Bradley, thank you for your time.

>> Thanks.

>> Zach.

>> 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 Marissa 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.

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

>> Brill and Shanon Schmidtknecht had just heard the worst news of their life.

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

>> Their oldest son, Kohl, 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 lifeless.

Yeah.

No pulse.

They had to resuscitate him.

>> 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, that essentially what we saw laying in the hospital of our son was all that he would ever be.

>> The 22 year old laying in that hospital just days earlier was happy and healthy.

Bill and Shannon were mystified.

>> Yes.

When I grab on to him, like I just couldn't, you're like, this cannot be happening.

>> In the days that followed, Bill and Shannon watched their son fulfill an organ donation before watching him take his final breath.

>> Kohl had had asthma his whole life.

He was on a great that stabilized his asthma for the past decade or more.

So we were like, this cannot be.

>> Still in shock.

They didn't understand how this could have happened and why Kohl didn't have his medication.

>> I will never forget that day.

>> Their quest for answers began as grieving parents.

More than a year later, they retell Kohl story, hoping for change.

>> We always felt there was something that was unanswered.

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 something, something happened.

Like he didn't give.

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.

>> Probably a few weeks later, texted her, say, hey, can you swing by the pharmacy and grab my steroid medicine too?

>> 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.

>> 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.

>> They were told specifically as employees that it would be a seamless transition.

Pharmacy benefits would be seamless.

Prescription coverage would be seamless.

>> The unique thing, though, is we stayed with the same pharmacy benefit manager.

>> 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.

>> I will never forget that leaving that pharmacy and being like, oh my God, this is what happened to Cole.

>> 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.

>> The parallel details around Bill and Cole's condition, medication and health plan helped the Schmidtknecht understand how Cole's pharmacy visit differed from Bill's.

>> The difference is he didn't have this pharmacist or any caring independent pharmacist or whomever to stop for five seconds.

>> Bill's pharmacist made sure he got the life saving medication he needed.

>> She was like, so we got to figure this out.

You're not leaving here with nothing for him, for Bill.

>> While no one can know for sure what happened to Cole at the pharmacy that day, many, including bills pharmacist, are convinced.

>> Honestly, she believes this is what contributed to 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.

>> And you could tell he was the love of her 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 eat the heaven, would you save me a seat by you?

>> In March, Senate President Mary Felzkowski reintroduced legislation that she and the Schmidtknecht believe could medication.

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

>> 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.

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.

>> Newly dubbed Cole's Act, this is the third time the multi-pronged legislation has been authored.

>> 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.

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 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.

Generic.

>> 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.

>> I can't believe it's been almost a year that he's gone.

Yeah, 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.

>> 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.

>> 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 Optumrx, CVS Caremark and Cigna 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 will this bill have saved Cole?

>> I'm going to defer to Cole's dad for that.

>> The reality is, any portion of a bill that would prevent the slowdown at the pharmacy counter.

There's so many Harry Dunn 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.

>> 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.

>> Reporting from Poynette.