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station of PBS.
[MUSIC]

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continuing coverage of
prescription drugs, where

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the cost for patients
continues to skyrocket as

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health coverage for critical
medication declines in

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uncovered here and Now,
producer Marissa Wojcik

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examines the complex systems
driving these trends and the

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stories of patients facing
life or death choices. Our

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next story is about a
leukemia patient who had a

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promising treatment that
cost the same as buying a

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house, and he couldn't
access it without paying

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upfront.
>> All of a sudden, my

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numbers were at like
167,000, compared to like 4

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or 5000.
>> Kevin Walz has what's

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called chronic lymphocytic
leukemia or Kiel, a type of

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blood cancer. He was
suddenly in urgent need of

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treatment.
>> My cancer center. I can't

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say enough about him.
>> His oncologist had a

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prescription that was
promising, but it came at a

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price.
>> $13,000 before we could

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ship this. And I said
$13,000. Yes. That's what

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this drug costs to be
delivered without insurance.

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>> He soon discovered his
health plan wouldn't be

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covering a dime of his
medication. Calling it a

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non-preferred specialty drug
and putting him on the hook

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for 100% of the cost.
>> Nobody could do that. I

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don't care who you are.
>> This specialty drug costs

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$13,000 per month. It's a
non chemotherapy treatment.

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And the first FDA approved
medicine for people with a

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high risk form of Kiel with
no generic equivalent.

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>> I got lots of denial
letters and stuff over the

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months saying that there was
nothing they could do. And

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I'm running low on my month
supply and what am I going

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to do next month?
>> His clinic pleaded with

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his health plan to cover
some portion of his life

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saving medication under the
Affordable Care Act health

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insurance plans have cost
sharing requirements and

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limits to what a patient has
to pay out of pocket,

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covering prescription drugs
is considered an essential

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health benefit. However,
Kevin's health plan doesn't

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fall under the ACA because
it's not technically

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insurance. Instead, his
health coverage through his

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employer is what's called a
self-funded plan. These

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plans are also known as
self-insured, which is a bit

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of a misnomer.
>> We don't cover that

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because we're a self funded
insurance company.

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>> A self-funded plan is not
insurance.

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>> Sarah Davis is the
director of the center for

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Patient Partnerships, a
research and advocacy

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program at UW-Madison.
>> Being insurance is what

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triggers state regulation,
and there are rules those

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companies need to follow in
terms of mandatory benefits.

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They need to cover, right.
If there are claims being

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denied the protections that
that consumer has are

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reduced. In self-funded
plans.

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>> Today, self-funded plans
are the most predominant

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form of health coverage in
the US because they help

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employers save money.
>> Self-funding lets the

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employer take control of the
second or third biggest line

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item on their budget.
>> Mike Roach is the

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director of business
development at the Alliance,

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a Wisconsin organization
that helps employers design

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self-funded health plans.
>> If you're if you're not

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trying to manage it and
you're fully insured, you're

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going to get an increase
probably every year. The

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last few years, that's been
a double digit increase. And

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it's getting more and more
difficult for employers to

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find a way to control that
cost.

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>> Making it difficult for
employers to afford health

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coverage.
>> The reason that

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self-funded plans came about
is that employers realized

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they were paying a fixed
amount to the insurance

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company, and then it was the
insurance company had that,

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while holding the risk could
make the profit. And so

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employers realized, hey, we
if we hold all that money

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ourselves and only pay a
certain percentage in

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claims, we're keeping that
profit. The concern I have

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as a health advocate is that
a large motivation for

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having a self-funded plan is
to save money, and the place

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that the that the money is
saved is in paying out less

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claims.
>> A recent study shows the

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top issue for Wisconsin
businesses is to make health

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care more affordable. That
same study says the majority

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of people in Wisconsin are
very worried about their

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cost of health care.
>> Knowing that your

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self-funded and that there's
value to be found if you, as

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the employee, are good
stewards of the plan and

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seek value, that should have
a trickle down effect so

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that the next year you don't
see your part of that

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premium go up. You may not
have to change deductibles

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or co insurances so you can
get some stability in your

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plan.
>> But it's often difficult

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for people to even know what
kind of plan they have.

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>> It takes advocates and
patients sometimes quite a

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bit of time to parse out and
figure out that it is not

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insurance.
>> A lot of it comes back to

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transparency. What employees
employer has now become the

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insurance company. You know,
whether you're fully insured

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or self-funded. That plan,
doc, is the same, I think as

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long as an employee
understands the high level

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pieces of their plan design,
deductibles, co insurances,

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what's on their formulary
list from their PBM, who's

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in network from a doctor or
hospital standpoint that's

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going to cover 95 to 98% of
everything they do during

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the year.
>> So who pays for the big

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ticket items?
>> You know, there's a

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couple of drugs coming out.
They're going to be $3

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million a piece. How am I
going to cover those? And

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how does that trickle down
to the humerus. And the

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stellaris that folks need on
a more regular basis, but

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are still, you know,
thousands of dollars a

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month?
>> Advocates say self-funded

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plans can create a conflict
of interest for employers

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who suddenly have an
employee with expensive

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health needs.
>> Maybe you could check in

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to going part time and see
if Medicare or something

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would help out. And I
thought to myself, really?

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You want me to go part time
now? I'm going to lose

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benefits. I'm going to lose
my insurance, and I'm going

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to be part time. Is this a
way to weed me out?

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Eventually.
situation, right. The

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employer wants to protect
the employee, right? They

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want to get the most for
their money. Once we're in a

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self-funded situation, the
employee is at odds with the

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employer.
>> The side effects of

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dealing with it all took a
toll.

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>> One day I sat on my phone
on hold from one of the drug

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companies for over six
hours. Just stressing me out

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to the point where I was not
paying attention to my

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healing.
>> Advocates at his clinic

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didn't let up.
>> They're very persistent,

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very persistent.
>> Exhausting every possible

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avenue to access his
medicine. After months of

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setbacks, good news arrived
from his clinic.

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

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She couldn't tell me the
news fast enough that they

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had come through. The drug
manufacturer said they were

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going to provide the
remaining dose of his

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treatment at no cost.
>> I don't think anybody

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should have to fight for
their life like that. It's

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hard enough just to sit back
and think about me not being

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here for the people around
me. I worry about not being

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here. Normal, I guess.
>> I worry for people who

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don't have hours and hours
and hours to read fine print

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and you know, make sure that
they're going to get what

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they need. If, you know, if
they get ill.

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

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experience.
several years ago. Even

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after he would go and have
spinal taps and stuff, he

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always said if they can
learn something from my

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treatments for the next
people, I've accomplished

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something in life. I say the
same thing. If they can get

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something out of me for
other people, I've done

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exactly what I wanted to do
in life.

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>> Reporting from Palmyra.
>> Reporting from Palmyra.