Here & Now

Here & Now for January 2, 2026

Announcer:
The following program is a PBS Wisconsin original production.

Shanon Schmidtknecht:
I just remember walking in and she had it written down on a piece of paper – ‘no longer covered by insurance.’

Marisa Wojcik:
What would you do?

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.

Marisa Wojcik:
If your medicine was suddenly not covered by insurance.

Kevin Voltz:
We need $13,000 before we can ship this. And I said, “$13,000?”

Marisa Wojcik:
If you had to pay hundreds or thousands of dollars up front.

Kevin Voltz:
Yes. That’s what this drug costs to be delivered without insurance.

Marisa Wojcik:
Before getting a lifesaving prescription.

Nilsa Cruz:
The patients really don’t understand what’s going on with their benefits.

Marisa Wojcik:
And it all seems too complicated to understand.

Ann Lewandowski:
You’re really in survival mode, and you’re just trying to figure out, like, do I go to work and make money or do I deal with this disease?

Mary Felzkowski:
We have the fifth highest health care costs in the nation, and our quality does not reflect that.

Larry Crowley:
These patients are confused. They’re overwhelmed, and they’re forced into impossible decisions about their health.

Marisa Wojcik:
Good evening. I’m Marisa Wojcik, series producer of “Here & Now.” Tonight on our program, we’re bringing you a series of stories about prescription medication becoming increasingly unaffordable. In “Rx Uncovered,” we’ll dive into the complex systems driving these trends and the stories of patients facing life or death choices. We look at how and why more health plans are not covering lifesaving medication, the real-life impacts this is having on Wisconsin patients, who’s trying to change it, and what you should know about your plan. It’s “Here & Now” for January 2nd.

Announcer:
Funding for “Here & Now” is provided by the Focus Fund for Journalism and Friends of PBS Wisconsin.

Marisa Wojcik:
Have you ever gone to pick up a routine prescription and the co-pay is suddenly very different but your plan hasn’t changed. This is what’s called a flexible formulary, and they’re actually quite common. Now, the companies that manage prescription plans say that this allows them to save you money, but it can have the opposite effect as well. Our first story is about a young man with chronic asthma, and when he went to the pharmacy, couldn’t afford the sudden spike in the price of 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 Shanon 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 Schmidtknechts 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 of 2025, Senate President Mary Felzkowski reintroduced legislation that she and the Schmidtknechts 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. The Federal Trade Commission released a 2025 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:
As you just heard, Cole’s health plan is what’s called self-funded and as we learn in our next story, self-funded health plans are not technically health insurance. While they both do a lot of the same things, self-funded health plans do not adhere to the same laws as health insurance. Our next story is about a leukemia patient who learned this the hard way, despite the promise of a lifesaving treatment, his self-funded health plan wasn’t going to help.

Kevin Voltz:
All of a sudden, my numbers were at like 167,000, compared to like 4 or 5000.

Marisa Wojcik:
Kevin Voltz has what’s called chronic lymphocytic leukemia or CLL, a type of blood cancer. He was suddenly in urgent need of treatment.

Kevin Voltz:
My cancer center, I can’t say enough about them.

Marisa Wojcik:
His oncologist had a prescription that was promising, but it came at a price.

Kevin Voltz:
We need $13,000 before we could ship this. And I said,” $13,000?” Yes. That’s what this drug costs to be delivered without insurance.

Marisa Wojcik:
He soon discovered his health plan wouldn’t be covering a dime of his medication, calling it a non-preferred specialty drug and putting him on the hook for 100% of the cost.

Kevin Voltz:
Nobody could do that. I don’t care who you are.

Marisa Wojcik:
This specialty drug costs $13,000 per month. It’s a non-chemotherapy treatment and the first FDA approved medicine for people with a high-risk form of CLL with no generic equivalent.

Kevin Voltz:
I got lots of denial letters and stuff over the months saying that there was nothing they could do. And I’m running low on my month’s supply and what am I going to do next month?

Marisa Wojcik:
His clinic pleaded with his health plan to cover some portion of his lifesaving medication. Under the Affordable Care Act, health insurance plans have cost sharing requirements and limits to what a patient has to pay out of pocket. Covering prescription drugs is considered an essential health benefit. However, Kevin’s health plan doesn’t fall under the ACA because it’s not technically insurance. Instead, his health coverage through his employer is what’s called a self-funded plan. These plans are also known as self-insured, which is a bit of a misnomer.

Kevin Voltz:
We don’t cover that because we’re a self-funded insurance company.

Sarah Davis:
A self-funded plan is not insurance.

Marisa Wojcik:
Sarah Davis is the director of the Center for Patient Partnerships, a research and advocacy program at UW-Madison.

Sarah Davis:
Being insurance is what triggers state regulation, and there are rules those companies need to follow, in terms of mandatory benefits they need to cover, right? If there are claims being denied, the protections that that consumer has are reduced in self-funded plans.

Marisa Wojcik:
Today, self-funded plans are the most predominant form of health coverage in the U.S. because they help employers save money.

Mike Roche:
Self-funding lets the employer take control of the second or third biggest line item on their budget.

Marisa Wojcik:
Mike Roche is the director of business development at the Alliance, a Wisconsin organization that helps employers design self-funded health plans.

Mike Roche:
If you’re, if you’re not trying to manage it and you’re fully insured, you’re going to get an increase probably every year. The last few years, that’s been a double-digit increase. And it’s getting more and more difficult for employers to find a way to control that cost.

Marisa Wojcik:
Making it difficult for employers to afford health coverage.

Sarah Davis:
The reason that self-funded plans came about is that employers realized they were paying a fixed amount to the insurance company, and then it was the insurance company that, while holding the risk, could make the profit. And so employers realized, hey, if we hold all that money ourselves and only pay a certain percentage in claims, we’re keeping that profit. The concern I have as a health advocate is that a large motivation for having a self-funded plan is to save money, and the place that the money is saved is in paying out less claims.

Marisa Wojcik:
A recent study shows the top issue for Wisconsin businesses is to make health care more affordable. That same study says the majority of people in Wisconsin are very worried about their cost of health care.

Mike Roche:
Knowing that you’re self-funded and that there’s value to be found. If you, as the employee, are good stewards of the plan and seek value, that should have a trickledown effect so that the next year you don’t see your part of that premium go up. You may not have to change deductibles or co-insurances so you can get some stability in your plan.

Marisa Wojcik:
But it’s often difficult for people to even know what kind of plan they have.

Sarah Davis:
It takes advocates and patients sometimes quite a bit of time to parse out and figure out that it is not insurance.

Mike Roche:
A lot of it comes back to transparency. What employees need to know is that your employer has now become the insurance company. You know, whether you’re fully insured or self-funded, that plan doc is the same. I think as long as an employee understands the high-level pieces of their plan design: deductibles, co-insurances, what’s on their formulary list from their PBM, who’s in network from a doctor or hospital standpoint. That’s going to cover 95 to 98% of everything they do during the year.

Marisa Wojcik:
So who pays for the big-ticket items?

Mike Roche:
You know, there’s a couple of drugs coming out. They’re going to be $3 million apiece. How am I going to cover those? And how does that trickle down to the Humiras and the Stelaras that folks need on a more regular basis, but are still, you know, thousands of dollars a month?

Marisa Wojcik:
Advocates say self-funded plans can create a conflict of interest for employers who suddenly have an employee with expensive health needs.

Kevin Voltz:
Maybe you could check into going part-time and see if Medicare or something would help out. And I thought to myself, really? You want me to go part time. Now I’m going to lose benefits. I’m going to lose my insurance, and I’m going to be part time. Is this a way to weed me out eventually?

Sarah Davis:
In an insurance situation, right, the employer wants to protect the employee, right? They want to get the most for their money. Once we’re in a self-funded situation, the employee is at odds with the employer.

Marisa Wojcik:
The side effects of dealing with it all took a toll.

Kevin Voltz:
One day I sat on my phone on hold from one of the drug companies for over six hours. Just stressing me out to the point where I was not paying attention to my healing.

Marisa Wojcik:
Advocates at his clinic didn’t let up.

Kevin Voltz:
They’re very persistent, very persistent.

Marisa Wojcik:
Exhausting every possible avenue to access his medicine. After months of setbacks, good news arrived from his clinic.

Kevin Voltz:
She kept calling me and calling me and calling me. She couldn’t tell me the news fast enough that they had come through.

Marisa Wojcik:
The drug manufacturer said they were going to provide the remaining dose of his treatment at no cost.

Kevin Voltz:
I don’t think anybody should have to fight for their life like that. It’s hard enough just to sit back and think about me not being here for the people around me. I worry about not being here. Normal, I guess.

Sarah Davis:
I worry for people who don’t have hours and hours and hours to read fine print and you know, make sure that they’re going to get what they need if, you know, if they get ill.

Marisa Wojcik:
In the end, Kevin hopes some good will come from his experience.

Kevin Voltz:
My dad died from CLL several years ago. Even after he would go and have spinal taps and stuff, he always said if they can learn something from my treatments for the next people, I’ve accomplished something in life. I say the same thing. If they can get something out of me for other people, I’ve done exactly what I wanted to do in life.

Marisa Wojcik:
These two stories are examples of some of the direct impacts patients are experiencing. But if we zoom out, the big picture has many moving parts that make up the system of prescription medication, from research and development to manufacturing, wholesalers, prescribers, and pharmacies. One piece can’t be moved without causing ripple effects to all the others. And for one of those pieces, pharmacies, the ripple effects have turned into a crashing wave.

Nicole Schreiner:
We have been in business for over 70 years.

Marisa Wojcik:
The local drugstore was once upon a time a staple in communities across the country.

Nicole Schreiner:
We look at our financials every month and it’s scary, and we think about how, how long can we last?

Marisa Wojcik:
Today, whether it’s the local drugstore or a chain pharmacy, the brick-and-mortar presence is dying.

Nicole Schreiner:
The feasibility of having an independent pharmacy is becoming very challenging.

Marisa Wojcik:
Nicole Schreiner is the new CEO of Streu’s Pharmacy in Green Bay and board president of the Pharmacy Society of Wisconsin.

Nicole Schreiner:
We get up in the morning because we want to truly help serve our patients.

Marisa Wojcik:
Alongside her commitment to the mission, she takes on her new dual roles in one of the most challenging times for pharmacies. As millions of Americans now live in pharmacy deserts. From 2010 to 2021, 30% of drugstores in the U.S. closed. In 2024 alone, some estimates show 2800 pharmacies closed, half of them being small or mid-sized businesses. And in 2025, even the big chains like Walgreens closed hundreds of locations.

Nicole Schreiner:
It’s creating an access issue for patients. We oftentimes talk about in rural areas, you know, patients having to travel, you know, perhaps 20 miles to find a pharmacy that would be able to provide their medications. And — but we’re having that even in urban city areas.

Marisa Wojcik:
For some, a visit to the pharmacy is a quick stop, picking up one or two prescriptions. But for many patients, it’s much more than that.

Mary Felzkowski:
Your pharmacist, a lot of times, will be a critical component of your medical care team.

Marisa Wojcik:
Senate President Mary Felzkowski authored legislation trying to help local pharmacies keep their doors open.

Mary Felzkowski:
We saw our small, independent pharmacies starting to go out of business in rural Wisconsin.

Marisa Wojcik:
When it may take months for a patient to get a clinic visit. Pharmacists say they bridge that gap, available for anyone to walk in and ask questions at any time and prevention leads to healthcare savings.

Nicole Schreiner:
For patients with asthma, we did a study with the Pharmacy Society of Wisconsin and showed that when they sat down with a pharmacist on two 30-minute interventions, that they reduced the number of ER visits, the number of hospitalizations. These things are making a difference in overall reducing health care dollars spent.

Marisa Wojcik:
Like with most retail stores, it’d be reasonable to assume that internet sales are putting pharmacies out of business. And while mail order and online retailer giants like Amazon do compete with onsite service, advocates diagnose a much deeper and chronic issue.

Mary Felzkowski:
PBMs – pharmacy benefit managers – have been around for a very long time.

Marisa Wojcik:
Pharmacy benefit managers or PBMs act as middlemen between drug manufacturers, wholesalers, providers, insurance companies and pharmacies.

Mary Felzkowski:
And they’ve monopolized and they’ve gotten in between prescribers and the delivery of drugs, driving up the cost of drugs instead of lowering them.

Marisa Wojcik:
The three largest PBM companies accounted for 80% of prescription claims last year.

Ben Pearlman:
They’ll claim that they negotiate with drug manufacturers and pharmacies to reduce overall prescription drug costs. However, despite these claims, PBMs regularly inflate what patients pay and force pharmacies to operate at a loss.

Nicole Schreiner:
It’s become very powerful, and independent pharmacies like myself have no negotiating power anymore with these PBMs.

Bob Jaskolski:
The impact of PBMs, that PBMs are having on rural pharmacies, is staggering.

Marisa Wojcik:
The legislation takes aim at a number of their practices, including not allowing patients to fill prescriptions at certain pharmacies.

Bob Jaskolski:
PBMs dictate where prescriptions can be filled…

Marisa Wojcik:
Punitive audits against pharmacists who inform patients of lower cost options.

Bob Jaskolski:
…what to charge a patient…

Marisa Wojcik:
And perhaps the biggest of all for pharmacies…

Bob Jaskolski:
…what they will reimburse a pharmacy…

Marisa Wojcik:
reimbursing the price of medications below cost

Bob Jaskolski:
…and when they’ll pay the pharmacy.

Marisa Wojcik:
forcing them to take losses. At a Senate health committee hearing, numerous local pharmacies attested to this issue.

Nic Smith:
My pharmacy is currently operating in the red right now, solely due to PBM reimbursement rate.

Larry Crowley:
Margins estimated to PBMs have increased by 46%, and during the same time, margins to pharmacies have decreased by 47%.

Nicole Schreiner:
The contracts have become basically take it or leave it. They’ve continued to erode year after year after year, and it’s estimated that independent pharmacies, depending on your particular location in the country, can have anywhere from 20 to 40% of their claims are actually reimbursed below cost.

Marisa Wojcik:
But not all health industry experts agree.

Abbey Rude:
We believe all these provisions will be associated with increased costs to health plans and sponsors.

Marisa Wojcik:
Those in opposition to the bill, such as health insurers, say it will increase prices for health plans, employers and patients. The exorbitant cost of drugs, they say, begins with the drug manufacturers.

Patrick Lobejko:
Instead of taking away the few tools that health plans and employers use to address ever increasing drug prices, the legislature should focus on fixing the market distortion caused by drug manufacturer pricing schemes.

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

Marisa Wojcik:
Whatever the cause, the impact on the patient is real, like the ability to obtain diabetes medications.

Nicole Schreiner:
GLP-1s those — some pharmacies are just choosing not to carry them because they get reimbursed below their cost.

Marisa Wojcik:
Or having your insurance accepted.

Nicole Schreiner:
Some pharmacies are choosing not to carry particular plans because of the poor reimbursement.

Larry Crowley:
Every day in my pharmacy, I witness patients facing exorbitant co-pays, sometimes exceeding $500 for medications they cannot afford. These patients are confused. They’re overwhelmed, and they’re forced into impossible decisions about their health.

Marisa Wojcik:
For a patient having to fill prescriptions at multiple pharmacies, the consequences can cost them their lives.

Josie French:
Recently, when interviewing a patient, we learned that they had a duplicate prescription that was at another pharmacy from a different doctor. If they had gone home and taken both, they would have needed emergency care and it could have been fatal.

Marisa Wojcik:
From the extremes of the pandemic to the work they do every day, independent pharmacists say their commitment is to their community.

Nic Smith:
What happens if PBMs continue to drive us out of business? Who will step up during this crisis? Who’s going to be doing seven day a week testing? Who’s going to deliver meds late at night for a hospice patient? Who’s going to get a call at 2 a.m.? I just got that last week. It won’t be a mail order pharmacy in another state that’s doing that.

Nicole Schreiner:
Being able to provide that service to patients and to be part of making sure that they are taken care of, is really what we want to ultimately do.

Marisa Wojcik:
Advancements in modern medicine have created some amazing treatments to manage or even cure diseases and conditions once thought untreatable, but these advancements come with a huge price tag. In our next story, we look at an increasingly common mechanism used by health plans to help offset the rising costs of these miracle medicines, where financial aid is diverted away from patients who need it most.

Tamra Varebrook:
I couldn’t believe what I found out when this happened. I couldn’t believe it was legal.

Marisa Wojcik:
Tamra Varebrook lives with painful chronic conditions. She can still live her life as long as she has her medication.

Tamra Varebrook:
I changed jobs and started over with a new copay and new deductible. That’s when this hit me. I wasn’t getting my medications. And you know, I thought, what? Why aren’t you sending them? They’re like, “Well, you have a $6,000 balance.” I had my first experience with copay accumulators. I had never even heard of him.

Marisa Wojcik:
A copay accumulator sounds like an obscure insurance term, and it is.

Tamra Varebrook:
And I know people don’t understand this if this doesn’t directly affect them.

Marisa Wojcik:
It’s also a growing trend among health plans. For Tamra’s conditions, her medication costs her the equivalent of buying a car every year.

Tamra Varebrook:
Right now, I take the entire prior year to save up, to try to have enough to buy my drug in January. It’s ridiculously expensive, but it’s the thing that makes me be able to walk and my arms bend and, you know, keep, you know, my joints moving so I don’t end up in a wheelchair.

Marisa Wojcik:
To afford her drugs, her doctors told her about patient assistance programs. It’s often the drug manufacturer helping the patient to afford their own high-priced medication. This kind of financial assistance is referred to as a copay coupon or copay card.

Tamra Varebrook:
That were meant to help the patients get their drugs and pay down their deductibles. Pay down their, you know, on their out-of-pocket maximums.

Marisa Wojcik:
Here’s how they work. A patient is prescribed an expensive name brand drug that doesn’t have a generic. Their health plan has a high deductible and out-of-pocket maximum, which they must meet before the plan will cover the drug. The copay card provides the financial assistance to cover the patient’s deductible and out-of-pocket max. When those are met, the health plan kicks in and covers all or part of the cost that remains of the drug, potentially saving the patient thousands of dollars.

Tamra Varebrook:
It was a life changer. I was, you know, pretty low income at the time when a lot of my medical issues started and I would never have been able to afford these medications.

Marisa Wojcik:
One day, she realized she wasn’t receiving the life-changing assistance or her medication. Tamra was blindsided.

Tamra Varebrook:
They weren’t shipping it. And so I kept calling and saying, “Well, why isn’t this shipping?” They’re like, “You owe $6,000.” And I’m like, “What do you mean I owe $6,000?”

Marisa Wojcik:
The drug company had provided the copay card.

Tamra Varebrook:
I’ve already gotten this and you know, it should be — my deductible at least should be covered.

Marisa Wojcik:
The problem was the financial assistance no longer covered her. The pharmacy told her…

Tamra Varebrook:
If you don’t pay for it in full, you are not getting your medication. And I went months without.

Marisa Wojcik:
Tamra had recently started a new job where her health plan contained a copay accumulator.

Tamra Varebrook:
I spent countless hours on phone calls. I can’t even tell you how upsetting it was.

Marisa Wojcik:
The accumulator is a relatively new tool used by health plans and pharmacy benefit managers. A copay accumulator takes the financial assistance, the copay card, and only applies it to the total cost of the drug. It does not count towards the patient’s deductible or out of pocket maximum. In other words, the patient no longer saves money. The health plan saves money by taking the full amount of the copay card and still collecting the deductible and out-of-pocket maximum paid by the patient.

Jim Turk:
This is a very scary moment for me, just knowing a lot of other people with MS.

Marisa Wojcik:
Jim Turk has multiple sclerosis or MS, a disease that attacks the body’s nerves. There’s no cure, only treatment.

Jim Turk:
If you’re on drugs, I mean, that’s your lifeline. That’s something that’s preventing that or at least slowing that down significantly from happening. So they don’t have as much stress in their life either. And the stress in their life can also exacerbate the symptoms. So it’s just this vicious circle.

Marisa Wojcik:
He’s an advocate for people with MS, knowing the struggles firsthand.

Jim Turk:
I look at a list to see what all the drugs cost. Ocrevus, the one that I was on last, which was actually the newer drug, was one of the cheaper drugs and that was, I think, $70 or $80,000 a year, which I can’t afford. I’m on disability.

Marisa Wojcik:
Having been the recipient of copay cards, he stresses their importance for patients to survive.

Jim Turk:
You have to make the choice between paying for your drugs that might be a lifesaver or paying for groceries. And obviously, there’s no choice there. Or paying for rent. And that’s really what it comes down to.

Marisa Wojcik:
And a copay accumulator…

Jim Turk:
They’re essentially designed to be confusing.

Marisa Wojcik:
…makes that choice even harder.

Tamra Varebrook:
I thought, holy cow. Well, in 21 states, it is now illegal, but not Wisconsin.

Marisa Wojcik:
Other states have outlawed accumulators, and a bill currently in Wisconsin’s Legislature would as well. At a hearing, health plans and pharmacy benefit managers spoke in opposition.

Patrick Lobejko:
This bill does nothing to control the soaring prices of prescription drugs set by pharmaceutical manufacturers, but instead rewards drug makers for steering patients towards more expensive brand name drugs.

Marisa Wojcik:
They say copay cards are a ploy by pharmaceutical companies to get patients to take expensive name brand drugs.

Sharon Faust:
Rather than benefiting those in financial need, a lot of these coupons from manufacturers act as an inducement to move to higher cost products.

Marisa Wojcik:
Supporters of accumulators say they lower costs by saving health plans money, not just one patient, but others refuted these claims.

Bill Robie:
Nearly all copay assistance programs from manufacturers are for drugs with no generic alternatives. The copay assistance increases medication adherence. Studies have found that morbidity and mortality associated with poor medication adherence cost the U.S. healthcare system $528 billion annual. Nonadherence can lead to treatment failure, resulting in poor outcomes such as worsening of condition, admission to the emergency room and hospitalization, and requiring new prescriptions to treat subsequent comorbidities, which results in higher cost to the entire health care system. That is what will increase premiums.

Marisa Wojcik:
This rings true for Tamra.

Tamra Varebrook:
The specific drug is not the only cost of chronic disease. Chronic disease causes people to miss work, end up in emergency rooms, hospital bills.

Marisa Wojcik:
Drug manufacturers do not like accumulators because the assistance doesn’t go to help the patient. She fears they may end up not providing the assistance at all.

Tamra Varebrook:
I’m afraid that the pharmaceutical companies stop the programs because they’re not helping the patients, and that would be a real nightmare because then everybody would suffer. This is where we’re at in Wisconsin now, and I feel bad for everybody who has a child or, you know, any adult that runs into these issues because most people are not prepared with that kind of money, and you aren’t going to get your medication.

Marisa Wojcik:
There has been some movement in the state’s legislature to address things like copay accumulators, open formularies and pharmacy access. We’re joined by someone on the front lines of this work. Rob Gundermann, president and CEO of the Coalition of Wisconsin Aging and Health Groups. And thanks for being here.

Rob Gundermann:
Thanks for having me.

Marisa Wojcik:
So tell me a little bit about how you got started in all of this.

Rob Gundermann:
Sure. Well, I started getting calls from patients who were trying to get their medications. They’d go to the pharmacy counter, and they were being told that it would be thousands of dollars to get the medication that they’re used to paying 30, 40, $50, whatever their copay was. And they were learning that a copay accumulator had been applied to their policy. The one that really struck me was a woman with a heart condition who needed this heart medication to live, and she went up, like she always does, to buy her medication. They said it was going to be $3,800. They didn’t have $3,800. And her husband had to go to the bank and take out a loan so she could get the medication she needs to live. And I realized, we have a problem here. And that woman who I’ve come to know, she — her family is going into debt more and more every year having to deal with this. So that’s how I got involved in this.

Marisa Wojcik:
And as you’ve been working on these issues, is this just all too common?

Rob Gundermann:
You know, when I started out in this, it wasn’t that common. It was — I was seeing in a plan here and people were starting to come to me. Now it’s become very common. It’s spreading like wildfire. There are very few plans left. I don’t even know of a plan left in Wisconsin that doesn’t have a copay accumulator other than the group, the state insurance plan.

Marisa Wojcik:
And there’s accumulators, maximizers and those sound like good things.

Rob Gundermann:
They do. They use catchy terminology, and they’ve probably run this through marketing groups to see what, what people like and what people don’t like. But you’re exactly right. There are copay accumulators. They’re copay maximizers. They’re all doing essentially the same thing, but just from a little bit different angle. You know, when you look at this copay accumulator piece, it just to me, this is just so unfair and I don’t — it’s been difficult for me to understand how this has been allowed. If you and I went out to dinner and I paid for your dinner and the restaurant said, We’ve adopted a copay policy where you have to pay for your meal and you say, “Well, Rob already paid for my meal.” Yes. And we appreciate that and we’re going to keep his money. But you also have to pay for your meal. You say, This isn’t fair. You’re getting paid twice for the meal. This is what the insurance companies are doing and they think it’s fine.

Marisa Wojcik:
What is the impact you’ve seen on patients? What does this do to someone who’s making this impossible decision?

Rob Gundermann:
Well, a couple of things. One, the financial stress that it’s putting families under that just can’t afford this. But the other piece is I’ve had people tell me they’re not going to take their medication anymore. I had a friend of mine who has MS and he says if they put one of these copay accumulators on my policy, I’m going to stop taking my medication. So you then end up with more problems with their health. And I don’t think that’s a cost saving measure by, you know, taking this money, they may get some money out of it. But I think in the long run, the increased health expenses that you’re going to have for people if they stop taking their medications are going to offset that.

Marisa Wojcik:
And as you’ve said and as we’ve seen in these stories, people don’t know until they’re so far along that they owe all this extra money. There’s no ability to have a payment plan for your medications. So you either get it or you don’t. How difficult is it for people to even know that something like this is on their plan? How much of it is just poor communication?

Rob Gundermann:
That’s a lot of it. It’s very difficult. I’ve looked at some of these plans, 50, 60 pages, and who’s going to read 50 or 60 pages of fine print? Some of this is very small, it’s hard to read, especially if your eyes aren’t so good as mine aren’t anymore. It’s hard to spot this little clause in there that says, and even if you read it, if you don’t know already what a copay accumulator is, you’re not going to understand what they’re saying in there.

Marisa Wojcik:
Now, Senate President Mary Felzkowski has been working on legislation like this for many years, many sessions. What are the concerns that state lawmakers have had making it so difficult to move this forward?

Rob Gundermann:
So I think the one thing that’s really held us up with state law — well, a couple of arguments that the insurers have made. One is that this will drive patients to more expensive brand name medications. We know 98% of the medications in this group, these expensive medications, there isn’t a generic for. But Senator Felzkowski put in language in the bill saying that this only applies to medications for which there is not a generic equivalent. So that’s off the table. They’re still making that argument, though. The other argument that we’re hearing is that it will drive up insurance premiums. But there’s studies that have been done looking at states that have already passed this type of legislation where the premiums haven’t increased. And conversely, studies have looked at states that haven’t passed this legislation and premiums aren’t lower there. Like in Wisconsin, our premiums aren’t lower where we don’t have that.

Marisa Wojcik:
Where does it currently stand? And what, if anything, has changed throughout this session as it’s gone through committee?

Rob Gundermann:
Sure. Well, we had a committee hearing, which was the first. This is the second session that we’ve tried to run this bill, and we weren’t able to get a vote out of committee last session. This session, we’ve got a 5 to 0 vote. So the entire committee voted in favor of passing this out in the Senate. And we expect that to come up to the onto the floor at some point in January. We just don’t know when. And so, you know, there’s a definite shift here where the momentum has shifted. I think there are 40 co-sponsors on the bill. But I think, I think the votes are there to pass the bill if we can get the votes.

Marisa Wojcik:
We saw in Cole Schmidtknecht’s story that he didn’t know that the formulary had changed and that’s something that’s been a point of contention in the legislation. Has that changed as it’s gone through committee?

Rob Gundermann:
Yeah. So the insurers wanted to be able to change the formulary throughout the year. And right now they could only change it during the window when people can change plans. And I said we didn’t have a problem with that. As long as they weren’t able to force the patient to change their medication mid-year. So I think it’s actually a benefit to patients, because if you’re going to make a formulary change, tell them in June or July, give them as much time as possible to figure out what they’re going to do and find a new plan that will cover whatever the medication is that they’re taking that is going to be leaving your formulary. So I think I don’t see a downside to that.

Marisa Wojcik:
Overall, premiums are going up. If people feel like they’re not properly covered under a plan that they’re paying a lot of money for every month, do you think patients will just end up foregoing a health plan altogether?

Rob Gundermann:
That’s our — that’s our concern, our worry. I think there are people who they’re going to look at this and say, “I’m paying so much out of pocket anyway. I’m not ever using the insurance, so what’s the point of having it?” And then when they have something serious happen, then it’s more problems. And it’s not like someone isn’t paying for that.

Marisa Wojcik:
Now we just saw Congress go through the longest government shutdown in history over these enhanced tax credits, and we’re still seeing premiums go up all around. How much of this is kind of reaching a turning point as healthcare premiums, costs are all going up and there doesn’t seem to be an end in sight?

Rob Gundermann:
We’re getting to the point where something has to happen and we can’t — my insurance went up almost 25% this year. We can’t have 25% annual increases in our health costs. Just as Americans, we can’t afford it. So we have to figure something out. And I don’t know what that answer is. I mean, people, smarter people than me, have been trying to figure this out for a very long time. But we’re getting to the point where we have to. This isn’t an option anymore. We can’t afford to keep going the way that we’re going. And for a lot of families without the Affordable Care Act plans being available to them, I think we have a lot of people who are just not going to be insured.

Marisa Wojcik:
Thank you very much for joining us.

Rob Gundermann:
Thanks.

Marisa Wojcik:
As we’ve seen, most patients don’t get the option of a payment plan for these costly prescriptions. You either pay up front or you don’t receive treatment. In all of these stories, complex diagnoses, convoluted health plans, decreasing access, and steep prices are overwhelming patients with impossible decisions. But they’re not always alone. Patient advocates are stepping in, using their knowledge of the system and doing what they can to make sure patients are getting the treatment they need.

Nilsa Cruz:
How far are they away from bankruptcy?

Janelle Zeihen:
They pretty much billed me $83,000 per infusion.

Nilsa Cruz:
They are as far away as a chronic diagnosis.

Marisa Wojcik:
The right medication can be expensive, but critical for chronic illness patients. Advocates like Nilsa Cruz know this all too well.

Nilsa Cruz:
The reason why I became a patient advocate is it was actually baptism by fire.

Marisa Wojcik:
When she started as administrator for the Milwaukee Rheumatology Center more than 20 years ago, she also became the clinic’s de facto patient advocate.

Nilsa Cruz:
Patients coming back or calling back because their medication is not covered. Perhaps they cannot afford the out-of-pocket expense after going through a very tedious process of a prior authorization only to come and find out that it’s unaffordable. Delays and denials, some patients suffering too because the patients really don’t understand what’s going on with their benefits.

Marisa Wojcik:
Today, she’s known and even sought out for her ability to help patients navigate complex health benefits.

Janelle Zeihen:
I come to this clinic because of their patient advocate.

Marisa Wojcik:
Janelle Zeihen came to Cruz when her last clinic didn’t know how to help her navigate her health plan benefits. So she came to this rheumatology clinic for her Crohn’s, a type of inflammatory bowel disease.

Janelle Zeihen:
It starts with, like, a — like somebody is sucker punching me right up into my chest. And then — and that’s pretty much the inflammation starting.

Marisa Wojcik:
Crohn’s disease can be debilitating and life threatening, especially when not treated.

Janelle Zeihen:
It is extremely painful. I can barely walk when it happens. Being on the Entyvio that I get, it’s been life changing.

Marisa Wojcik:
When she got a new job, her Entyvio was no longer covered under her new plan.

Janelle Zeihen:
They specifically carved out all tier four drugs, which are chemo’s, HIV drugs and any infusions.

Marisa Wojcik:
Tier four drugs are also referred to as specialty drugs.

Ann Lewandowski:
When you have a complex condition, what you get slapped with is this penalty called specialty drug because a pharmacist might have to monitor or look at something more closely, which they should be doing for every drug anyway.

Marisa Wojcik:
Ann Lewandowski also knows how difficult but essential it is finding the right medication.

Ann Lewandowski:
Accessing it because of insurance barriers and other issues can also be as much or more challenging.

Marisa Wojcik:
She has her own experience with autoimmune disorders and healthcare.

Ann Lewandowski:
You’re really in survival mode and you’re just trying to figure out, like, do I go to work and make money or do I deal with this disease?

Marisa Wojcik:
Part of her expertise…

Ann Lewandowski:
I am also a patient.

Marisa Wojcik:
…comes from being a patient, and she uses that knowledge to help others better understand these complex systems.

Ann Lewandowski:
We have these market distortions, right? We have, depending on what your diagnosis is, who your insurance company is, two patients walking in with even the same diagnosis are going to be charged completely different prices. And I think that’s really problematic.

Nilsa Cruz:
I’ve seen plan documents where they’re limiting, you know, drug expenditure, like anything over 100,000 is out. I’ve seen plan documents where cancer drugs are not covered, where none of, none of the rheumatology drugs are covered.

Marisa Wojcik:
Often patients that can’t afford an expensive drug qualify for patient assistance programs through the pharmaceutical company. But these programs are usually for people with little to no health coverage.

Janelle Zeihen:
I am insured at $400 premium cost.

Marisa Wojcik:
Janelle was covered by her employer’s self-funded health plan, even though it’s specifically carved out her medication, leaving her to cover the cost.

Nilsa Cruz:
Big time pharma is starting to say no, it’s not happening. Companies are saying these funds are for patients who are literally uninsured. Pharma will deny that free drug for the patient because benefits have been carved out and made non-essential by the plan. And you’re literally functionally uninsured.

Marisa Wojcik:
Having coverage, at least on paper, disqualified her for patient financial assistance. Why some drugs are covered by some health plans and not others is an opaque and complex system.

Nilsa Cruz:
The pricing structure in this country when it comes to pricing these drugs and reimbursement, and what actual costs are, is so messed up. It’s so messed up.

Marisa Wojcik:
These carve outs to not cover expensive drugs are becoming more common among self-funded health plans like Janelle’s, which are governed by different laws than fully insured health plans.

Nathan Houdek:
We know health insurance can be complicated and confusing.

Marisa Wojcik:
Secretary Nathan Houdek oversees the Office of the Commissioner of Insurance.

Nathan Houdek:
And what makes it even more confusing for people is that health insurance is really regulated by a number of different agencies at both the federal and state levels.

Marisa Wojcik:
This state agency regulates fully insured health plans. If a patient wants to challenge an insurance denial, they come here.

Nathan Houdek:
And what a lot of people don’t understand if they have employer sponsored coverage is whether that’s fully insured coverage or whether that is self-funded coverage.

Marisa Wojcik:
Self-funded coverage is regulated by federal law, but you can still start with this office.

Nathan Houdek:
If someone has health insurance coverage through a self-funded plan, then we will kind of hand them off to — we like to refer to as kind of a warm handoff to the Department of Labor, because it’s the federal Department of Labor that actually regulates self-funded plans.

Marisa Wojcik:
Because of this, no matter what kind of plan, Secretary Houdek recommends reaching out.

Nathan Houdek:
Unfortunately, studies have shown that of all the coverage and claim denials, only a small percentage are appealed. And that’s really because people don’t know what their rights are. People don’t know that there is a place where they can turn to answer questions, to be a resource, and our office is here to help with that.

Marisa Wojcik:
Fully insured versus self-funded plans. Health experts say they both have their own issues. The rules are just different.

Ann Lewandowski:
I have a lot of empathy for employers, right? I mean, if you are a manufacturer here in Wisconsin. You’re making cheese. You’re making steel parts, whatever, making yachts. It really doesn’t matter. You are not a health care expert.

Marisa Wojcik:
For Janelle, her case was even more complicated than most. But Cruz was with her every step of the way.

Janelle Zeihen:
First of the year …

Nilsa Cruz:
I remember that conversation, Janelle. You literally told me, “I’m just settle on not getting my treatment this year.”

Marisa Wojcik:
She helped Janelle file a complaint with the U.S. Department of Labor.

Nilsa Cruz:
Please keep in mind that for any given patient to file a complaint with the Department of Labor takes guts because you’re now dealing with filing a complaint against your employer. And the fear of getting fired, even though it’s totally illegal.

Janelle Zeihen:
It does make it hard to go into work, because I also don’t know if I’m going to be walking into work and being walked out because of this and for retaliation or whatnot.

Ann Lewandowski:
There are still these very gray questions of law that honestly make me a little scared to be a patient and speak up and encourage people to exercise their legal rights, which are to speak to their employer and say, “Hey, this is a wrong denial.”

Marisa Wojcik:
During open enrollment, Janelle decided not to use her employer’s health plan, opting to find a fully insured one on the marketplace.

Janelle Zeihen:
If I were to go through my employer, I would be right back to where I started and that would be just — that’s not even an option.

Marisa Wojcik:
She pays more in premiums, but her medication is covered. Without the help of advocates, many patients are left deciding between their medication or their savings.

Nilsa Cruz:
Can patients do this themselves? Probably not, because the statistics have shown that very few patients will take it to the next level. It’s too cumbersome. If you look at denial letters, the steps are in there and it’s even cumbersome for me. However, having said that, I’m constantly looking for ways to make it easier for my patients to appeal.

Marisa Wojcik:
For her patients, Cruz goes all in to help them find relief.

Woman:
Thanks for everything.

Marisa Wojcik:
Relief from the physical pain of a chronic illness and relief from the financial pain of treating it.
For more on this and other issues facing Wisconsin, visit our website at PBSWisconsin.org and click on the news tab. That’s our program for tonight. I’m Marisa Wojcik. Have a good weekend.

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