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>> The following program is
a PBS Wisconsin original

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production.
>> I just remember walking

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in and she had it written
down on a piece of paper,

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no longer covered by
insurance.

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>> What would you do?
>> We always assume that he

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kind of ran some life
choices and said rent or

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this, and thought he could
do without it.

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>> If your medicine was
suddenly not covered by

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insurance.
>> We need $13,000 before

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we can ship this.
[MUSIC]

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And I said $13,000.
>> If you had to pay

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hundreds or thousands of
dollars up front.

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>> Yes.
to be delivered without

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insurance.
>> Before getting a life

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saving prescription.
>> Because the patients

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really don't understand
what's going on with their

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benefits.
>> And it all seems too

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complicated to understand.
[MUSIC]

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survival mode, and you're
just trying to figure out,

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like, do I go to work and
make money? Or do I deal

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with this disease?
>> We have the fifth

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highest health care costs
in the nation, and our

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quality does not reflect
that.

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>> These patients are
confused, they're

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overwhelmed, and they're
forced into impossible

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decisions about their
health.

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>> Good evening. I'm
Marissa Wojcik, series

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producer of Here and Now.
Tonight on our program,

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we're bringing you a series
of stories about

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prescription medication
becoming increasingly

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unaffordable in Rx
Uncovered. We'll dive into

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the complex systems driving
these trends and the

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stories of patients facing
life or death choices. We

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look at how and why more
health plans are not

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covering life saving
medication. The real life

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impacts this is having on
Wisconsin patients, who's

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trying to change it, and
what you should know about

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your plan. It's "Here& Now"
for January 2nd.

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>> Funding for "Here& Now"
is provided by the Focus

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Fund for Journalism and
Friends of PBS Wisconsin.

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>> Have you ever gone to
pick up a routine

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prescription? And the
co-pay is suddenly very

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different. But your plan
hasn't changed. This is

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what's called a flexible
formulary, and they're

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actually quite common. Now,
the companies that manage

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prescription plans say that
this allows them to save

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you money, but it can have
the opposite effect as well.

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Our first story is about a
young man with chronic

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asthma, and when he went to
the pharmacy, couldn't

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afford the sudden spike in
the price of his medicine.

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>> Well, we got told, you
know, just simply that he

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would never wake up.
>> Bill and Shannon

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Schmidtknecht had just
heard the worst news of

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their life.
>> That all I remember is

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collapsing on him and the
nurses sliding chairs

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behind us.
>> Their oldest son, Cole,

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suffered an asthma attack.
His roommate rushed him to

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the ER, and his heart
stopped beating two minutes

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before they arrived.
>> When he arrived at the

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hospital, he was lifeless.
He had no pulse. They had

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to resuscitate him.
>> But the prognosis wasn't

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good.
>> They were no longer

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seeing the brain activity.
They were no longer seeing

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any hope that there would
be any type of recovery.

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That essentially what we
saw laying in the hospital

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of our son was all that he
would ever be.

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>> The 22 year old laying
in that hospital just days

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earlier was happy and
healthy. Bill and Shannon

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were mystified.
>> Yes. When I grab on to

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him like I just couldn't,
you're like, this cannot be

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happening.
>> In the days that

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followed, Bill and Shannon
watched their son fulfill

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an organ donation before
watching him take his final

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breath.
>> Cole had had asthma his

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whole life. He was on a
great medication that

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stabilized his asthma for
the past decade or more. So

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we were like, this cannot
be.

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>> Still in shock. They
didn't understand how this

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could have happened and why
Cole didn't have his

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medication.
day.

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>> Their quest for answers
began as grieving parents.

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More than a year later,
they retell Cole's story,

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hoping for change.
>> We always felt there was

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something that was
unanswered.

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>> The little they did know
was from Cole's best friend

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and roommate, who said Cole
did go to the pharmacy days

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earlier but couldn't get
his asthma medication

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refilled.
don't know. We tried to get

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it a few days ago and he
couldn't afford it. It was

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like $500 and we were like,
no, no, no, no. There has

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to be like.
>> Something.

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>> Something happened. Like
he didn't give.

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>> Both Cole and his father
managed the same chronic

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asthma their whole lives.
They used the same

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prescription inhaler and
they worked for the same

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company, meaning they had
the same health coverage.

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>> Probably a few weeks
later, texted her, hey, can

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you swing by the pharmacy
and grab my steroid

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medicine too?
>> I just remember walking

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in and she had it written
down on a piece of paper,

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no longer covered by
insurance. She worked her

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magic and made a phone call.
Even stayed after they were

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open and, you know, did
what she had to do to get

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something for me to take
home so that he had

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something.
>> This was the first

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glimpse into what may have
happened in the days

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leading up to Cole's death.
Health coverage from the

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employer had changed, and
with it, the out of pocket

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cost.
>> They were told

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specifically as employees
that it would be a seamless

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transition. Pharmacy
benefits would be seamless.

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Prescription coverage would
be seamless.

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>> The unique thing, though,
is we stayed with the same

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pharmacy benefit manager.
>> What did change without

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their knowledge was their
prescription benefits

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formulary. The list of
preferred drugs covered by

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the health plan. These
lists are compiled of name,

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brand, and generic
medications categorized

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into tears. Tier one is the
most preferred by the plan

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and has the lowest co-pays.
The higher the tier, the

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more the patient pays out
of pocket.

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>> I will never forget that
leaving that pharmacy and

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being like, oh my God, the
this is what happened to

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Cole.
>> The preventative asthma

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medication that Cole relied
upon was moved to a higher

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tier that he suddenly could
not afford.

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>> We always assume that he
kind of ran some life

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choices and said rent or
this, and thought he could

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do without it. Five days
after that, he texted me

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that he was having a hard
time breathing.

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>> The parallel details
around Bill and Cole's

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condition, medication and
health plan helped the

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Schmidtknecht understand
how Cole's pharmacy visit

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differed from Bill's.
>> The difference is he

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didn't have this pharmacist
or any caring independent

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pharmacist or whomever to
stop for five seconds.

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>> Bill's pharmacist made
sure he got the lifesaving

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medication he needed.
>> She was like, so we got

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to figure this out. You're
not leaving here with

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nothing for for him, for
Bill.

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for sure what happened to
Cole at the pharmacy that

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day, many, including Bill's
pharmacist, are convinced.

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>> Honestly, she believes
this is what contributed to

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Cole's death was the fact
that he didn't get his

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medicine walking out of the
pharmacy. You know, she she

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can't make that judgment
for sure, but she felt that

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way.
>> And you could tell he

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was the love of our life.
One day with him and I were

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laying in the yard looking
up at the sky. He looked at

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grandpa. When you eat the
habit, will you save me a

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seat? Right here.
>> In March of 2025, Senate

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President Mary Felzkowski
reintroduced legislation

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that she and the
Schmidtknecht believe could

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have helped Cole get his
medication.

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>> At some point, somebody
has to say enough is enough

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and put some guardrails
around this.

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>> The bill contains a
number of measures aimed at

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protecting independent
pharmacies and adding

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regulations against
pharmacy benefit managers,

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or PBMs.
>> PBMs are essentially a

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middleman hired by
insurance companies to

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manage patient prescription
drug benefit programs.

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>> And they're actually
adversely driving up the

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cost of drugs and
controlling whether or not

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you get the medication
that's been prescribed to

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you.
>> Newly dubbed Cole's Act,

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this is the third time the
multi-pronged legislation

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has been authored.
>> I watched what happened

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with the first PBM bill. It
got really stripped down in

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the Assembly. We're not
going to allow that to

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happen this time around. We
are going to pass

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meaningful legislation.
>> One part of the bill

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deals specifically with
drug formularies, saying a

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plan cannot change a drugs
tier except at the time of

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coverage renewal.
Historically, employer and

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insurance groups have
opposed this legislation,

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fearing it will increase
costs.

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>> Marketplace events occur
throughout throughout the

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year that impact the price
of prescription drugs. By

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implementing a frozen
formulary, payers and plans

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will be limited in their
ability to take advantage

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of new reduced prices.
Generic.

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hard on showing them
through data from other

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states that have allowed
that have the same

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legislation, where it's
actually lowered the cost

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of health care.
>> I can't believe it's

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been almost a year that
he's gone. Yeah, exactly.

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>> One year after Cole's
passing, his parents filed

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a negligence lawsuit
against the pharmacy

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benefit manager and the
chain pharmacy where Cole

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went to try and pick up his
inhaler. The complaint says

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no notification went out
that the formulary had

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changed, and the pharmacist
should have offered a

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generic alternative. It
lists a number of points of

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failure, many of which
violate Wisconsin law. In a

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motion to dismiss, the PBM
argues that because Cole's

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health plan is what's
called self-funded, these

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types of employer sponsored
benefits are not

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technically health
insurance. They're largely

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not subject to state law
and exclusively a federal

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concern.
>> We can't keep waiting

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for Washington. My
constituents can't afford

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to keep waiting for
Washington on a number of

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things. And I believe in
states rights. And it's

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time that the states need
to step up. You know, we

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have the fifth highest
health care costs in the

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nation, and our quality
does not reflect that.

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>> Congressional committees
and federal agencies have

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been sounding some alarm on
practices rampant across

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the industry. The Federal
Trade Commission released a

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2025 report investigating
the top three PBM companies

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for inflating drug prices,
seeing UnitedHealth group's

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Optumrx, CVS Caremark and
Cigna's Express Scripts

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increased prices hundreds
or thousands of times over,

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putting $7.3 billion back
into their pockets from

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2017 to 2022. Amid a
complex system, Cole's

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parents believe more should
have been done.

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>> How will this bill have
saved Cole?

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>> I'm going to defer to
Cole's dad for that.

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>> The reality is, any
portion of a bill that

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would prevent the slowdown
at the pharmacy counter,

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there's so many. Had he
done this or had he went to

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this type of pharmacy? The
ultimate thing, no matter

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totally preventable. I mean,
like, it was preventable.

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Please don't let another
parent stand where we are

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today.
>> We've just taken a

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totally different look at
so many things in life.

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It's all because this can
not happen. This cannot

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happen to another family.
>> As you just heard,

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Cole's health plan is
what's called self-funded.

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And as we learn in our next
story, self-funded health

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plans are not technically
health insurance. While

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they both do a lot of the
same things, self-funded

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health plans do not adhere
to the same laws as health

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insurance. Our next story
is about a leukemia patient

236
00:12:34,188 --> 00:12:37,791
who learned this the hard
way. Despite the promise of

237
00:12:37,858 --> 00:12:41,528
a life saving treatment,
his self-funded health plan

238
00:12:41,595 --> 00:12:44,965
wasn't going to help.
>> All of a sudden, my

239
00:12:45,032 --> 00:12:49,603
numbers were at like
167,000, compared to like 4

240
00:12:49,670 --> 00:12:52,005
or 5000.
>> Kevin Walz has what's

241
00:12:52,072 --> 00:12:56,343
called chronic lymphocytic
leukemia, or CLL, a type of

242
00:12:56,410 --> 00:13:00,013
blood cancer. He was
suddenly in urgent need of

243
00:13:00,080 --> 00:13:02,950
treatment.
>> My cancer center. I

244
00:13:03,016 --> 00:13:06,153
can't say enough about him.
>> His oncologist had a

245
00:13:06,220 --> 00:13:08,622
prescription that was
promising, but it came at a

246
00:13:08,689 --> 00:13:11,592
price.
>> We need $13,000 before

247
00:13:11,658 --> 00:13:16,129
we can ship this. And I
said $13,000. Yes. That's

248
00:13:18,532 --> 00:13:23,003
what this drug costs to be
delivered without insurance.

249
00:13:23,070 --> 00:13:25,739
>> He soon discovered his
health plan wouldn't be

250
00:13:25,806 --> 00:13:29,243
covering a dime of his
medication, calling it a

251
00:13:29,309 --> 00:13:32,513
nonpreferred specialty drug
and putting him on the hook

252
00:13:32,579 --> 00:13:36,283
for 100% of the cost.
>> Nobody can do that. I

253
00:13:36,350 --> 00:13:39,586
don't care who you are.
>> This specialty drug

254
00:13:39,653 --> 00:13:44,258
costs $13,000 per month.
It's a non-chemotherapy

255
00:13:44,324 --> 00:13:47,127
treatment and the first FDA
approved medicine for

256
00:13:47,194 --> 00:13:51,498
people with a high risk
form of CLL with no generic

257
00:13:51,565 --> 00:13:53,967
equivalent.
>> I got lots of denial

258
00:13:54,034 --> 00:13:57,404
letters and stuff over the
months saying that there

259
00:13:57,471 --> 00:14:00,174
was nothing they could do.
And I'm running low on my

260
00:14:00,240 --> 00:14:04,511
month's supply. And what am
I going to do next month?

261
00:14:04,578 --> 00:14:07,247
>> His clinic pleaded with
his health plan to cover

262
00:14:07,314 --> 00:14:11,618
some portion of his life
saving medication under the

263
00:14:11,685 --> 00:14:14,755
Affordable Care Act. Health
insurance plans have cost

264
00:14:14,821 --> 00:14:17,891
sharing requirements and
limits to what a patient

265
00:14:17,958 --> 00:14:21,261
has to pay out of pocket.
Covering prescription drugs

266
00:14:21,328 --> 00:14:24,631
is considered an essential
health benefit. However,

267
00:14:24,698 --> 00:14:27,668
Kevin's health plan doesn't
fall under the ACA because

268
00:14:27,734 --> 00:14:31,772
it's not technically
insurance. Instead, his

269
00:14:31,839 --> 00:14:35,642
health coverage through his
employer is what's called a

270
00:14:35,709 --> 00:14:39,179
self-funded plan. These
plans are also known as

271
00:14:39,246 --> 00:14:41,515
self-insured, which is a
bit of a misnomer.

272
00:14:41,582 --> 00:14:46,019
>> We don't cover that
because we're a self funded

273
00:14:46,086 --> 00:14:49,389
insurance company.
>> Self-funded plan is not

274
00:14:49,456 --> 00:14:51,625
insurance.
>> Sarah Davis is the

275
00:14:51,692 --> 00:14:54,228
director of the center for
Patient Partnerships, a

276
00:14:54,294 --> 00:14:58,098
research and advocacy
program at UW-Madison.

277
00:14:58,165 --> 00:15:02,202
>> Being insurance is what
triggers state regulation,

278
00:15:02,269 --> 00:15:05,339
and there are rules those
companies need to follow in

279
00:15:05,405 --> 00:15:09,710
terms of mandatory benefits
they need to cover, right.

280
00:15:09,776 --> 00:15:13,714
If there are claims being
denied the protections that

281
00:15:13,780 --> 00:15:17,150
that consumer has are
reduced in self-funded

282
00:15:17,217 --> 00:15:19,620
plans.
>> Today, self-funded plans

283
00:15:19,686 --> 00:15:22,556
are the most predominant
form of health coverage in

284
00:15:22,623 --> 00:15:26,960
the US because they help
employers save money.

285
00:15:27,661 --> 00:15:29,930
>> Self-funding lets the
employer take control of

286
00:15:29,997 --> 00:15:32,399
the second or third biggest
line item on their budget.

287
00:15:32,466 --> 00:15:34,868
>> Mike Roach is the
director of business

288
00:15:34,935 --> 00:15:38,505
development at the Alliance,
a Wisconsin organization

289
00:15:38,572 --> 00:15:41,608
that helps employers design
self-funded health plans.

290
00:15:41,675 --> 00:15:43,744
>> If you're if you're not
trying to manage it and

291
00:15:43,810 --> 00:15:46,680
you're fully insured,
you're going to get an

292
00:15:46,747 --> 00:15:49,383
increase probably every
year. The last few years,

293
00:15:49,449 --> 00:15:52,519
that's been a double digit
increase. And it's getting

294
00:15:52,586 --> 00:15:57,925
more and more difficult for
employers to find a way to

295
00:15:57,991 --> 00:16:01,128
control that cost.
>> Making it difficult for

296
00:16:01,195 --> 00:16:03,463
employers to afford health
coverage.

297
00:16:03,530 --> 00:16:06,500
>> The reason that
self-funded plans came

298
00:16:06,567 --> 00:16:10,704
about is that employers
realized they were paying a

299
00:16:10,771 --> 00:16:13,140
fixed amount to the
insurance company, and then

300
00:16:13,207 --> 00:16:15,776
it was the insurance
company had that, while

301
00:16:15,843 --> 00:16:19,079
holding the risk could make
the profit. And so

302
00:16:19,146 --> 00:16:23,283
employers realized, hey, we
if we hold all that money

303
00:16:23,350 --> 00:16:26,220
ourselves and only pay a
certain percentage in

304
00:16:26,286 --> 00:16:29,857
claims, we're keeping that
profit. The concern I have

305
00:16:29,923 --> 00:16:34,494
as a health advocate is
that a large motivation for

306
00:16:34,561 --> 00:16:39,233
having a self-funded plan
is to save money, and the

307
00:16:39,967 --> 00:16:43,003
place that the that the
money is saved is in paying

308
00:16:43,070 --> 00:16:46,406
out less claims.
>> A recent study shows the

309
00:16:46,473 --> 00:16:49,977
top issue for Wisconsin
businesses is to make

310
00:16:50,043 --> 00:16:54,014
health care more affordable.
That same study says the

311
00:16:54,081 --> 00:16:56,617
majority of people in
Wisconsin are very worried

312
00:16:56,683 --> 00:16:59,887
about their cost of health
care.

313
00:16:59,953 --> 00:17:02,956
>> Knowing that your
self-funded and that

314
00:17:03,023 --> 00:17:06,527
there's value to be found
if you, as the employee,

315
00:17:06,593 --> 00:17:10,597
are good stewards of the
plan and seek value, that

316
00:17:10,664 --> 00:17:13,000
should have a trickle down
effect so that the next

317
00:17:13,066 --> 00:17:17,771
year you don't see your
part of that premium go up.

318
00:17:17,838 --> 00:17:20,207
You may not have to change
deductibles or coinsurance

319
00:17:20,274 --> 00:17:22,809
so you can get some
stability in your plan.

320
00:17:22,876 --> 00:17:25,679
>> But it's often difficult
for people to even know

321
00:17:25,746 --> 00:17:30,651
what kind of plan they have.
>> It takes advocates and

322
00:17:30,717 --> 00:17:35,289
patients, sometimes quite a
bit of time to parse out

323
00:17:35,355 --> 00:17:38,625
and figure out that it is
not insurance.

324
00:17:38,692 --> 00:17:41,028
>> A lot of it comes back
to transparency. What

325
00:17:41,094 --> 00:17:44,364
employees need to know is
that your employer has now

326
00:17:44,431 --> 00:17:46,266
become the insurance
company. You know, whether

327
00:17:46,333 --> 00:17:48,735
you're fully insured or
self-funded. That plan, doc,

328
00:17:48,802 --> 00:17:51,205
is the same. I think as
long as an employee

329
00:17:51,271 --> 00:17:54,508
understands the high level
pieces of their plan design,

330
00:17:54,575 --> 00:17:57,277
deductibles, coinsurance,
what's on their formulary

331
00:17:57,344 --> 00:18:00,547
list from their PBM, who's
in network from a doctor

332
00:18:00,614 --> 00:18:05,986
and hospital standpoint,
that's going to cover 95 to

333
00:18:06,053 --> 00:18:08,322
98% of everything they do
during the year.

334
00:18:08,388 --> 00:18:11,391
>> So who pays for the big
ticket items?

335
00:18:11,458 --> 00:18:13,527
>> You know, there's a
couple of drugs coming out.

336
00:18:13,594 --> 00:18:16,463
They're going to be $3
million apiece. How am I

337
00:18:16,530 --> 00:18:18,565
going to cover those? And
how does that trickle down

338
00:18:18,632 --> 00:18:22,135
to the humerus and the
stellaris that folks need

339
00:18:22,202 --> 00:18:26,106
on a more regular basis,
but are still, you know,

340
00:18:26,173 --> 00:18:28,075
thousands of dollars a
month?

341
00:18:28,141 --> 00:18:30,344
>> Advocates say
self-funded plans can

342
00:18:30,410 --> 00:18:33,780
create a conflict of
interest for employers who

343
00:18:33,847 --> 00:18:36,884
suddenly have an employee
with expensive health needs.

344
00:18:36,950 --> 00:18:40,454
>> Maybe you could check
into going part time and

345
00:18:40,521 --> 00:18:43,557
see if Medicare or
something would help out.

346
00:18:43,624 --> 00:18:47,528
And I thought to myself,
really? You want me to go

347
00:18:47,594 --> 00:18:51,532
part time now? I'm going to
lose benefits. I'm going to

348
00:18:51,598 --> 00:18:55,869
lose my insurance, and I'm
going to be part time. Is

349
00:18:55,936 --> 00:18:59,273
this a way to weed me out
eventually.

350
00:19:00,574 --> 00:19:04,378
>> In an insurance
situation? Right. The

351
00:19:05,145 --> 00:19:07,614
employer wants to protect
the employee, right? They

352
00:19:07,681 --> 00:19:10,417
want to get the most for
their money. Once we're in

353
00:19:10,484 --> 00:19:13,587
a self-funded situation,
the employee is at odds

354
00:19:13,654 --> 00:19:16,323
with the employer.
>> The side effects of

355
00:19:16,390 --> 00:19:18,225
dealing with it all took a
toll.

356
00:19:18,292 --> 00:19:22,296
>> One day I sat on my
phone on hold from one of

357
00:19:23,931 --> 00:19:29,403
the drug companies for over
six hours, just stressing

358
00:19:29,469 --> 00:19:33,640
me out to the point where I
was not paying attention to

359
00:19:33,707 --> 00:19:36,944
my healing.
>> Advocates at his clinic

360
00:19:37,010 --> 00:19:39,680
didn't let up.
>> They're very persistent,

361
00:19:39,746 --> 00:19:42,416
very persistent.
>> Exhausting every

362
00:19:42,482 --> 00:19:45,953
possible avenue to access
his medicine. After months

363
00:19:46,019 --> 00:19:49,389
of setbacks, good news
arrived from his clinic.

364
00:19:49,456 --> 00:19:52,092
>> She kept calling me and
calling me and calling me.

365
00:19:52,159 --> 00:19:54,361
She couldn't tell me the
news fast enough that they

366
00:19:54,428 --> 00:19:57,197
had come through.
>> The drug manufacturer

367
00:19:57,264 --> 00:19:59,466
said they were going to
provide the remaining dose

368
00:19:59,533 --> 00:20:02,769
of his treatment at no cost.
>> I don't think anybody

369
00:20:02,836 --> 00:20:07,007
should have to fight for
their life like that. It's

370
00:20:07,074 --> 00:20:11,645
hard enough just to sit
back and think about me not

371
00:20:12,813 --> 00:20:17,384
being here for the people
around me. I worry about

372
00:20:21,421 --> 00:20:24,424
not being here. Normal. I
guess.

373
00:20:28,595 --> 00:20:32,833
>> I worry for people who
don't have hours and hours

374
00:20:32,900 --> 00:20:37,237
and hours to read fine
print and, you know, make

375
00:20:38,772 --> 00:20:41,875
sure that they're going to
get what they need. If, you

376
00:20:41,942 --> 00:20:45,179
know, if they get ill.
>> In the end, Kevin hopes

377
00:20:45,245 --> 00:20:47,981
some good will come from
his experience.

378
00:20:48,048 --> 00:20:52,286
>> My dad died from CLL
several years ago. Even

379
00:20:52,819 --> 00:20:55,455
after he would go and have
spinal taps and stuff, he

380
00:20:55,522 --> 00:20:59,092
always said if they can
learn something from my

381
00:20:59,159 --> 00:21:02,763
treatments for the next
people, I've accomplished

382
00:21:02,829 --> 00:21:06,366
something in life. I say
the same thing. If they can

383
00:21:06,433 --> 00:21:11,138
get something out of me for
other people. I've done

384
00:21:11,205 --> 00:21:14,541
exactly what I wanted to do
in life.

385
00:21:14,608 --> 00:21:17,311
>> These two stories are
examples of some of the

386
00:21:17,377 --> 00:21:20,747
direct impacts patients are
experiencing. But if we

387
00:21:20,814 --> 00:21:23,817
zoom out, the big picture
has many moving parts that

388
00:21:23,884 --> 00:21:26,920
make up the system of
prescription medication.

389
00:21:26,987 --> 00:21:30,123
From research and
development to

390
00:21:30,657 --> 00:21:33,627
manufacturing, wholesalers,
prescribers, and pharmacies.

391
00:21:33,694 --> 00:21:36,630
One piece can't be moved
without causing ripple

392
00:21:36,697 --> 00:21:40,434
effects to all the others.
And for one of those pieces,

393
00:21:40,501 --> 00:21:44,238
pharmacies, the ripple
effects have turned into a

394
00:21:44,304 --> 00:21:47,841
crashing wave.
>> We have been in business

395
00:21:47,908 --> 00:21:50,978
for over 70 years.
>> The local drugstore was,

396
00:21:51,044 --> 00:21:54,314
once upon a time, a staple
in communities across the

397
00:21:54,381 --> 00:21:56,250
country.
>> We look at.

398
00:21:56,316 --> 00:22:00,053
>> Our financials every
month, and it's scary. And

399
00:22:00,120 --> 00:22:03,891
we think about how how long
can we last?

400
00:22:03,957 --> 00:22:07,060
>> Today, whether it's the
local drugstore or a chain

401
00:22:07,127 --> 00:22:09,897
pharmacy, the brick and
mortar presence is dying.

402
00:22:09,963 --> 00:22:12,165
>> The feasibility.
>> Of having an independent

403
00:22:12,232 --> 00:22:14,968
pharmacy is becoming very
challenging.

404
00:22:15,035 --> 00:22:18,172
>> Nicole Schreiner is the
CEO of Streu's Pharmacy in

405
00:22:18,238 --> 00:22:21,875
Green Bay and board
president of the Pharmacy

406
00:22:21,942 --> 00:22:25,078
Society of Wisconsin.
>> We get up in the morning

407
00:22:25,145 --> 00:22:29,550
because we want to truly
help serve our patients.

408
00:22:29,616 --> 00:22:31,919
>> Alongside her commitment
to the mission, she takes

409
00:22:31,985 --> 00:22:35,189
on her new dual roles in
one of the most challenging

410
00:22:35,255 --> 00:22:38,458
times for pharmacies. As
millions of Americans now

411
00:22:38,525 --> 00:22:43,197
live in pharmacy deserts.
From 2010 to 2021, 30% of

412
00:22:44,097 --> 00:22:48,769
drugstores in the US closed
in 2024 alone. Some

413
00:22:48,836 --> 00:22:52,406
estimates show 2800
pharmacies closed, half of

414
00:22:52,472 --> 00:22:55,609
them being small or
mid-sized businesses. And

415
00:22:55,676 --> 00:22:59,213
in 2025, even the big
chains like Walgreens

416
00:22:59,279 --> 00:23:02,449
closed hundreds of
locations.

417
00:23:02,516 --> 00:23:06,053
>> It's creating an access
issue for patients we

418
00:23:06,119 --> 00:23:09,756
oftentimes talk about in
rural areas, you know,

419
00:23:09,823 --> 00:23:12,459
patients having to travel,
you know, perhaps 20 miles

420
00:23:12,526 --> 00:23:14,962
to find a pharmacy that
would be able to provide

421
00:23:15,028 --> 00:23:19,266
their medications. And but
we're having that even in

422
00:23:19,333 --> 00:23:22,903
urban city areas.
>> For some, a visit to the

423
00:23:22,970 --> 00:23:25,839
pharmacy is a quick step,
picking up 1 or 2

424
00:23:25,906 --> 00:23:28,475
prescriptions. But for many
patients, it's much more

425
00:23:28,542 --> 00:23:31,612
than that.
>> Your pharmacist a lot of

426
00:23:31,678 --> 00:23:35,749
times will be a critical
component of your medical

427
00:23:35,816 --> 00:23:38,752
care team.
>> Senate President Mary

428
00:23:38,819 --> 00:23:40,988
Felzkowski authored
legislation trying to help

429
00:23:41,054 --> 00:23:44,024
local pharmacies keep their
doors open.

430
00:23:44,091 --> 00:23:46,760
>> We saw our small,
independent pharmacy

431
00:23:46,827 --> 00:23:50,764
starting to go out of
business in rural Wisconsin.

432
00:23:50,831 --> 00:23:53,534
>> When it may take months
for a patient to get a

433
00:23:53,600 --> 00:23:57,237
clinic visit. Pharmacists
say they bridge that gap.

434
00:23:57,304 --> 00:23:59,840
Available for anyone to
walk in and ask questions

435
00:23:59,907 --> 00:24:03,544
at any time. And prevention
leads to health care

436
00:24:03,610 --> 00:24:05,779
savings.
>> For patients with asthma.

437
00:24:05,846 --> 00:24:08,448
We did a study with the
Pharmacy Society of

438
00:24:08,515 --> 00:24:10,651
Wisconsin and showed that
when they sat down with a

439
00:24:10,717 --> 00:24:14,087
pharmacist on two 30 minute
interventions, that they

440
00:24:14,154 --> 00:24:17,991
reduced the number of ER
visits, the number of

441
00:24:18,058 --> 00:24:20,694
hospitalizations. These
difference in overall

442
00:24:20,761 --> 00:24:22,729
reducing health care
dollars spent.

443
00:24:22,796 --> 00:24:25,432
>> Like with most retail
stores, it'd be reasonable

444
00:24:25,499 --> 00:24:28,135
to assume that internet
sales are putting

445
00:24:28,202 --> 00:24:31,471
pharmacies out of business.
And while mail order and

446
00:24:31,538 --> 00:24:34,741
online retailer giants like
Amazon do compete with on

447
00:24:34,808 --> 00:24:38,712
site service advocates,
diagnose a much deeper and

448
00:24:38,779 --> 00:24:42,549
chronic issue.
>> PBMs pharmacy benefit

449
00:24:42,616 --> 00:24:45,385
managers have been around
for a very long time.

450
00:24:45,452 --> 00:24:49,356
>> Pharmacy benefit
managers, or PBMs, act as

451
00:24:49,423 --> 00:24:53,627
middlemen between drug
manufacturers, wholesalers,

452
00:24:53,694 --> 00:24:57,798
providers, insurance
companies and pharmacies.

453
00:24:57,865 --> 00:25:00,634
>> And they've monopolized
and they've gotten in

454
00:25:00,701 --> 00:25:03,737
between prescribers and the
delivery of drugs, driving

455
00:25:03,804 --> 00:25:06,773
up the cost of drugs
instead of lowering them.

456
00:25:06,840 --> 00:25:10,410
>> The three largest PBM
companies accounted for 80%

457
00:25:10,477 --> 00:25:13,380
of prescription claims last
year.

458
00:25:13,447 --> 00:25:15,582
>> They'll claim to
negotiate with drug

459
00:25:15,649 --> 00:25:17,918
manufacturers and
pharmacies, reduce overall

460
00:25:17,985 --> 00:25:19,820
prescription drug costs.
However, despite these

461
00:25:19,887 --> 00:25:22,756
claims, PBMs regularly
inflate what patients pay

462
00:25:22,823 --> 00:25:24,992
and force pharmacies to
operate a loss.

463
00:25:25,058 --> 00:25:28,996
>> It's become very
powerful, and independent

464
00:25:29,062 --> 00:25:33,033
pharmacies like myself have
no negotiating power

465
00:25:33,100 --> 00:25:37,671
anymore with these PBMs.
>> The impact of PBMs that

466
00:25:37,738 --> 00:25:41,175
PBMs are having on rural
pharmacies is staggering.

467
00:25:41,241 --> 00:25:44,811
>> The legislation takes
aim at a number of their

468
00:25:44,878 --> 00:25:48,182
practices, including not
allowing patients to fill

469
00:25:48,248 --> 00:25:50,951
prescriptions at certain
pharmacies.

470
00:25:51,018 --> 00:25:54,555
>> PBMs dictate where
prescriptions can be filled.

471
00:25:54,621 --> 00:25:56,690
>> Punitive audits against
pharmacists who inform

472
00:25:56,757 --> 00:25:59,359
patients of lower cost
options.

473
00:25:59,426 --> 00:26:02,095
>> What to charge a patient.
>> And perhaps the biggest

474
00:26:02,162 --> 00:26:04,865
of all for pharmacies.
>> What they will reimburse

475
00:26:04,932 --> 00:26:08,268
a pharmacy.
>> Reimbursing the price of

476
00:26:08,335 --> 00:26:11,538
medications below cost.
>> And when they'll pay the

477
00:26:11,605 --> 00:26:13,640
pharmacy.
>> Forcing them to take

478
00:26:13,707 --> 00:26:16,677
losses. At a Senate health
committee hearing, numerous

479
00:26:16,743 --> 00:26:19,213
local pharmacies attested
to this issue.

480
00:26:19,279 --> 00:26:21,582
>> That my pharmacy is
currently operating in the

481
00:26:21,648 --> 00:26:26,687
red right now solely due to
PBM reimbursement rate.

482
00:26:26,753 --> 00:26:30,557
>> Margins estimated to
PBMs have increased by 46%,

483
00:26:30,624 --> 00:26:33,660
and during the same time,
margins to pharmacies have

484
00:26:33,727 --> 00:26:37,164
decreased by 47%.
>> The contracts have

485
00:26:37,231 --> 00:26:40,567
become basically take it or
leave it. They've continued

486
00:26:40,634 --> 00:26:44,972
to erode year after year
after year. And it's

487
00:26:45,038 --> 00:26:47,541
estimated that independent
pharmacies, depending on

488
00:26:47,608 --> 00:26:50,143
your particular location in
the country, can have

489
00:26:50,210 --> 00:26:53,247
anywhere from 20 to 40% of
their claims are actually

490
00:26:53,313 --> 00:26:55,482
reimbursed below cost.
>> But not all health

491
00:26:55,549 --> 00:26:58,719
industry experts agree.
>> We believe all these

492
00:26:58,785 --> 00:27:00,187
provisions will be
associated with increased

493
00:27:00,254 --> 00:27:02,556
costs to health plans and
sponsors.

494
00:27:02,623 --> 00:27:05,792
>> Those in opposition to
the bill, such as health

495
00:27:05,859 --> 00:27:07,928
insurers, say it will
increase prices for health

496
00:27:07,995 --> 00:27:11,431
plans, employers and
patients. The exorbitant

497
00:27:11,498 --> 00:27:15,836
cost of drugs, they say,
begins with the drug

498
00:27:15,903 --> 00:27:17,504
manufacturers.
>> Instead of taking away

499
00:27:17,571 --> 00:27:20,140
the few tools that health
plans and employers use to

500
00:27:20,207 --> 00:27:22,342
address ever increasing
drug prices, the

501
00:27:22,409 --> 00:27:24,511
legislature should focus on
fixing the market

502
00:27:24,578 --> 00:27:26,880
distortion caused by drug
manufacturer pricing

503
00:27:26,947 --> 00:27:29,016
schemes.
>> We're going to work very

504
00:27:29,082 --> 00:27:30,951
hard on showing them
through data from other

505
00:27:31,018 --> 00:27:34,354
states that have allowed
that have the same

506
00:27:34,421 --> 00:27:36,390
legislation, where it's
actually lowered the cost

507
00:27:36,456 --> 00:27:38,992
of health care.
>> Whatever the cause, the

508
00:27:39,059 --> 00:27:42,563
impact on the patient is
real, like the ability to

509
00:27:42,629 --> 00:27:46,834
obtain diabetes medications.
>> GLP ones, those some

510
00:27:46,900 --> 00:27:49,102
pharmacies are just
choosing not to carry them

511
00:27:49,169 --> 00:27:51,004
because they get reimbursed
below their cost.

512
00:27:51,071 --> 00:27:53,740
>> Or having your insurance
accepted.

513
00:27:53,807 --> 00:27:55,943
>> Some pharmacies are
choosing not to carry

514
00:27:56,009 --> 00:27:59,279
particular plans because of
the poor reimbursement.

515
00:27:59,346 --> 00:28:02,649
>> Every day my pharmacy, I
witness patients facing

516
00:28:02,716 --> 00:28:07,120
exorbitant co-pays,
sometimes exceeding $500

517
00:28:07,187 --> 00:28:10,457
for medications they cannot
afford. These patients are

518
00:28:10,524 --> 00:28:12,693
confused, they're
overwhelmed, and they're

519
00:28:12,759 --> 00:28:15,462
forced into impossible
decisions about their

520
00:28:15,529 --> 00:28:17,464
health.
>> For a patient having to

521
00:28:17,531 --> 00:28:20,834
fill prescriptions at
multiple pharmacies, the

522
00:28:20,901 --> 00:28:23,871
consequences can cost them
their lives.

523
00:28:23,937 --> 00:28:25,839
>> Recently, when
interviewing a patient, we

524
00:28:25,906 --> 00:28:28,442
learned that they had a
duplicate prescription that

525
00:28:28,509 --> 00:28:30,844
was at another pharmacy
from a different doctor. If

526
00:28:30,911 --> 00:28:33,347
they had gone home and
taken both, they would have

527
00:28:33,413 --> 00:28:35,949
needed emergency care and
it could have been fatal.

528
00:28:36,016 --> 00:28:39,152
>> From the extremes of the
pandemic to the work they

529
00:28:39,219 --> 00:28:42,456
do every day, independent
pharmacists say their

530
00:28:42,523 --> 00:28:44,791
commitment is to their
community.

531
00:28:44,858 --> 00:28:48,195
>> What happens if PBMs
continue to drive us out of

532
00:28:48,262 --> 00:28:50,831
business? Who will step up
during this crisis? Who's

533
00:28:50,898 --> 00:28:53,600
going to be doing seven day
a week testing? Who's going

534
00:28:53,667 --> 00:28:56,170
to deliver meds late at
night for a hospice patient

535
00:28:56,236 --> 00:28:58,772
who's going to get a call
at 2 a.m. I just got that

536
00:28:58,839 --> 00:29:01,775
last week. It won't be a
mail order pharmacy in

537
00:29:01,842 --> 00:29:04,044
another state that's doing
that.

538
00:29:04,111 --> 00:29:06,847
>> Being able to provide
that service to patients,

539
00:29:06,914 --> 00:29:09,683
and to be part of making
sure that they are taken

540
00:29:09,750 --> 00:29:14,221
care of, is really what we
want to ultimately do.

541
00:29:16,290 --> 00:29:18,959
>> Advancements in modern
medicine have created some

542
00:29:19,026 --> 00:29:22,196
amazing treatments to
manage or even cure

543
00:29:22,262 --> 00:29:25,999
diseases and conditions
once thought untreatable,

544
00:29:26,066 --> 00:29:29,870
but these advancements come
with a huge price tag. In

545
00:29:29,937 --> 00:29:33,473
our next story, we look at
an increasingly common

546
00:29:33,540 --> 00:29:36,910
mechanism used by health
plans to help offset the

547
00:29:36,977 --> 00:29:40,714
rising costs of these
miracle medicines, where

548
00:29:40,781 --> 00:29:43,717
financial aid is diverted
away from patients who need

549
00:29:43,784 --> 00:29:47,020
it most.
>> I couldn't believe what

550
00:29:47,855 --> 00:29:49,923
I found out when this
happened. I couldn't

551
00:29:49,990 --> 00:29:53,126
believe it was legal.
>> Tamra Varebrook lives

552
00:29:53,193 --> 00:29:55,762
with painful, chronic
conditions. She can still

553
00:29:55,829 --> 00:29:59,366
live her life as long as
she has her medication.

554
00:29:59,433 --> 00:30:03,437
>> I changed jobs and
started over with a new

555
00:30:04,538 --> 00:30:07,541
co-pay and new deductible.
That's when when this hit

556
00:30:07,608 --> 00:30:10,544
me, I wasn't getting my
medications. And, you know,

557
00:30:10,611 --> 00:30:12,746
I thought, what? Why aren't
you sending them? They're

558
00:30:12,813 --> 00:30:16,416
like, well, you have a
$6,000 balance. I had my

559
00:30:16,483 --> 00:30:18,819
first experience with copay
accumulators. I had never

560
00:30:18,886 --> 00:30:22,022
even heard of him.
>> A copay accumulator

561
00:30:22,089 --> 00:30:25,626
sounds like an obscure
insurance term. And it is.

562
00:30:25,692 --> 00:30:27,461
>> And I know people don't
understand this. If this

563
00:30:27,528 --> 00:30:29,897
doesn't directly affect
them.

564
00:30:29,963 --> 00:30:33,133
>> It's also a growing
trend among health plans

565
00:30:33,200 --> 00:30:36,136
for Tamara's conditions.
Her medication costs her

566
00:30:36,203 --> 00:30:40,040
the equivalent of buying a
car every year.

567
00:30:40,107 --> 00:30:44,578
>> Right now, I take the
entire prior year to save

568
00:30:45,212 --> 00:30:49,883
up, to try to have enough
to buy my drug in January.

569
00:30:49,950 --> 00:30:52,619
It's ridiculously expensive,
but it's the thing that

570
00:30:52,686 --> 00:30:55,956
makes me be able to walk in
my arms, bend and, you know,

571
00:30:56,023 --> 00:30:59,693
keep, you know, my joints
moving so I don't end up in

572
00:30:59,760 --> 00:31:02,696
a wheelchair.
>> To afford her drugs. Her

573
00:31:02,763 --> 00:31:05,866
doctors told her about
patient assistance programs.

574
00:31:05,933 --> 00:31:09,269
It's often the drug
manufacturer helping the

575
00:31:09,336 --> 00:31:12,372
patient to afford their own
high priced medication.

576
00:31:12,439 --> 00:31:15,108
This kind of financial
assistance is referred to

577
00:31:15,175 --> 00:31:18,178
as a copay, coupon, or
copay card.

578
00:31:18,245 --> 00:31:20,747
>> That were meant to help
the patients get their

579
00:31:20,814 --> 00:31:25,085
drugs and pay down their
deductibles, pay down their,

580
00:31:25,152 --> 00:31:28,255
you know, on their
out-of-pocket maximums.

581
00:31:28,322 --> 00:31:31,525
>> Here's how they work A
patient is prescribed an

582
00:31:31,592 --> 00:31:35,696
expensive name brand drug
that doesn't have a generic.

583
00:31:35,762 --> 00:31:38,665
Their health plan has a
high deductible and

584
00:31:38,732 --> 00:31:41,602
out-of-pocket maximum,
which they must meet before

585
00:31:41,668 --> 00:31:45,138
the plan will cover the
drug. The copay card

586
00:31:45,205 --> 00:31:48,108
provides the financial
assistance to cover the

587
00:31:48,175 --> 00:31:51,311
patient's deductible and
out-of-pocket max. When

588
00:31:51,378 --> 00:31:54,515
those are met, the health
plan kicks in and covers

589
00:31:54,581 --> 00:31:58,452
all or part of the cost
that remains of the drug,

590
00:31:58,519 --> 00:32:00,821
potentially saving the
patient thousands of

591
00:32:00,888 --> 00:32:03,590
dollars.
>> It was a life changer. I

592
00:32:03,657 --> 00:32:07,494
was, you know, pretty low
income at the time when

593
00:32:07,561 --> 00:32:11,098
when a lot of my medical
issues started and I would

594
00:32:11,164 --> 00:32:14,268
never have been able to
afford these medications.

595
00:32:14,334 --> 00:32:16,970
>> One day, she realized
she wasn't receiving the

596
00:32:17,037 --> 00:32:21,642
life changing assistance or
her medication. Tamara was

597
00:32:21,708 --> 00:32:23,777
blindsided.
>> They weren't shipping it.

598
00:32:23,844 --> 00:32:26,280
And so I kept calling and
saying, well, why isn't

599
00:32:26,346 --> 00:32:28,448
this shipping? They're like,
you owe $6,000. And I'm

600
00:32:28,515 --> 00:32:31,752
like, what do you mean I
owe $6,000?

601
00:32:32,186 --> 00:32:35,422
>> The drug company had
provided the copay card.

602
00:32:35,489 --> 00:32:39,393
>> I've already gotten this.
And you know, it should be.

603
00:32:39,459 --> 00:32:43,063
My deductible at least
should be covered.

604
00:32:43,130 --> 00:32:45,933
>> The problem was the
financial assistance no

605
00:32:45,999 --> 00:32:50,237
longer covered her. The
pharmacy told her.

606
00:32:50,304 --> 00:32:52,806
>> If you don't pay for it
in full, you are not

607
00:32:52,873 --> 00:32:55,442
getting your medication.
And I went months without.

608
00:32:55,509 --> 00:32:58,111
>> Tamara had recently
started a new job where her

609
00:32:58,178 --> 00:33:01,915
health plan contained a
copay accumulator.

610
00:33:01,982 --> 00:33:06,353
>> I spent countless hours
on phone calls. I can't

611
00:33:06,420 --> 00:33:09,089
even tell you how upsetting
it was.

612
00:33:09,156 --> 00:33:12,292
>> The accumulator is a
relatively new tool used by

613
00:33:12,359 --> 00:33:17,064
health plans and pharmacy
benefit managers. A copay

614
00:33:17,130 --> 00:33:19,032
accumulator takes the
financial assistance, the

615
00:33:19,099 --> 00:33:22,736
copay card, and only
applies it to the total

616
00:33:22,803 --> 00:33:26,373
cost of the drug. It does
not count towards the

617
00:33:26,440 --> 00:33:30,043
patient's deductible or
out-of-pocket maximum. In

618
00:33:30,110 --> 00:33:34,681
other words, the patient no
longer saves money. The

619
00:33:34,748 --> 00:33:37,818
health plan saves money by
taking the full amount of

620
00:33:37,885 --> 00:33:40,754
copay card and still
collecting the deductible

621
00:33:40,821 --> 00:33:44,758
and out-of-pocket maximum
paid by the patient.

622
00:33:44,825 --> 00:33:47,561
>> This is a very scary
moment for me, just knowing

623
00:33:47,628 --> 00:33:50,163
a lot of other people with
Miss.

624
00:33:50,230 --> 00:33:53,767
>> Jim Turk has multiple
sclerosis, or Ms. a disease

625
00:33:53,834 --> 00:33:56,770
that attacks the body's
nerves. There's no cure,

626
00:33:56,837 --> 00:34:00,207
only treatment.
>> If you're on drugs. I

627
00:34:00,274 --> 00:34:02,276
mean, that's your lifeline.
That's something that's

628
00:34:02,342 --> 00:34:04,411
preventing that, or at
least slowing that down

629
00:34:04,478 --> 00:34:05,946
significantly from
happening. So they don't

630
00:34:06,013 --> 00:34:08,448
have as much stress in
their life either. And the

631
00:34:08,515 --> 00:34:11,618
stress in their life can
also exacerbate the

632
00:34:11,685 --> 00:34:14,621
symptoms. So it's just this
vicious circle.

633
00:34:14,688 --> 00:34:17,858
>> He's an advocate for
people with Ms. Knowing the

634
00:34:17,925 --> 00:34:21,028
struggles firsthand.
>> I look at a list to see

635
00:34:21,094 --> 00:34:23,964
what all the drugs cost.
Ocrevus the one that I was

636
00:34:24,031 --> 00:34:27,100
on last, which was actually
the newer drug, was one of

637
00:34:27,167 --> 00:34:30,971
the cheaper drugs. And that
was, I think, 70 or $80,000

638
00:34:31,038 --> 00:34:34,975
a year, which I can't
afford. I'm on disability.

639
00:34:35,042 --> 00:34:37,911
>> Having been the
recipient of copay cards,

640
00:34:37,978 --> 00:34:40,581
he stresses their
importance for patients to

641
00:34:40,647 --> 00:34:42,349
survive.
>> You have to make the

642
00:34:42,416 --> 00:34:46,320
choice between paying for
your drugs that might be a

643
00:34:46,386 --> 00:34:49,623
lifesaver or paying for
groceries, and obviously

644
00:34:49,690 --> 00:34:52,492
there's no choice there or
paying for rent. And that's

645
00:34:52,559 --> 00:34:54,595
really what it comes down
to.

646
00:34:54,661 --> 00:34:58,198
>> And a copay accumulator.
>> They're essentially

647
00:34:58,265 --> 00:35:01,435
designed to be confusing.
>> Makes that choice even

648
00:35:01,502 --> 00:35:04,404
harder.
Well, in 21 states it is

649
00:35:05,506 --> 00:35:08,242
now illegal, but not
Wisconsin.

650
00:35:08,308 --> 00:35:11,144
>> Other states have
outlawed accumulators, and

651
00:35:11,211 --> 00:35:13,780
a bill currently in
Wisconsin's legislature

652
00:35:13,847 --> 00:35:17,451
would as well. At a hearing,
health plans and pharmacy

653
00:35:17,518 --> 00:35:20,120
benefit managers spoke in
opposition.

654
00:35:20,187 --> 00:35:22,222
>> This bill does nothing
to control the soaring

655
00:35:22,289 --> 00:35:25,893
prices of prescription
drugs set by pharmaceutical

656
00:35:25,959 --> 00:35:28,028
manufacturers, but instead
rewards drug makers for

657
00:35:28,095 --> 00:35:30,264
steering patients towards
more expensive brand name

658
00:35:30,330 --> 00:35:32,666
drugs.
>> They say copay cards are

659
00:35:32,733 --> 00:35:35,536
a ploy by pharmaceutical
companies to get patients

660
00:35:35,602 --> 00:35:38,839
to take expensive name
brand drugs.

661
00:35:38,906 --> 00:35:40,707
>> Rather than benefiting
those in financial need. A

662
00:35:40,774 --> 00:35:44,578
lot of these coupons from
manufacturers act as an

663
00:35:44,645 --> 00:35:47,714
inducement to move to
higher cost products.

664
00:35:47,781 --> 00:35:50,717
>> Supporters of
accumulators say they lower

665
00:35:50,784 --> 00:35:55,055
costs by saving health
plans money not just one

666
00:35:55,122 --> 00:35:58,158
patient. But others refuted
these claims.

667
00:35:58,225 --> 00:36:01,228
>> Nearly all copay
assistance programs from

668
00:36:01,295 --> 00:36:04,198
manufacturers are for drugs
with no generic

669
00:36:04,264 --> 00:36:07,201
alternatives. Co-pay
assistance increases

670
00:36:07,267 --> 00:36:09,670
medication adherence.
Studies have found that

671
00:36:09,736 --> 00:36:12,673
morbidity and mortality
associated with poor

672
00:36:12,739 --> 00:36:17,644
medication adherence cost
the US healthcare system

673
00:36:17,711 --> 00:36:21,181
$528 billion. Annual
non-adherence can lead to

674
00:36:21,248 --> 00:36:24,184
treatment failure,
resulting in poor outcomes

675
00:36:24,251 --> 00:36:26,920
such as worsening of
condition, admission to the

676
00:36:26,987 --> 00:36:29,189
emergency room and
hospitalization, and

677
00:36:29,256 --> 00:36:32,459
requiring new prescriptions
to treat subsequent

678
00:36:32,526 --> 00:36:34,695
comorbidities, which
results in higher costs to

679
00:36:34,761 --> 00:36:37,397
the entire healthcare
system. That is what will

680
00:36:37,464 --> 00:36:40,133
increase premiums.
>> This rings true for

681
00:36:40,200 --> 00:36:42,903
Tamara.
>> The specific drug is not

682
00:36:42,970 --> 00:36:47,708
the only cost of chronic
disease. Chronic disease

683
00:36:47,774 --> 00:36:52,779
causes people to miss work,
end up in emergency rooms,

684
00:36:54,314 --> 00:36:57,217
hospital bills.
>> Drug manufacturers do

685
00:36:57,284 --> 00:37:00,554
not like accumulators
because the assistance

686
00:37:00,621 --> 00:37:04,324
doesn't go to help the
patient. She fears they may

687
00:37:04,391 --> 00:37:07,628
end up not providing the
assistance at all.

688
00:37:07,694 --> 00:37:10,330
>> I'm afraid that the
pharmaceutical companies

689
00:37:10,397 --> 00:37:13,500
stop the programs because
they're not helping the

690
00:37:13,567 --> 00:37:15,769
patients, and that would be
a real nightmare because

691
00:37:15,836 --> 00:37:19,306
then everybody would suffer.
This is where we're at in

692
00:37:19,373 --> 00:37:23,310
Wisconsin now, and I feel
bad for everybody who has a

693
00:37:23,377 --> 00:37:27,281
child or, you know, any
adult that runs into these

694
00:37:27,347 --> 00:37:32,186
issues because most people
are not prepared with that

695
00:37:32,252 --> 00:37:34,321
kind of money, and you
aren't going to get your

696
00:37:34,388 --> 00:37:36,523
medication.
>> There has been some

697
00:37:36,590 --> 00:37:38,592
movement in the state's
legislature to address

698
00:37:38,659 --> 00:37:41,929
things like copay
accumulators, open

699
00:37:41,995 --> 00:37:44,998
formularies and pharmacy
access. We're joined by

700
00:37:45,065 --> 00:37:48,035
someone on the front lines
of this work. Rob Gunderman,

701
00:37:48,101 --> 00:37:51,138
president and CEO of the
Coalition of Wisconsin

702
00:37:51,205 --> 00:37:53,574
Aging and Health Groups.
And thanks for being here.

703
00:37:53,640 --> 00:37:56,143
>> Thanks for having me.
>> So tell me a little bit

704
00:37:56,210 --> 00:37:58,846
about how you got started
in all of this.

705
00:37:58,912 --> 00:38:02,049
>> Sure. Well, I started
getting calls from patients

706
00:38:02,115 --> 00:38:04,051
who were trying to get
their medications. They'd

707
00:38:04,117 --> 00:38:06,320
go to the pharmacy counter,
and they were being told

708
00:38:06,386 --> 00:38:08,989
that it would be thousands
of dollars to get the

709
00:38:09,056 --> 00:38:11,258
medication that they're
used to paying 30, 40, $50,

710
00:38:11,325 --> 00:38:13,293
whatever their copay was.
And they were learning that

711
00:38:13,360 --> 00:38:16,530
a copay accumulator had
been applied to their

712
00:38:16,597 --> 00:38:18,899
policy. The one that really
struck me was a woman with

713
00:38:18,966 --> 00:38:21,235
a heart condition who
needed this heart

714
00:38:21,301 --> 00:38:23,737
medication to live, and she
went up like she always

715
00:38:23,804 --> 00:38:26,640
does to buy her medication.
They said it was gonna be

716
00:38:26,707 --> 00:38:28,976
$3,800. They didn't have
$3,800. And her husband had

717
00:38:29,042 --> 00:38:32,513
to go to the bank and take
out a loan so she could get

718
00:38:32,579 --> 00:38:34,681
the medication she needs to
live. And I realized, we

719
00:38:34,748 --> 00:38:37,518
have a problem here. And
that woman who I've come to

720
00:38:37,584 --> 00:38:40,454
know, she her family is
going into debt more and

721
00:38:40,521 --> 00:38:42,656
more every year having to
deal with this. So that's

722
00:38:42,723 --> 00:38:45,759
how I got involved in this.
>> And as you've been

723
00:38:45,826 --> 00:38:49,696
working on these issues, is
this just all too common?

724
00:38:49,763 --> 00:38:52,699
>> You know, when I started
out in this, it wasn't that

725
00:38:52,766 --> 00:38:55,736
common. It was I was seeing
in a plan here and people

726
00:38:55,802 --> 00:38:58,172
were starting to come to me.
Now it's become very common.

727
00:38:58,238 --> 00:39:00,174
It's spreading like
wildfire. There are very

728
00:39:00,240 --> 00:39:02,843
few plans left. I don't
even know of a plan left in

729
00:39:02,910 --> 00:39:05,012
Wisconsin that doesn't have
a copay accumulator other

730
00:39:05,078 --> 00:39:07,748
than the group, the state
insurance plan.

731
00:39:07,814 --> 00:39:11,518
>> And there's accumulators,
maximizers and those sound

732
00:39:11,585 --> 00:39:15,923
like good things.
>> They do. They use catchy

733
00:39:15,989 --> 00:39:18,492
terminology, and they've
probably run this through

734
00:39:18,559 --> 00:39:20,794
marketing groups to see
what what people like and

735
00:39:20,861 --> 00:39:23,063
what people don't like. But
you're exactly right. There

736
00:39:23,130 --> 00:39:25,265
are copay accumulators,
they're copay maximizers.

737
00:39:25,332 --> 00:39:27,801
They're all doing
essentially the same thing,

738
00:39:27,868 --> 00:39:30,204
but just from a little bit
different angle. You know,

739
00:39:30,270 --> 00:39:32,940
when you look at this copay,
accumulator piece, it just

740
00:39:33,006 --> 00:39:35,909
to me, this is just so
unfair and I don't it's

741
00:39:35,976 --> 00:39:38,145
been difficult for me to
understand how this has

742
00:39:38,212 --> 00:39:42,182
been allowed. If you and I
went out to dinner and I

743
00:39:42,249 --> 00:39:45,319
paid for your your dinner
and the restaurant said,

744
00:39:45,385 --> 00:39:49,456
we've adopted a copay
policy where you have to

745
00:39:49,523 --> 00:39:51,725
pay for your your meal and
you say, well, Rob already

746
00:39:51,792 --> 00:39:54,528
paid for my meal. Yes. And
we appreciate that. And

747
00:39:54,595 --> 00:39:57,598
we're going to keep his
money. But you also have to

748
00:39:57,664 --> 00:39:59,733
pay for your meal. You say,
this isn't fair. You're

749
00:39:59,800 --> 00:40:02,102
getting paid twice for the
meal. This is what the

750
00:40:02,169 --> 00:40:05,072
insurance companies are
fine.

751
00:40:05,639 --> 00:40:07,608
you've seen on patients?
What does this do to

752
00:40:07,674 --> 00:40:09,977
someone who's making this
impossible decision?

753
00:40:10,043 --> 00:40:12,412
>> Well, a couple of things.
One, the financial stress

754
00:40:12,479 --> 00:40:14,581
that it's putting families
under that just can't

755
00:40:14,648 --> 00:40:16,783
afford this. But the other
piece is I've had people

756
00:40:16,850 --> 00:40:18,986
tell me they're not going
to take their medication

757
00:40:19,052 --> 00:40:21,889
anymore. I had a friend of
mine who has Ms. And he

758
00:40:21,955 --> 00:40:24,658
says if they put one of
these copay accumulators on

759
00:40:24,725 --> 00:40:26,793
my policy, I'm going to
stop taking my medication.

760
00:40:26,860 --> 00:40:29,630
So you then end up with
more problems with their

761
00:40:29,696 --> 00:40:31,732
health. And I don't think
that's a cost saving

762
00:40:31,798 --> 00:40:33,901
measure by, you know,
taking this money, they may

763
00:40:33,967 --> 00:40:37,504
get some money out of it.
But I think in the long run,

764
00:40:37,571 --> 00:40:39,606
the increased health
expenses that you're going

765
00:40:39,673 --> 00:40:41,608
to have for people if they
stop taking their

766
00:40:41,675 --> 00:40:44,945
medications are going to
offset that.

767
00:40:45,012 --> 00:40:47,648
we've seen in these stories,
people don't know until

768
00:40:47,714 --> 00:40:51,018
they're so far along that
they owe all this extra

769
00:40:51,084 --> 00:40:54,688
money. There's no ability
to have a payment plan for

770
00:40:54,755 --> 00:40:58,058
your medications. So you
either get it or you don't.

771
00:40:58,125 --> 00:41:01,828
How difficult is it for
people to even know that

772
00:41:01,895 --> 00:41:04,631
something like this is on
their plan? How much of it

773
00:41:04,698 --> 00:41:09,303
is just poor communication?
>> That's a lot of it. It's

774
00:41:09,369 --> 00:41:12,573
very difficult. I've looked
at some of these plans, 50,

775
00:41:12,639 --> 00:41:16,243
60 pages, and who's going
to read 50 or 60 pages of

776
00:41:16,310 --> 00:41:19,146
fine print? Some of this is
a very small it's hard to

777
00:41:19,213 --> 00:41:21,281
read, especially if your
eyes aren't so good as mine

778
00:41:21,348 --> 00:41:24,117
aren't anymore. It's hard
to spot this little clause

779
00:41:24,184 --> 00:41:26,987
in there that says, and
even if you read it, if you

780
00:41:27,054 --> 00:41:29,489
don't know already what a
copay accumulator is,

781
00:41:29,556 --> 00:41:31,191
you're not going to
understand what they're

782
00:41:31,258 --> 00:41:33,961
saying in there.
>> Now, Senate President

783
00:41:34,027 --> 00:41:36,930
Mary Felzkowski has been
working on legislation like

784
00:41:36,997 --> 00:41:41,635
this for many years, many
sessions. What are the

785
00:41:41,702 --> 00:41:44,338
concerns that state
lawmakers have had making

786
00:41:44,404 --> 00:41:46,807
it so difficult to move
this forward?

787
00:41:46,874 --> 00:41:49,743
>> So I think the the one
thing that's really held us

788
00:41:49,810 --> 00:41:52,613
up with state law, well, a
couple of arguments that

789
00:41:52,679 --> 00:41:55,048
the insurers have made. One
is that this will drive

790
00:41:55,115 --> 00:41:58,085
patients to more expensive
brand name medications. We

791
00:41:58,151 --> 00:42:01,522
know 98% of the medications
in this group, these

792
00:42:01,588 --> 00:42:04,758
expensive medications there
isn't a generic for. But

793
00:42:04,825 --> 00:42:07,127
Senator Felzkowski put in
language in the bill saying

794
00:42:07,194 --> 00:42:09,496
that this only applies to
medications for which there

795
00:42:09,563 --> 00:42:12,966
is not a generic equivalent.
So that's off the table.

796
00:42:13,033 --> 00:42:15,536
There's still making that
argument, though. The other

797
00:42:15,602 --> 00:42:18,405
argument that we're hearing
is that it will drive up

798
00:42:18,472 --> 00:42:20,774
insurance premiums. But
there's studies that have

799
00:42:20,841 --> 00:42:23,277
been done looking at states
that have already passed

800
00:42:23,343 --> 00:42:26,413
this type of legislation
where the premiums haven't

801
00:42:26,480 --> 00:42:28,682
increased. And conversely,
studies have looked at

802
00:42:28,749 --> 00:42:31,084
states that haven't passed
this legislation and

803
00:42:31,151 --> 00:42:33,020
premiums aren't lower there,
like in Wisconsin, our

804
00:42:33,086 --> 00:42:35,022
premiums aren't lower where
we don't have that.

805
00:42:35,088 --> 00:42:37,524
>> Where does it currently
stand? And what, if

806
00:42:37,591 --> 00:42:40,661
anything, has changed
throughout this session as

807
00:42:40,727 --> 00:42:42,963
it's gone through committee?
>> Sure. Well, we had a

808
00:42:43,030 --> 00:42:45,465
committee hearing, which
was the first. This is the

809
00:42:45,532 --> 00:42:48,135
second session that we've
tried to run this bill, and

810
00:42:48,202 --> 00:42:51,138
we weren't able to get a
vote out of committee last

811
00:42:51,205 --> 00:42:53,974
session. This session,
we've got a 5 to 0 vote. So

812
00:42:54,041 --> 00:42:56,210
the entire committee voted
in favor of passing this

813
00:42:56,276 --> 00:42:59,546
out in the Senate. And we
expect that to come up to

814
00:42:59,613 --> 00:43:02,049
the onto the floor at some
point in January. We just

815
00:43:02,115 --> 00:43:05,586
don't know when. And so,
you know, there's a

816
00:43:05,652 --> 00:43:09,022
definite shift here where
the momentum has shifted. I

817
00:43:09,089 --> 00:43:11,258
think there are 40
co-sponsors on the bill.

818
00:43:11,325 --> 00:43:13,861
But I think I think the
votes are there to pass the

819
00:43:13,927 --> 00:43:16,597
bill. If we can get the
votes.

820
00:43:17,664 --> 00:43:21,335
next story, that he didn't
know that the formulary had

821
00:43:21,401 --> 00:43:23,003
changed. And that's
something that's been a

822
00:43:23,070 --> 00:43:25,839
point of contention in the
legislation. Has that

823
00:43:25,906 --> 00:43:28,208
changed as it's gone
through committee?

824
00:43:28,275 --> 00:43:30,677
>> Yeah. So the insurers
wanted to be able to change

825
00:43:30,744 --> 00:43:33,814
the formulary throughout
the year. And right now

826
00:43:33,881 --> 00:43:36,650
they could only change it
during the window and

827
00:43:36,717 --> 00:43:38,752
people can change plans.
And I said we didn't have a

828
00:43:38,819 --> 00:43:41,822
problem with that. As long
as they weren't able to

829
00:43:41,889 --> 00:43:44,992
force the patient to change
their medication mid-year.

830
00:43:45,058 --> 00:43:47,227
So I think it's actually a
benefit to patients,

831
00:43:47,294 --> 00:43:50,230
because if you're going to
to make a formulary change,

832
00:43:50,297 --> 00:43:54,134
tell them in June or July,
give them as much time as

833
00:43:54,201 --> 00:43:56,336
possible to figure out what
they're going to do and

834
00:43:56,403 --> 00:43:58,572
find a new plan that will
cover whatever the

835
00:43:58,639 --> 00:44:00,607
medication is that they're
taking that is going to be

836
00:44:00,674 --> 00:44:03,377
leaving your formulary. So
I think I don't see a

837
00:44:03,443 --> 00:44:05,913
downside to that.
>> Overall, premiums are

838
00:44:05,979 --> 00:44:08,782
going up. If people feel
like they're not properly

839
00:44:08,849 --> 00:44:11,618
covered under a plan that
they're paying a lot of

840
00:44:11,685 --> 00:44:13,987
money for every month, do
you think patients will

841
00:44:14,054 --> 00:44:17,291
just end up foregoing a
health plan altogether?

842
00:44:17,357 --> 00:44:20,194
>> That's our that's our
concern, our worry. I think

843
00:44:20,260 --> 00:44:22,829
there are people who
they're going to look at

844
00:44:22,896 --> 00:44:25,632
this and say, I'm paying so
much out of pocket anyway.

845
00:44:25,699 --> 00:44:27,734
I'm not ever using the
insurance, so what's the

846
00:44:27,801 --> 00:44:29,937
point of having it? And
then when they have

847
00:44:30,003 --> 00:44:32,172
something serious happen,
then it's more problems.

848
00:44:32,239 --> 00:44:36,243
And it's not like someone
isn't paying for that.

849
00:44:36,310 --> 00:44:39,146
>> Now we just saw Congress
go through the longest

850
00:44:39,213 --> 00:44:42,749
government shutdown in
history over these enhanced

851
00:44:42,816 --> 00:44:47,487
tax credits, and we're
still seeing premiums go up

852
00:44:48,522 --> 00:44:51,792
all around. How much of
this is kind of reaching a

853
00:44:51,859 --> 00:44:55,429
turning point as healthcare
premiums, costs are all

854
00:44:55,495 --> 00:44:58,899
going up and there doesn't
seem to be an end in sight.

855
00:44:58,966 --> 00:45:01,001
>> We're getting to the
point where something has

856
00:45:01,068 --> 00:45:03,570
to happen and we can't. My
insurance went up almost

857
00:45:03,637 --> 00:45:07,074
25% this year. We can't
have 25% annual increases

858
00:45:07,140 --> 00:45:10,043
in our health costs, just
as Americans. We can't

859
00:45:10,110 --> 00:45:12,546
afford it. So we have to
figure something out. And I

860
00:45:12,613 --> 00:45:15,549
don't know what that answer
is. I mean, people, smarter

861
00:45:15,616 --> 00:45:17,718
people than me, have been
trying to figure this out

862
00:45:17,784 --> 00:45:20,554
for a very long time. But
we're getting to the point

863
00:45:20,621 --> 00:45:23,390
where we have to. This
isn't an option anymore. We

864
00:45:23,457 --> 00:45:25,626
can't afford to keep going
the way that we're going.

865
00:45:25,692 --> 00:45:29,763
And for a lot of families
without the the Affordable

866
00:45:29,830 --> 00:45:32,399
Care Act plans being
available to them, I think

867
00:45:32,466 --> 00:45:35,802
we have a lot of people who
are just not going to be

868
00:45:35,869 --> 00:45:37,971
insured.
much for joining us.

869
00:45:38,038 --> 00:45:40,207
>> Thanks.
>> As we've seen, most

870
00:45:40,274 --> 00:45:42,209
patients don't get the
option of a payment plan

871
00:45:42,276 --> 00:45:44,411
for these costly
prescriptions. You either

872
00:45:44,478 --> 00:45:47,881
pay up front or you don't
receive treatment. In all

873
00:45:47,948 --> 00:45:51,385
of these stories, complex
diagnoses, convoluted

874
00:45:51,451 --> 00:45:55,589
health plans, decreasing
access, and steep prices

875
00:45:55,656 --> 00:45:58,592
are overwhelming patients
with impossible decisions.

876
00:45:58,659 --> 00:46:01,595
But they're not always
alone. Patient advocates

877
00:46:01,662 --> 00:46:04,431
are stepping in, using
their knowledge of the

878
00:46:04,498 --> 00:46:06,900
system and doing what they
can to make sure patients

879
00:46:06,967 --> 00:46:10,437
are getting the treatment
they need.

880
00:46:10,504 --> 00:46:14,141
>> How far are they away
from bankruptcy?

881
00:46:14,208 --> 00:46:18,712
>> They pretty much billed
me $83,000 per infusion.

882
00:46:18,779 --> 00:46:23,016
>> They are as far away as
a chronic diagnosis.

883
00:46:24,685 --> 00:46:28,355
>> The right medication can
be expensive, but critical

884
00:46:28,422 --> 00:46:31,558
for chronic illness
patients. Advocates like

885
00:46:31,625 --> 00:46:33,894
Nilsa Cruz know this all
too well.

886
00:46:33,961 --> 00:46:38,532
>> The reason why I became
a patient advocate is it

887
00:46:39,566 --> 00:46:42,135
was actually baptism by
fire.

888
00:46:42,202 --> 00:46:44,671
>> When she started as
administrator for the

889
00:46:44,738 --> 00:46:47,908
Milwaukee Rheumatology
Center more than 20 years

890
00:46:47,975 --> 00:46:51,378
ago, she also became the
clinic's de facto patient

891
00:46:51,445 --> 00:46:54,548
advocate.
>> Patients coming back or

892
00:46:54,615 --> 00:46:58,418
calling back because their
medication is not covered.

893
00:46:58,485 --> 00:47:02,456
Perhaps they cannot afford
the out-of-pocket expense.

894
00:47:02,523 --> 00:47:07,528
After going through a very
tedious process of a prior

895
00:47:07,594 --> 00:47:10,264
authorization, only to come
and find out that it's

896
00:47:10,330 --> 00:47:14,268
unaffordable. Delays and
denials some patients

897
00:47:14,334 --> 00:47:16,403
suffering, too, because the
patients really don't

898
00:47:16,470 --> 00:47:19,339
understand what's going on
with their benefits.

899
00:47:19,406 --> 00:47:22,442
>> Today, she's known and
even sought out for her

900
00:47:22,509 --> 00:47:25,812
ability to help patients
navigate complex health

901
00:47:25,879 --> 00:47:27,848
benefits.
>> I come to this clinic

902
00:47:27,915 --> 00:47:31,251
because of their patient
advocate.

903
00:47:32,052 --> 00:47:34,922
>> Janelle Zeihen came to
Cruz when her last clinic

904
00:47:34,988 --> 00:47:37,991
didn't know how to help her
navigate her health plan

905
00:47:38,058 --> 00:47:40,727
benefits, so she came to
this rheumatology clinic

906
00:47:40,794 --> 00:47:44,464
for her Crohn's, a type of
inflammatory bowel disease.

907
00:47:44,531 --> 00:47:47,434
>> It starts with like a
like somebody sucker

908
00:47:47,501 --> 00:47:49,603
punching me right up into
my chest. And then and

909
00:47:49,670 --> 00:47:51,939
that's pretty much the
inflammation starting.

910
00:47:52,005 --> 00:47:54,775
>> Crohn's disease can be
debilitating and life

911
00:47:54,842 --> 00:47:57,244
threatening, especially
when not treated.

912
00:47:57,311 --> 00:48:00,647
>> It is extremely painful.
I can barely walk when it

913
00:48:00,714 --> 00:48:03,951
happens. Being on the
entyvio that I get, it's

914
00:48:04,017 --> 00:48:07,254
been life changing.
>> When she got a new job,

915
00:48:07,321 --> 00:48:11,024
her entyvio was no longer
covered. Under her new plan.

916
00:48:11,091 --> 00:48:13,961
>> They specifically carved
out all tier four drugs

917
00:48:14,027 --> 00:48:18,365
which are chemos, HIV drugs
and any infusions.

918
00:48:18,999 --> 00:48:22,035
>> Tier four drugs are also
referred to as specialty

919
00:48:22,102 --> 00:48:24,738
drugs.
>> When you have a complex

920
00:48:24,805 --> 00:48:27,774
condition, what you get
slapped with is this

921
00:48:27,841 --> 00:48:32,846
penalty called specialty
drug, because a pharmacist

922
00:48:33,547 --> 00:48:37,117
might have to monitor or
look at something more

923
00:48:37,184 --> 00:48:39,152
closely, which they should
be doing for every drug

924
00:48:39,219 --> 00:48:41,755
anyway.
>> And Lewandowski also

925
00:48:41,822 --> 00:48:44,658
knows how difficult but
essential it is finding the

926
00:48:44,725 --> 00:48:47,528
right medication.
>> Accessing it because of

927
00:48:47,594 --> 00:48:51,532
insurance barriers and
other issues can also be as

928
00:48:51,598 --> 00:48:55,202
much or more challenging.
>> She has her own

929
00:48:55,269 --> 00:48:57,971
experience with autoimmune
disorders and health care.

930
00:48:58,038 --> 00:49:00,107
>> You're really in
survival mode and you're

931
00:49:00,174 --> 00:49:02,943
just trying to figure out,
like, do I go to work and

932
00:49:03,010 --> 00:49:06,780
make money? Or do I deal
with this disease.

933
00:49:06,847 --> 00:49:09,816
>> Part of her expertise.
>> I am also a patient.

934
00:49:09,883 --> 00:49:12,719
>> Comes from being a
patient, and she uses that

935
00:49:12,786 --> 00:49:15,923
knowledge to help others
better understand these

936
00:49:15,989 --> 00:49:18,892
complex systems.
>> We have these market

937
00:49:18,959 --> 00:49:22,429
distortions, right. We have,
depending on what your

938
00:49:22,496 --> 00:49:26,733
diagnosis is, who your
insurance company is, two

939
00:49:26,800 --> 00:49:31,538
patients walking in with
even the same diagnosis are

940
00:49:31,605 --> 00:49:34,575
going to be charged
completely different prices.

941
00:49:34,641 --> 00:49:38,378
And I think that's really
problematic.

942
00:49:38,445 --> 00:49:42,649
>> I've seen plan documents
where they're limiting, you

943
00:49:42,716 --> 00:49:46,286
know, drug expenditure,
like anything over 100,000

944
00:49:46,353 --> 00:49:50,457
is out. I've seen plan
documents where cancer

945
00:49:50,524 --> 00:49:54,628
drugs are not covered,
where none of none of the

946
00:49:54,695 --> 00:49:56,964
rheumatology drugs are
covered.

947
00:49:57,030 --> 00:49:59,967
>> Often patients that
can't afford an expensive

948
00:50:00,033 --> 00:50:02,936
drug qualify for patient
assistance programs through

949
00:50:03,003 --> 00:50:05,939
the pharmaceutical company.
But these programs are

950
00:50:06,006 --> 00:50:08,675
usually for people with
little to no health

951
00:50:08,742 --> 00:50:11,545
coverage.
>> I am insured at $400

952
00:50:11,612 --> 00:50:14,381
premium cost.
>> Janelle was covered by

953
00:50:14,448 --> 00:50:18,352
her employer's self-funded
health plan, even though it

954
00:50:18,418 --> 00:50:21,688
specifically carved out her
medication, leaving her to

955
00:50:21,755 --> 00:50:25,025
cover the cost.
>> Big time. Pharma is

956
00:50:25,092 --> 00:50:27,628
starting to say, no, it's
not happening. Companies

957
00:50:27,694 --> 00:50:32,699
are saying these funds are
patients who are literally

958
00:50:32,766 --> 00:50:36,203
uninsured. Pharma will deny
that free drug for the

959
00:50:36,270 --> 00:50:39,072
patient because benefits
have been carved out and

960
00:50:39,139 --> 00:50:44,144
made non-essential by the
plan. And you're literally

961
00:50:45,913 --> 00:50:49,316
functionally uninsured.
>> Having coverage, at

962
00:50:49,383 --> 00:50:52,686
least on paper,
disqualified her for

963
00:50:52,753 --> 00:50:56,423
patient financial
assistance. Why? Some drugs

964
00:50:56,490 --> 00:51:00,661
are covered by some health
plans and not others is an

965
00:51:00,727 --> 00:51:05,799
opaque and complex system.
>> The pricing structure in

966
00:51:05,866 --> 00:51:10,704
this country when it comes
to pricing these drugs and

967
00:51:10,771 --> 00:51:14,708
reimbursement, and what
actual costs are, is so

968
00:51:14,775 --> 00:51:17,444
messed up. It's so messed
up.

969
00:51:18,378 --> 00:51:21,849
>> These carve outs to not
cover expensive drugs are

970
00:51:21,915 --> 00:51:25,152
becoming more common among
self-funded health plans

971
00:51:25,219 --> 00:51:28,188
like Janelle's, which are
governed by different laws

972
00:51:28,255 --> 00:51:31,258
than fully insured health
plans.

973
00:51:31,325 --> 00:51:34,661
>> We know health insurance
can be complicated and

974
00:51:34,728 --> 00:51:37,464
confusing.
>> Secretary 'Nathan Houdek

975
00:51:37,531 --> 00:51:40,434
oversees the office of the
Commissioner of Insurance.

976
00:51:40,501 --> 00:51:42,970
>> And what makes it even
more confusing for people

977
00:51:43,036 --> 00:51:46,340
is that health insurance is
really regulated by a

978
00:51:46,406 --> 00:51:48,876
number of different
agencies, at both the

979
00:51:48,942 --> 00:51:52,613
federal and state levels.
>> This state agency

980
00:51:52,679 --> 00:51:55,883
regulates fully insured
health plans. If a patient

981
00:51:55,949 --> 00:51:59,186
wants to challenge an
insurance denial, they come

982
00:51:59,253 --> 00:52:02,456
here.
don't understand, if they

983
00:52:02,523 --> 00:52:05,692
have employer sponsored
coverage, is whether that's

984
00:52:05,759 --> 00:52:08,862
fully insured coverage or
whether that is self-funded

985
00:52:08,929 --> 00:52:11,565
coverage.
>> Self-funded coverage is

986
00:52:11,632 --> 00:52:15,435
regulated by federal law.
But you can still start

987
00:52:15,502 --> 00:52:19,239
with this office.
>> If someone has health

988
00:52:19,306 --> 00:52:22,509
insurance coverage through
a self-funded plan, then we

989
00:52:22,576 --> 00:52:25,779
will kind of hand them off
to we like to refer to as

990
00:52:25,846 --> 00:52:29,283
kind of a warm handoff to
the Department of Labor,

991
00:52:29,349 --> 00:52:31,552
because it's the federal
Department of Labor that

992
00:52:31,618 --> 00:52:34,521
actually regulates
self-funded plans.

993
00:52:34,588 --> 00:52:37,758
>> Because of this, no
matter what kind of plan,

994
00:52:37,824 --> 00:52:41,528
Secretary Houdek recommends
reaching out.

995
00:52:41,595 --> 00:52:44,464
>> Unfortunately, studies
have shown that of all the

996
00:52:44,531 --> 00:52:49,136
coverage and claim denials,
only a small percentage are

997
00:52:49,203 --> 00:52:51,572
appealed. And that's really
because people don't know

998
00:52:51,638 --> 00:52:54,007
what their rights are.
People don't know that

999
00:52:54,074 --> 00:52:57,177
there is a place where they
can turn to answer

1000
00:52:57,244 --> 00:53:00,547
questions, to be a resource,
and our office is here to

1001
00:53:00,614 --> 00:53:03,817
help with that.
>> Fully insured versus

1002
00:53:03,884 --> 00:53:06,687
self-funded plans. Health
experts say they both have

1003
00:53:06,753 --> 00:53:10,324
their own issues. The rules
are just different.

1004
00:53:10,390 --> 00:53:13,594
>> I have a lot of empathy
for employers, right? I

1005
00:53:13,660 --> 00:53:17,431
mean, if you are a
manufacturer here in

1006
00:53:17,497 --> 00:53:21,401
Wisconsin, you're making
cheese, you're making steel

1007
00:53:21,468 --> 00:53:25,606
parts, whatever. Making
yachts, it really doesn't

1008
00:53:25,672 --> 00:53:28,976
matter. You are not a
health care expert.

1009
00:53:29,042 --> 00:53:32,613
>> For Janelle, her case
was even more complicated

1010
00:53:32,679 --> 00:53:35,549
than most. But Cruz was
with her every step of the

1011
00:53:35,616 --> 00:53:37,417
way.
>> First of the year and go

1012
00:53:37,484 --> 00:53:39,586
through.
>> I remember that

1013
00:53:39,653 --> 00:53:44,558
conversation. Janelle, you
settle on not getting my

1014
00:53:45,192 --> 00:53:47,794
treatment this year.
>> She helped Janelle file

1015
00:53:47,861 --> 00:53:50,664
a complaint with the US
Department of Labor.

1016
00:53:50,731 --> 00:53:54,968
>> Please keep in mind that
for any given patient to

1017
00:53:55,035 --> 00:53:58,805
file a complaint with the
Department of Labor takes

1018
00:53:58,872 --> 00:54:03,143
guts. Because you're now
dealing with filing a

1019
00:54:03,210 --> 00:54:07,681
complaint against your
employer and the fear of

1020
00:54:09,016 --> 00:54:12,619
getting fired, even though
it's totally illegal.

1021
00:54:12,686 --> 00:54:15,522
>> It does make it hard to
go into work, because I

1022
00:54:15,589 --> 00:54:17,791
also don't know if I'm
going to be walking into

1023
00:54:17,858 --> 00:54:19,793
work and being walked out
because of this for

1024
00:54:19,860 --> 00:54:21,895
retaliation or whatnot.
>> There are still these

1025
00:54:21,962 --> 00:54:26,533
very gray questions of law
that honestly make me a

1026
00:54:27,935 --> 00:54:31,538
little scared to be a
patient and speak up and

1027
00:54:31,605 --> 00:54:36,076
encourage people to
exercise their legal rights,

1028
00:54:36,143 --> 00:54:40,180
which are to speak to their
employer and say, hey, this

1029
00:54:40,247 --> 00:54:43,917
is a wrong denial.
>> During open enrollment,

1030
00:54:43,984 --> 00:54:47,421
Janelle decided not to use
her employer's health plan,

1031
00:54:47,487 --> 00:54:50,524
opting to find a fully
insured one on the

1032
00:54:50,591 --> 00:54:52,693
marketplace.
>> If I were to go through

1033
00:54:52,759 --> 00:54:54,895
my employer, I would be
right back to where I

1034
00:54:54,962 --> 00:54:57,531
started and that would be
just that's not even an

1035
00:54:57,598 --> 00:55:00,234
option.
>> She pays more in

1036
00:55:00,300 --> 00:55:03,337
premiums, but her
medication is covered.

1037
00:55:03,403 --> 00:55:06,073
Without the help of
advocates, many patients

1038
00:55:06,139 --> 00:55:09,076
are left deciding between
their medication or their

1039
00:55:09,142 --> 00:55:12,346
savings.
>> Can patients do this

1040
00:55:12,412 --> 00:55:17,551
themselves? Probably not,
because the statistics have

1041
00:55:17,618 --> 00:55:21,622
shown that very few
patients will take it to

1042
00:55:22,122 --> 00:55:26,793
the next level. It's too
cumbersome. If you look at

1043
00:55:27,895 --> 00:55:32,799
denial letters, the steps
are in there, and it's even

1044
00:55:34,668 --> 00:55:39,339
cumbersome for me. However,
having said that, I'm

1045
00:55:40,774 --> 00:55:45,746
constantly looking for ways
to make it easier for my

1046
00:55:45,812 --> 00:55:49,149
patients to appeal.
>> For her patients, Cruz

1047
00:55:49,216 --> 00:55:52,052
goes all in to help them
find relief.

1048
00:55:52,119 --> 00:55:54,621
>> Thanks for everything.
>> Relief from the physical

1049
00:55:54,688 --> 00:55:57,958
pain of a chronic illness
and relief from the

1050
00:55:58,025 --> 00:56:02,162
financial pain of treating
it. For more on this and

1051
00:56:02,229 --> 00:56:04,898
other issues facing
Wisconsin, visit our

1052
00:56:04,965 --> 00:56:08,902
website at PBS Wisconsin.
Org and click on the news

1053
00:56:08,969 --> 00:56:12,039
tab. That's our program for
tonight. I'm Marissa Wojcik.

1054
00:56:12,105 --> 00:56:13,774
[MUSIC]

1055
00:56:43,804 --> 00:56:46,373
>> Funding for "Here& Now"
is provided by the Focus

1056
00:56:46,440 --> 00:56:51,111
Fund for Journalism and
Friends of PBS Wisconsin.