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.