverage would be seamless,” Shanon said.

“The unique thing though is we stayed with the same pharmacy benefit manager,” added Bil.

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, having the lowest copays, and the higher the tier, the more the patient pays out-of-pocket.

“I will never forget that leaving that pharmacy and being like, my God, that this is what happened to Cole,” Shanon said.

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

“We always assume 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,” Bil shared.

The parallel details around Bil and Cole’s condition, medication and health plan helped the Schmidtknechts understand how Cole’s pharmacy differed from Bil’s.

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

Bil’s pharmacist made sure he got the life-saving medication he needed.

‘She was like, ‘So we got to figure this out,'” Shanon recalled. “I remember she said, ‘You’re not leaving here with nothing for him, for Bil.'”

While no one can know for sure what happened to Cole at the pharmacy that day, those close to him, including Bil’s pharmacy, are convinced about how it played out.

“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,” Bil said. “She can’t make that judgment for sure, but she felt that way.”

“As you can tell, he was the love of our life,” said Dwayne Page, Cole’s grandfather, at the premiere of a documentary on Jan. 10 in Rio in south-central Wisconsin. “One day, he and I were laying in the yard, looking up at the sky. He looked at me and said, ‘Grandpa, when you get to Heaven, will you save me a seat by you.'”

In March, Wisconsin Senate President Mary Felzkowski, R-Tomahawk, reintroduced legislation that she and the Schmidtknechts believe could have helped Cole get his medication.

“At some point, somebody has to say enough is enough and put some guardrails around this,” Felzkowski said.

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

“PBMs are essentially a middleman hired by insurance companies to manage patient prescription drug benefit programs,” said state Rep. Todd Novak, R-Dodgeville, who has sponsored this legislation in the Wisconsin Assembly.

“They’re actually adversely driving up the cost to drugs and controlling whether or not you get the medication that’s been prescribed to you,” said Felzkowski.

Newly dubbed “Cole’s Act,” this legislation marks the third time the multi-pronged bill has been authored.

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

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.

“Marketplace events occur 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,” said Rachel Ver Velde, the associate vice president of government relations and senior political advisor for Wisconsin Manufacturers & Commerce, during a bill hearing by the Wisconsin Senate Committee on Health.

“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,” said Felzkowski.

Exactly one year after Cole’s passing, his parents filed a negligence lawsuit against the pharmacy benefit manager and the chain the 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.

But in a motion to dismiss, the pharmacy benefits manager argues that because Cole’s health plan is what’s called self-funded, these types of employer-sponsored benefits are not technically health insurance, largely not subject to state law and “exclusively a federal concern.”

“We can’t keep waiting for Washington. My constituents can’t afford to keep waiting for Washington on a number of things. I believe in states’ rights, and it’s time that the states need to step up. We have the fifth highest health care cost in the nation, and our quality does not reflect that,” Felzkowski said.

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 pharmacy benefits manager companies for inflating drug prices, saying United Health 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.

“How does this bill, how would this bill have saved Cole?” asked a reporter at a March 4 press conference at the Wisconsin State Capitol.

“I’m going to defer to Cole’s dad for that.” Felzkowski replied.

“The reality is — any portion of a bill that would prevent the slowdown at the pharmacy counter,” said Bil Schmidtknecht at the press conference.

“There’s so many ‘had he done this’ or ‘had he went to this type of pharmacy’ or, you know, and it’s just the ultimate thing. No matter what happens, it was totally preventable. I mean — it was preventable.”

He made a plea to lawmakers.

“Please don’t let another parent stand where we are today,” Bil said.

“We’ve just taken a totally different look at so many things in life,” said Shanon. “But it’s all because this cannot happen — this cannot happen to another family.”