station of PBS.

[MUSIC] continuing coverage of prescription drugs, where the cost for patients continues to skyrocket as health coverage for critical medication declines in uncovered here and Now, producer Marissa Wojcik examines the complex systems driving these trends and the stories of patients facing life or death choices.

Our next story is about a leukemia patient who had a promising treatment that cost the same as buying a house, and he couldn't access it without paying upfront.

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

>> Kevin Walz has what's called chronic lymphocytic leukemia or Kiel, a type of blood cancer.

He was suddenly in urgent need of treatment.

>> My cancer center.

I can't say enough about him.

>> His oncologist had a prescription that was promising, but it came at a price.

>> $13,000 before we could ship this.

And I said $13,000.

Yes.

That's what this drug costs to be delivered without insurance.

>> 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.

>> Nobody could do that.

I don't care who you are.

>> 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 Kiel with no generic equivalent.

>> 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 supply and what am I going to do next month?

>> His clinic pleaded with his health plan to cover some portion of his life saving 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.

>> We don't cover that because we're a self funded insurance company.

>> A self-funded plan is not insurance.

>> Sarah Davis is the director of the center for Patient Partnerships, a research and advocacy program at UW-Madison.

>> 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.

>> Today, self-funded plans are the most predominant form of health coverage in the US because they help employers save money.

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

>> Mike Roach is the director of business development at the Alliance, a Wisconsin organization that helps employers design self-funded health plans.

>> 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.

>> Making it difficult for employers to afford health coverage.

>> 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 had that, while holding the risk could make the profit.

And so employers realized, hey, we 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 that the money is saved is in paying out less claims.

>> 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.

>> Knowing that your 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 trickle down 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.

>> But it's often difficult for people to even know what kind of plan they have.

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

>> A lot of it comes back to transparency.

What employees 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.

>> So who pays for the big ticket items?

>> You know, there's a couple of drugs coming out.

They're going to be $3 million a piece.

How am I going to cover those?

And how does that trickle down to the humerus.

And the stellaris that folks need on a more regular basis, but are still, you know, thousands of dollars a month?

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

>> Maybe you could check in to 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.

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.

>> The side effects of dealing with it all took a toll.

>> 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.

>> Advocates at his clinic didn't let up.

>> They're very persistent, very persistent.

>> Exhausting every possible avenue to access his medicine.

After months of setbacks, good news arrived from his clinic.

>> She kept calling me and calling me and calling me.

She couldn't tell me the news fast enough that they had come through.

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

>> 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.

>> 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. >> In the end, Kevin hopes some good will come from his experience.

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.

>> Reporting from Palmyra.

>> Reporting from Palmyra.