All of a sudden my numbers were at
like a hundred and sixty seven
thousand compared to like four
or five thousand.
Kevin Voltz has what's called
chronic lymphocytic leukemia
or CLL, 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.
Thirteen thirteen thousand dollars
before we could ship this.
And I said thirteen
thousand dollars?
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 can do that.
I don't care who you are.
This specialty drug costs thirteen
thousand dollars 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.
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 gonna do next?
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 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.
You know, if you're if you're not
trying to manage it and you're fully
insured, you're gonna 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 this 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 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 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 coinsurances.
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
a 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 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
and hospital standpoint,
that's going to cover ninety-five
to ninety-eight percent of
everything they do during the year.
So who pays for the big ticket
items?
You know, there's a a couple of
drugs coming out, they're gonna be
three million dollars apiece.
How am I gonna cover those?
And how does that trickle down to
the the humeras and the stellaras
that folks need on a 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 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 gonna lose benefits,
I'm gonna lose my insurance,
and I'm gonna be part time.
Is this a way to
weed me out eventually?
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.
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 gonna get what
they need if
You know, if they get ill.
In the end, Kevin hopes
some good will come from his
experience.
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.
Reporting from Palmyra,
I'm Marissa Wochek for here and
now.
I made that for him.