>> The following program is a PBS Wisconsin original
production. >> I just remember walking
in and she had it written down on a piece of paper,
no longer covered by insurance.
>> What would you do? >> We always assume that he
kind of ran some life choices and said rent or
this, and thought he could do without it.
>> If your medicine was suddenly not covered by
insurance. >> We need $13,000 before
we can ship this. [MUSIC]
And I said $13,000. >> If you had to pay
hundreds or thousands of dollars up front.
>> Yes. to be delivered without
insurance. >> Before getting a life
saving prescription. >> Because the patients
really don't understand what's going on with their
benefits. >> And it all seems too
complicated to understand. [MUSIC]
survival mode, and you're just trying to figure out,
like, do I go to work and make money? Or do I deal
with this disease? >> We have the fifth
highest health care costs in the nation, and our
quality does not reflect that.
>> These patients are confused, they're
overwhelmed, and they're forced into impossible
decisions about their health.
>> Good evening. I'm Marissa Wojcik, series
producer of Here and Now. Tonight on our program,
we're bringing you a series of stories about
prescription medication becoming increasingly
unaffordable in Rx Uncovered. We'll dive into
the complex systems driving these trends and the
stories of patients facing life or death choices. We
look at how and why more health plans are not
covering life saving medication. The real life
impacts this is having on Wisconsin patients, who's
trying to change it, and what you should know about
your plan. It's "Here& Now" for January 2nd.
>> Funding for "Here& Now" is provided by the Focus
Fund for Journalism and Friends of PBS Wisconsin.
>> Have you ever gone to pick up a routine
prescription? And the co-pay is suddenly very
different. But your plan hasn't changed. This is
what's called a flexible formulary, and they're
actually quite common. Now, the companies that manage
prescription plans say that this allows them to save
you money, but it can have the opposite effect as well.
Our first story is about a young man with chronic
asthma, and when he went to the pharmacy, couldn't
afford the sudden spike in the price of his medicine.
>> Well, we got told, you know, just simply that he
would never wake up. >> Bill and Shannon
Schmidtknecht had just heard the worst news of
their life. >> That all I remember is
collapsing on him and the nurses sliding chairs
behind us. >> Their oldest son, Cole,
suffered an asthma attack. His roommate rushed him to
the ER, and his heart stopped beating two minutes
before they arrived. >> When he arrived at the
hospital, he was lifeless. He had no pulse. They had
to resuscitate him. >> But the prognosis wasn't
good. >> They were no longer
seeing the brain activity. They were no longer seeing
any hope that there would be any type of recovery.
That essentially what we saw laying in the hospital
of our son was all that he would ever be.
>> The 22 year old laying in that hospital just days
earlier was happy and healthy. Bill and Shannon
were mystified. >> Yes. When I grab on to
him like I just couldn't, you're like, this cannot be
happening. >> In the days that
followed, Bill and Shannon watched their son fulfill
an organ donation before watching him take his final
breath. >> Cole had had asthma his
whole life. He was on a great medication that
stabilized his asthma for the past decade or more. So
we were like, this cannot be.
>> Still in shock. They didn't understand how this
could have happened and why Cole didn't have his
medication. day.
>> Their quest for answers began as grieving parents.
More than a year later, they retell Cole's story,
hoping for change. >> We always felt there was
something that was unanswered.
>> The little they did know was from Cole's best friend
and roommate, who said Cole did go to the pharmacy days
earlier but couldn't get his asthma medication
refilled. don't know. We tried to get
it a few days ago and he couldn't afford it. It was
like $500 and we were like, no, no, no, no. There has
to be like. >> Something.
>> Something happened. Like he didn't give.
>> Both Cole and his father managed the same chronic
asthma their whole lives. They used the same
prescription inhaler and they worked for the same
company, meaning they had the same health coverage.
>> Probably a few weeks later, texted her, hey, can
you swing by the pharmacy and grab my steroid
medicine too? >> I just remember walking
in and she had it written down on a piece of paper,
no longer covered by insurance. She worked her
magic and made a phone call. Even stayed after they were
open and, you know, did what she had to do to get
something for me to take home so that he had
something. >> This was the first
glimpse into what may have happened in the days
leading up to Cole's death. Health coverage from the
employer had changed, and with it, the out of pocket
cost. >> They were told
specifically as employees that it would be a seamless
transition. Pharmacy benefits would be seamless.
Prescription coverage would be seamless.
>> The unique thing, though, is we stayed with the same
pharmacy benefit manager. >> What did change without
their knowledge was their prescription benefits
formulary. The list of preferred drugs covered by
the health plan. These lists are compiled of name,
brand, and generic medications categorized
into tears. Tier one is the most preferred by the plan
and has the lowest co-pays. The higher the tier, the
more the patient pays out of pocket.
>> I will never forget that leaving that pharmacy and
being like, oh my God, the this is what happened to
Cole. >> The preventative asthma
medication that Cole relied upon was moved to a higher
tier that he suddenly could not afford.
>> We always assume that he kind of ran some life
choices and said rent or this, and thought he could
do without it. Five days after that, he texted me
that he was having a hard time breathing.
>> The parallel details around Bill and Cole's
condition, medication and health plan helped the
Schmidtknecht understand how Cole's pharmacy visit
differed from Bill's. >> The difference is he
didn't have this pharmacist or any caring independent
pharmacist or whomever to stop for five seconds.
>> Bill's pharmacist made sure he got the lifesaving
medication he needed. >> She was like, so we got
to figure this out. You're not leaving here with
nothing for for him, for Bill.
for sure what happened to Cole at the pharmacy that
day, many, including Bill's pharmacist, are convinced.
>> Honestly, she believes this is what contributed to
Cole's death was the fact that he didn't get his
medicine walking out of the pharmacy. You know, she she
can't make that judgment for sure, but she felt that
way. >> And you could tell he
was the love of our life. One day with him and I were
laying in the yard looking up at the sky. He looked at
grandpa. When you eat the habit, will you save me a
seat? Right here. >> In March of 2025, Senate
President Mary Felzkowski reintroduced legislation
that she and the Schmidtknecht believe could
have helped Cole get his medication.
>> At some point, somebody has to say enough is enough
and put some guardrails around this.
>> The bill contains a number of measures aimed at
protecting independent pharmacies and adding
regulations against pharmacy benefit managers,
or PBMs. >> PBMs are essentially a
middleman hired by insurance companies to
manage patient prescription drug benefit programs.
>> And they're actually adversely driving up the
cost of drugs and controlling whether or not
you get the medication that's been prescribed to
you. >> Newly dubbed Cole's Act,
this is the third time the multi-pronged legislation
has been authored. >> I watched what happened
with the first PBM bill. It got really stripped down in
the Assembly. We're not going to allow that to
happen this time around. We are going to pass
meaningful legislation. >> One part of the bill
deals specifically with drug formularies, saying a
plan cannot change a drugs tier except at the time of
coverage renewal. Historically, employer and
insurance groups have opposed this legislation,
fearing it will increase costs.
>> Marketplace events occur throughout throughout the
year that impact the price of prescription drugs. By
implementing a frozen formulary, payers and plans
will be limited in their ability to take advantage
of new reduced prices. Generic.
hard on showing them through data from other
states that have allowed that have the same
legislation, where it's actually lowered the cost
of health care. >> I can't believe it's
been almost a year that he's gone. Yeah, exactly.
>> One year after Cole's passing, his parents filed
a negligence lawsuit against the pharmacy
benefit manager and the chain pharmacy where Cole
went to try and pick up his inhaler. The complaint says
no notification went out that the formulary had
changed, and the pharmacist should have offered a
generic alternative. It lists a number of points of
failure, many of which violate Wisconsin law. In a
motion to dismiss, the PBM argues that because Cole's
health plan is what's called self-funded, these
types of employer sponsored benefits are not
technically health insurance. They're largely
not subject to state law and exclusively a federal
concern. >> We can't keep waiting
for Washington. My constituents can't afford
to keep waiting for Washington on a number of
things. And I believe in states rights. And it's
time that the states need to step up. You know, we
have the fifth highest health care costs in the
nation, and our quality does not reflect that.
>> Congressional committees and federal agencies have
been sounding some alarm on practices rampant across
the industry. The Federal Trade Commission released a
2025 report investigating the top three PBM companies
for inflating drug prices, seeing UnitedHealth group's
Optumrx, CVS Caremark and Cigna's Express Scripts
increased prices hundreds or thousands of times over,
putting $7.3 billion back into their pockets from
2017 to 2022. Amid a complex system, Cole's
parents believe more should have been done.
>> How will this bill have saved Cole?
>> I'm going to defer to Cole's dad for that.
>> The reality is, any portion of a bill that
would prevent the slowdown at the pharmacy counter,
there's so many. Had he done this or had he went to
this type of pharmacy? The ultimate thing, no matter
totally preventable. I mean, like, it was preventable.
Please don't let another parent stand where we are
today. >> We've just taken a
totally different look at so many things in life.
It's all because this can not happen. This cannot
happen to another family. >> As you just heard,
Cole's health plan is what's called self-funded.
And as we learn in our next story, self-funded health
plans are not technically health insurance. While
they both do a lot of the same things, self-funded
health plans do not adhere to the same laws as health
insurance. Our next story is about a leukemia patient
who learned this the hard way. Despite the promise of
a life saving treatment, his self-funded health plan
wasn't going to help. >> All of a sudden, my
numbers were at like 167,000, compared to like 4
or 5000. >> Kevin Walz has what's
called chronic lymphocytic leukemia, or 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. >> We need $13,000 before
we can ship this. And I said $13,000. Yes. That's
what this drug costs to be delivered without insurance.
>> He soon discovered his health plan wouldn't be
covering a dime of his medication, calling it a
nonpreferred 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 $13,000 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 going to do next month?
>> His clinic pleaded with his health plan to cover
some portion of his life saving medication under the
Affordable Care Act. Health insurance plans have cost
sharing requirements and limits to what a patient
has to pay out of pocket. Covering prescription drugs
is considered an essential health benefit. However,
Kevin's health plan doesn't fall under the ACA because
it's not technically insurance. Instead, his
health coverage through his employer is what's called a
self-funded plan. These plans are also known as
self-insured, which is a bit of a misnomer.
>> We don't cover that because we're a self funded
insurance company. >> Self-funded plan is not
insurance. >> Sarah Davis is the
director of the center for Patient Partnerships, a
research and advocacy program at UW-Madison.
>> Being insurance is what triggers state regulation,
and there are rules those companies need to follow in
terms of mandatory benefits they need to cover, right.
If there are claims being denied the protections that
that consumer has are reduced in self-funded
plans. >> Today, self-funded plans
are the most predominant form of health coverage in
the US because they help employers save money.
>> Self-funding lets the employer take control of
the second or third biggest line item on their budget.
>> Mike Roach is the director of business
development at the Alliance, a Wisconsin organization
that helps employers design self-funded health plans.
>> If you're if you're not trying to manage it and
you're fully insured, you're going to get an
increase probably every year. The last few years,
that's been a double digit increase. And it's getting
more and more difficult for employers to find a way to
control that cost. >> Making it difficult for
employers to afford health coverage.
>> The reason that self-funded plans came
about is that employers realized they were paying a
fixed amount to the insurance company, and then
it was the insurance company had that, while
holding the risk could make the profit. And so
employers realized, hey, we if we hold all that money
ourselves and only pay a certain percentage in
claims, we're keeping that profit. The concern I have
as a health advocate is that a large motivation for
having a self-funded plan is to save money, and the
place that the that the money is saved is in paying
out less claims. >> A recent study shows the
top issue for Wisconsin businesses is to make
health care more affordable. That same study says the
majority of people in Wisconsin are very worried
about their cost of health care.
>> Knowing that your self-funded and that
there's value to be found if you, as the employee,
are good stewards of the plan and seek value, that
should have a trickle down effect so that the next
year you don't see your part of that premium go up.
You may not have to change deductibles or coinsurance
so you can get some stability in your plan.
>> But it's often difficult for people to even know
what kind of plan they have. >> It takes advocates and
patients, sometimes quite a bit of time to parse out
and figure out that it is not insurance.
>> A lot of it comes back to transparency. What
employees 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, coinsurance, what's on their formulary
list from their PBM, who's in network from a doctor
and hospital standpoint, that's going to cover 95 to
98% of everything they do during the year.
>> So who pays for the big ticket items?
>> You know, there's a couple of drugs coming out.
They're going to be $3 million apiece. How am I
going to cover those? And how does that trickle down
to the humerus and the stellaris that folks need
on a more regular basis, but are still, you know,
thousands of dollars a month?
>> Advocates say self-funded plans can
create a conflict of interest for employers who
suddenly have an employee with expensive health needs.
>> Maybe you could check 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 going to lose benefits. I'm going to
lose my insurance, and I'm going to be part time. Is
this a way to weed me out eventually.
>> 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. >> The side effects of
dealing with it all took a toll.
>> One day I sat on my phone on hold from one of
the drug companies for over six hours, just stressing
me out to the point where I was not paying attention to
my healing. >> Advocates at his clinic
didn't let up. >> They're very persistent,
very persistent. >> Exhausting every
possible avenue to access his medicine. After months
of setbacks, good news arrived from his clinic.
>> She kept calling me and calling me and calling me.
She couldn't tell me the news fast enough that they
had come through. >> The drug manufacturer
said they were going to provide the remaining dose
of his treatment at no cost. >> I don't think anybody
should have to fight for their life like that. It's
hard enough just to sit back and think about me not
being here for the people around me. I worry about
not being here. Normal. I guess.
>> I worry for people who don't have hours and hours
and hours to read fine print and, you know, make
sure that they're going to get what they need. If, you
know, if they get ill. >> In the end, Kevin hopes
some good will come from his experience.
>> 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.
>> These two stories are examples of some of the
direct impacts patients are experiencing. But if we
zoom out, the big picture has many moving parts that
make up the system of prescription medication.
From research and development to
manufacturing, wholesalers, prescribers, and pharmacies.
One piece can't be moved without causing ripple
effects to all the others. And for one of those pieces,
pharmacies, the ripple effects have turned into a
crashing wave. >> We have been in business
for over 70 years. >> The local drugstore was,
once upon a time, a staple in communities across the
country. >> We look at.
>> Our financials every month, and it's scary. And
we think about how how long can we last?
>> Today, whether it's the local drugstore or a chain
pharmacy, the brick and mortar presence is dying.
>> The feasibility. >> Of having an independent
pharmacy is becoming very challenging.
>> Nicole Schreiner is the CEO of Streu's Pharmacy in
Green Bay and board president of the Pharmacy
Society of Wisconsin. >> We get up in the morning
because we want to truly help serve our patients.
>> Alongside her commitment to the mission, she takes
on her new dual roles in one of the most challenging
times for pharmacies. As millions of Americans now
live in pharmacy deserts. From 2010 to 2021, 30% of
drugstores in the US closed in 2024 alone. Some
estimates show 2800 pharmacies closed, half of
them being small or mid-sized businesses. And
in 2025, even the big chains like Walgreens
closed hundreds of locations.
>> It's creating an access issue for patients we
oftentimes talk about in rural areas, you know,
patients having to travel, you know, perhaps 20 miles
to find a pharmacy that would be able to provide
their medications. And but we're having that even in
urban city areas. >> For some, a visit to the
pharmacy is a quick step, picking up 1 or 2
prescriptions. But for many patients, it's much more
than that. >> Your pharmacist a lot of
times will be a critical component of your medical
care team. >> Senate President Mary
Felzkowski authored legislation trying to help
local pharmacies keep their doors open.
>> We saw our small, independent pharmacy
starting to go out of business in rural Wisconsin.
>> When it may take months for a patient to get a
clinic visit. Pharmacists say they bridge that gap.
Available for anyone to walk in and ask questions
at any time. And prevention leads to health care
savings. >> For patients with asthma.
We did a study with the Pharmacy Society of
Wisconsin and showed that when they sat down with a
pharmacist on two 30 minute interventions, that they
reduced the number of ER visits, the number of
hospitalizations. These difference in overall
reducing health care dollars spent.
>> Like with most retail stores, it'd be reasonable
to assume that internet sales are putting
pharmacies out of business. And while mail order and
online retailer giants like Amazon do compete with on
site service advocates, diagnose a much deeper and
chronic issue. >> PBMs pharmacy benefit
managers have been around for a very long time.
>> Pharmacy benefit managers, or PBMs, act as
middlemen between drug manufacturers, wholesalers,
providers, insurance companies and pharmacies.
>> And they've monopolized and they've gotten in
between prescribers and the delivery of drugs, driving
up the cost of drugs instead of lowering them.
>> The three largest PBM companies accounted for 80%
of prescription claims last year.
>> They'll claim to negotiate with drug
manufacturers and pharmacies, reduce overall
prescription drug costs. However, despite these
claims, PBMs regularly inflate what patients pay
and force pharmacies to operate a loss.
>> It's become very powerful, and independent
pharmacies like myself have no negotiating power
anymore with these PBMs. >> The impact of PBMs that
PBMs are having on rural pharmacies is staggering.
>> The legislation takes aim at a number of their
practices, including not allowing patients to fill
prescriptions at certain pharmacies.
>> PBMs dictate where prescriptions can be filled.
>> Punitive audits against pharmacists who inform
patients of lower cost options.
>> What to charge a patient. >> And perhaps the biggest
of all for pharmacies. >> What they will reimburse
a pharmacy. >> Reimbursing the price of
medications below cost. >> And when they'll pay the
pharmacy. >> Forcing them to take
losses. At a Senate health committee hearing, numerous
local pharmacies attested to this issue.
>> That my pharmacy is currently operating in the
red right now solely due to PBM reimbursement rate.
>> Margins estimated to PBMs have increased by 46%,
and during the same time, margins to pharmacies have
decreased by 47%. >> The contracts have
become basically take it or leave it. They've continued
to erode year after year after year. And it's
estimated that independent pharmacies, depending on
your particular location in the country, can have
anywhere from 20 to 40% of their claims are actually
reimbursed below cost. >> But not all health
industry experts agree. >> We believe all these
provisions will be associated with increased
costs to health plans and sponsors.
>> Those in opposition to the bill, such as health
insurers, say it will increase prices for health
plans, employers and patients. The exorbitant
cost of drugs, they say, begins with the drug
manufacturers. >> Instead of taking away
the few tools that health plans and employers use to
address ever increasing drug prices, the
legislature should focus on fixing the market
distortion caused by drug manufacturer pricing
schemes. >> We're going to work very
hard on showing them through data from other
states that have allowed that have the same
legislation, where it's actually lowered the cost
of health care. >> Whatever the cause, the
impact on the patient is real, like the ability to
obtain diabetes medications. >> GLP ones, those some
pharmacies are just choosing not to carry them
because they get reimbursed below their cost.
>> Or having your insurance accepted.
>> Some pharmacies are choosing not to carry
particular plans because of the poor reimbursement.
>> Every day my pharmacy, I witness patients facing
exorbitant co-pays, sometimes exceeding $500
for medications they cannot afford. These patients are
confused, they're overwhelmed, and they're
forced into impossible decisions about their
health. >> For a patient having to
fill prescriptions at multiple pharmacies, the
consequences can cost them their lives.
>> Recently, when interviewing a patient, we
learned that they had a duplicate prescription that
was at another pharmacy from a different doctor. If
they had gone home and taken both, they would have
needed emergency care and it could have been fatal.
>> From the extremes of the pandemic to the work they
do every day, independent pharmacists say their
commitment is to their community.
>> What happens if PBMs continue to drive us out of
business? Who will step up during this crisis? Who's
going to be doing seven day a week testing? Who's going
to deliver meds late at night for a hospice patient
who's going to get a call at 2 a.m. I just got that
last week. It won't be a mail order pharmacy in
another state that's doing that.
>> Being able to provide that service to patients,
and to be part of making sure that they are taken
care of, is really what we want to ultimately do.
>> Advancements in modern medicine have created some
amazing treatments to manage or even cure
diseases and conditions once thought untreatable,
but these advancements come with a huge price tag. In
our next story, we look at an increasingly common
mechanism used by health plans to help offset the
rising costs of these miracle medicines, where
financial aid is diverted away from patients who need
it most. >> I couldn't believe what
I found out when this happened. I couldn't
believe it was legal. >> Tamra Varebrook lives
with painful, chronic conditions. She can still
live her life as long as she has her medication.
>> I changed jobs and started over with a new
co-pay and new deductible. That's when when this hit
me, I wasn't getting my medications. And, you know,
I thought, what? Why aren't you sending them? They're
like, well, you have a $6,000 balance. I had my
first experience with copay accumulators. I had never
even heard of him. >> A copay accumulator
sounds like an obscure insurance term. And it is.
>> And I know people don't understand this. If this
doesn't directly affect them.
>> It's also a growing trend among health plans
for Tamara's conditions. Her medication costs her
the equivalent of buying a car every year.
>> Right now, I take the entire prior year to save
up, to try to have enough to buy my drug in January.
It's ridiculously expensive, but it's the thing that
makes me be able to walk in my arms, bend and, you know,
keep, you know, my joints moving so I don't end up in
a wheelchair. >> To afford her drugs. Her
doctors told her about patient assistance programs.
It's often the drug manufacturer helping the
patient to afford their own high priced medication.
This kind of financial assistance is referred to
as a copay, coupon, or copay card.
>> That were meant to help the patients get their
drugs and pay down their deductibles, pay down their,
you know, on their out-of-pocket maximums.
>> Here's how they work A patient is prescribed an
expensive name brand drug that doesn't have a generic.
Their health plan has a high deductible and
out-of-pocket maximum, which they must meet before
the plan will cover the drug. The copay card
provides the financial assistance to cover the
patient's deductible and out-of-pocket max. When
those are met, the health plan kicks in and covers
all or part of the cost that remains of the drug,
potentially saving the patient thousands of
dollars. >> It was a life changer. I
was, you know, pretty low income at the time when
when a lot of my medical issues started and I would
never have been able to afford these medications.
>> One day, she realized she wasn't receiving the
life changing assistance or her medication. Tamara was
blindsided. >> They weren't shipping it.
And so I kept calling and saying, well, why isn't
this shipping? They're like, you owe $6,000. And I'm
like, what do you mean I owe $6,000?
>> The drug company had provided the copay card.
>> I've already gotten this. And you know, it should be.
My deductible at least should be covered.
>> The problem was the financial assistance no
longer covered her. The pharmacy told her.
>> If you don't pay for it in full, you are not
getting your medication. And I went months without.
>> Tamara had recently started a new job where her
health plan contained a copay accumulator.
>> I spent countless hours on phone calls. I can't
even tell you how upsetting it was.
>> The accumulator is a relatively new tool used by
health plans and pharmacy benefit managers. A copay
accumulator takes the financial assistance, the
copay card, and only applies it to the total
cost of the drug. It does not count towards the
patient's deductible or out-of-pocket maximum. In
other words, the patient no longer saves money. The
health plan saves money by taking the full amount of
copay card and still collecting the deductible
and out-of-pocket maximum paid by the patient.
>> This is a very scary moment for me, just knowing
a lot of other people with Miss.
>> Jim Turk has multiple sclerosis, or Ms. a disease
that attacks the body's nerves. There's no cure,
only treatment. >> If you're on drugs. I
mean, that's your lifeline. That's something that's
preventing that, or at least slowing that down
significantly from happening. So they don't
have as much stress in their life either. And the
stress in their life can also exacerbate the
symptoms. So it's just this vicious circle.
>> He's an advocate for people with Ms. Knowing the
struggles firsthand. >> I look at a list to see
what all the drugs cost. Ocrevus the one that I was
on last, which was actually the newer drug, was one of
the cheaper drugs. And that was, I think, 70 or $80,000
a year, which I can't afford. I'm on disability.
>> Having been the recipient of copay cards,
he stresses their importance for patients to
survive. >> You have to make the
choice between paying for your drugs that might be a
lifesaver or paying for groceries, and obviously
there's no choice there or paying for rent. And that's
really what it comes down to.
>> And a copay accumulator. >> They're essentially
designed to be confusing. >> Makes that choice even
harder. Well, in 21 states it is
now illegal, but not Wisconsin.
>> Other states have outlawed accumulators, and
a bill currently in Wisconsin's legislature
would as well. At a hearing, health plans and pharmacy
benefit managers spoke in opposition.
>> This bill does nothing to control the soaring
prices of prescription drugs set by pharmaceutical
manufacturers, but instead rewards drug makers for
steering patients towards more expensive brand name
drugs. >> They say copay cards are
a ploy by pharmaceutical companies to get patients
to take expensive name brand drugs.
>> Rather than benefiting those in financial need. A
lot of these coupons from manufacturers act as an
inducement to move to higher cost products.
>> Supporters of accumulators say they lower
costs by saving health plans money not just one
patient. But others refuted these claims.
>> Nearly all copay assistance programs from
manufacturers are for drugs with no generic
alternatives. Co-pay assistance increases
medication adherence. Studies have found that
morbidity and mortality associated with poor
medication adherence cost the US healthcare system
$528 billion. Annual non-adherence can lead to
treatment failure, resulting in poor outcomes
such as worsening of condition, admission to the
emergency room and hospitalization, and
requiring new prescriptions to treat subsequent
comorbidities, which results in higher costs to
the entire healthcare system. That is what will
increase premiums. >> This rings true for
Tamara. >> The specific drug is not
the only cost of chronic disease. Chronic disease
causes people to miss work, end up in emergency rooms,
hospital bills. >> Drug manufacturers do
not like accumulators because the assistance
doesn't go to help the patient. She fears they may
end up not providing the assistance at all.
>> I'm afraid that the pharmaceutical companies
stop the programs because they're not helping the
patients, and that would be a real nightmare because
then everybody would suffer. This is where we're at in
Wisconsin now, and I feel bad for everybody who has a
child or, you know, any adult that runs into these
issues because most people are not prepared with that
kind of money, and you aren't going to get your
medication. >> There has been some
movement in the state's legislature to address
things like copay accumulators, open
formularies and pharmacy access. We're joined by
someone on the front lines of this work. Rob Gunderman,
president and CEO of the Coalition of Wisconsin
Aging and Health Groups. And thanks for being here.
>> Thanks for having me. >> So tell me a little bit
about how you got started in all of this.
>> Sure. Well, I started getting calls from patients
who were trying to get their medications. They'd
go to the pharmacy counter, and they were being told
that it would be thousands of dollars to get the
medication that they're used to paying 30, 40, $50,
whatever their copay was. And they were learning that
a copay accumulator had been applied to their
policy. The one that really struck me was a woman with
a heart condition who needed this heart
medication to live, and she went up like she always
does to buy her medication. They said it was gonna be
$3,800. They didn't have $3,800. And her husband had
to go to the bank and take out a loan so she could get
the medication she needs to live. And I realized, we
have a problem here. And that woman who I've come to
know, she her family is going into debt more and
more every year having to deal with this. So that's
how I got involved in this. >> And as you've been
working on these issues, is this just all too common?
>> You know, when I started out in this, it wasn't that
common. It was I was seeing in a plan here and people
were starting to come to me. Now it's become very common.
It's spreading like wildfire. There are very
few plans left. I don't even know of a plan left in
Wisconsin that doesn't have a copay accumulator other
than the group, the state insurance plan.
>> And there's accumulators, maximizers and those sound
like good things. >> They do. They use catchy
terminology, and they've probably run this through
marketing groups to see what what people like and
what people don't like. But you're exactly right. There
are copay accumulators, they're copay maximizers.
They're all doing essentially the same thing,
but just from a little bit different angle. You know,
when you look at this copay, accumulator piece, it just
to me, this is just so unfair and I don't it's
been difficult for me to understand how this has
been allowed. If you and I went out to dinner and I
paid for your your dinner and the restaurant said,
we've adopted a copay policy where you have to
pay for your your meal and you say, well, Rob already
paid for my meal. Yes. And we appreciate that. And
we're going to keep his money. But you also have to
pay for your meal. You say, this isn't fair. You're
getting paid twice for the meal. This is what the
insurance companies are fine.
you've seen on patients? What does this do to
someone who's making this impossible decision?
>> Well, a couple of things. One, the financial stress
that it's putting families under that just can't
afford this. But the other piece is I've had people
tell me they're not going to take their medication
anymore. I had a friend of mine who has Ms. And he
says if they put one of these copay accumulators on
my policy, I'm going to stop taking my medication.
So you then end up with more problems with their
health. And I don't think that's a cost saving
measure by, you know, taking this money, they may
get some money out of it. But I think in the long run,
the increased health expenses that you're going
to have for people if they stop taking their
medications are going to offset that.
we've seen in these stories, people don't know until
they're so far along that they owe all this extra
money. There's no ability to have a payment plan for
your medications. So you either get it or you don't.
How difficult is it for people to even know that
something like this is on their plan? How much of it
is just poor communication? >> That's a lot of it. It's
very difficult. I've looked at some of these plans, 50,
60 pages, and who's going to read 50 or 60 pages of
fine print? Some of this is a very small it's hard to
read, especially if your eyes aren't so good as mine
aren't anymore. It's hard to spot this little clause
in there that says, and even if you read it, if you
don't know already what a copay accumulator is,
you're not going to understand what they're
saying in there. >> Now, Senate President
Mary Felzkowski has been working on legislation like
this for many years, many sessions. What are the
concerns that state lawmakers have had making
it so difficult to move this forward?
>> So I think the the one thing that's really held us
up with state law, well, a couple of arguments that
the insurers have made. One is that this will drive
patients to more expensive brand name medications. We
know 98% of the medications in this group, these
expensive medications there isn't a generic for. But
Senator Felzkowski put in language in the bill saying
that this only applies to medications for which there
is not a generic equivalent. So that's off the table.
There's still making that argument, though. The other
argument that we're hearing is that it will drive up
insurance premiums. But there's studies that have
been done looking at states that have already passed
this type of legislation where the premiums haven't
increased. And conversely, studies have looked at
states that haven't passed this legislation and
premiums aren't lower there, like in Wisconsin, our
premiums aren't lower where we don't have that.
>> Where does it currently stand? And what, if
anything, has changed throughout this session as
it's gone through committee? >> Sure. Well, we had a
committee hearing, which was the first. This is the
second session that we've tried to run this bill, and
we weren't able to get a vote out of committee last
session. This session, we've got a 5 to 0 vote. So
the entire committee voted in favor of passing this
out in the Senate. And we expect that to come up to
the onto the floor at some point in January. We just
don't know when. And so, you know, there's a
definite shift here where the momentum has shifted. I
think there are 40 co-sponsors on the bill.
But I think I think the votes are there to pass the
bill. If we can get the votes.
next story, that he didn't know that the formulary had
changed. And that's something that's been a
point of contention in the legislation. Has that
changed as it's gone through committee?
>> Yeah. So the insurers wanted to be able to change
the formulary throughout the year. And right now
they could only change it during the window and
people can change plans. And I said we didn't have a
problem with that. As long as they weren't able to
force the patient to change their medication mid-year.
So I think it's actually a benefit to patients,
because if you're going to to make a formulary change,
tell them in June or July, give them as much time as
possible to figure out what they're going to do and
find a new plan that will cover whatever the
medication is that they're taking that is going to be
leaving your formulary. So I think I don't see a
downside to that. >> Overall, premiums are
going up. If people feel like they're not properly
covered under a plan that they're paying a lot of
money for every month, do you think patients will
just end up foregoing a health plan altogether?
>> That's our that's our concern, our worry. I think
there are people who they're going to look at
this and say, I'm paying so much out of pocket anyway.
I'm not ever using the insurance, so what's the
point of having it? And then when they have
something serious happen, then it's more problems.
And it's not like someone isn't paying for that.
>> Now we just saw Congress go through the longest
government shutdown in history over these enhanced
tax credits, and we're still seeing premiums go up
all around. How much of this is kind of reaching a
turning point as healthcare premiums, costs are all
going up and there doesn't seem to be an end in sight.
>> We're getting to the point where something has
to happen and we can't. My insurance went up almost
25% this year. We can't have 25% annual increases
in our health costs, just as Americans. We can't
afford it. So we have to figure something out. And I
don't know what that answer is. I mean, people, smarter
people than me, have been trying to figure this out
for a very long time. But we're getting to the point
where we have to. This isn't an option anymore. We
can't afford to keep going the way that we're going.
And for a lot of families without the the Affordable
Care Act plans being available to them, I think
we have a lot of people who are just not going to be
insured. much for joining us.
>> Thanks. >> As we've seen, most
patients don't get the option of a payment plan
for these costly prescriptions. You either
pay up front or you don't receive treatment. In all
of these stories, complex diagnoses, convoluted
health plans, decreasing access, and steep prices
are overwhelming patients with impossible decisions.
But they're not always alone. Patient advocates
are stepping in, using their knowledge of the
system and doing what they can to make sure patients
are getting the treatment they need.
>> How far are they away from bankruptcy?
>> They pretty much billed me $83,000 per infusion.
>> They are as far away as a chronic diagnosis.
>> The right medication can be expensive, but critical
for chronic illness patients. Advocates like
Nilsa Cruz know this all too well.
>> The reason why I became a patient advocate is it
was actually baptism by fire.
>> When she started as administrator for the
Milwaukee Rheumatology Center more than 20 years
ago, she also became the clinic's de facto patient
advocate. >> Patients coming back or
calling back because their medication is not covered.
Perhaps they cannot afford the out-of-pocket expense.
After going through a very tedious process of a prior
authorization, only to come and find out that it's
unaffordable. Delays and denials some patients
suffering, too, because the patients really don't
understand what's going on with their benefits.
>> Today, she's known and even sought out for her
ability to help patients navigate complex health
benefits. >> I come to this clinic
because of their patient advocate.
>> Janelle Zeihen came to Cruz when her last clinic
didn't know how to help her navigate her health plan
benefits, so she came to this rheumatology clinic
for her Crohn's, a type of inflammatory bowel disease.
>> It starts with like a like somebody sucker
punching me right up into my chest. And then and
that's pretty much the inflammation starting.
>> Crohn's disease can be debilitating and life
threatening, especially when not treated.
>> It is extremely painful. I can barely walk when it
happens. Being on the entyvio that I get, it's
been life changing. >> When she got a new job,
her entyvio was no longer covered. Under her new plan.
>> They specifically carved out all tier four drugs
which are chemos, HIV drugs and any infusions.
>> Tier four drugs are also referred to as specialty
drugs. >> When you have a complex
condition, what you get slapped with is this
penalty called specialty drug, because a pharmacist
might have to monitor or look at something more
closely, which they should be doing for every drug
anyway. >> And Lewandowski also
knows how difficult but essential it is finding the
right medication. >> Accessing it because of
insurance barriers and other issues can also be as
much or more challenging. >> She has her own
experience with autoimmune disorders and health care.
>> You're really in survival mode and you're
just trying to figure out, like, do I go to work and
make money? Or do I deal with this disease.
>> Part of her expertise. >> I am also a patient.
>> Comes from being a patient, and she uses that
knowledge to help others better understand these
complex systems. >> We have these market
distortions, right. We have, depending on what your
diagnosis is, who your insurance company is, two
patients walking in with even the same diagnosis are
going to be charged completely different prices.
And I think that's really problematic.
>> I've seen plan documents where they're limiting, you
know, drug expenditure, like anything over 100,000
is out. I've seen plan documents where cancer
drugs are not covered, where none of none of the
rheumatology drugs are covered.
>> Often patients that can't afford an expensive
drug qualify for patient assistance programs through
the pharmaceutical company. But these programs are
usually for people with little to no health
coverage. >> I am insured at $400
premium cost. >> Janelle was covered by
her employer's self-funded health plan, even though it
specifically carved out her medication, leaving her to
cover the cost. >> Big time. Pharma is
starting to say, no, it's not happening. Companies
are saying these funds are patients who are literally
uninsured. Pharma will deny that free drug for the
patient because benefits have been carved out and
made non-essential by the plan. And you're literally
functionally uninsured. >> Having coverage, at
least on paper, disqualified her for
patient financial assistance. Why? Some drugs
are covered by some health plans and not others is an
opaque and complex system. >> The pricing structure in
this country when it comes to pricing these drugs and
reimbursement, and what actual costs are, is so
messed up. It's so messed up.
>> These carve outs to not cover expensive drugs are
becoming more common among self-funded health plans
like Janelle's, which are governed by different laws
than fully insured health plans.
>> We know health insurance can be complicated and
confusing. >> Secretary 'Nathan Houdek
oversees the office of the Commissioner of Insurance.
>> And what makes it even more confusing for people
is that health insurance is really regulated by a
number of different agencies, at both the
federal and state levels. >> This state agency
regulates fully insured health plans. If a patient
wants to challenge an insurance denial, they come
here. don't understand, if they
have employer sponsored coverage, is whether that's
fully insured coverage or whether that is self-funded
coverage. >> Self-funded coverage is
regulated by federal law. But you can still start
with this office. >> If someone has health
insurance coverage through a self-funded plan, then we
will kind of hand them off to we like to refer to as
kind of a warm handoff to the Department of Labor,
because it's the federal Department of Labor that
actually regulates self-funded plans.
>> Because of this, no matter what kind of plan,
Secretary Houdek recommends reaching out.
>> Unfortunately, studies have shown that of all the
coverage and claim denials, only a small percentage are
appealed. And that's really because people don't know
what their rights are. People don't know that
there is a place where they can turn to answer
questions, to be a resource, and our office is here to
help with that. >> Fully insured versus
self-funded plans. Health experts say they both have
their own issues. The rules are just different.
>> I have a lot of empathy for employers, right? I
mean, if you are a manufacturer here in
Wisconsin, you're making cheese, you're making steel
parts, whatever. Making yachts, it really doesn't
matter. You are not a health care expert.
>> For Janelle, her case was even more complicated
than most. But Cruz was with her every step of the
way. >> First of the year and go
through. >> I remember that
conversation. Janelle, you settle on not getting my
treatment this year. >> She helped Janelle file
a complaint with the US Department of Labor.
>> Please keep in mind that for any given patient to
file a complaint with the Department of Labor takes
guts. Because you're now dealing with filing a
complaint against your employer and the fear of
getting fired, even though it's totally illegal.
>> It does make it hard to go into work, because I
also don't know if I'm going to be walking into
work and being walked out because of this for
retaliation or whatnot. >> There are still these
very gray questions of law that honestly make me a
little scared to be a patient and speak up and
encourage people to exercise their legal rights,
which are to speak to their employer and say, hey, this
is a wrong denial. >> During open enrollment,
Janelle decided not to use her employer's health plan,
opting to find a fully insured one on the
marketplace. >> If I were to go through
my employer, I would be right back to where I
started and that would be just that's not even an
option. >> She pays more in
premiums, but her medication is covered.
Without the help of advocates, many patients
are left deciding between their medication or their
savings. >> Can patients do this
themselves? Probably not, because the statistics have
shown that very few patients will take it to
the next level. It's too cumbersome. If you look at
denial letters, the steps are in there, and it's even
cumbersome for me. However, having said that, I'm
constantly looking for ways to make it easier for my
patients to appeal. >> For her patients, Cruz
goes all in to help them find relief.
>> Thanks for everything. >> Relief from the physical
pain of a chronic illness and relief from the
financial pain of treating it. For more on this and
other issues facing Wisconsin, visit our
website at PBS Wisconsin. Org and click on the news
tab. That's our program for tonight. I'm Marissa Wojcik.
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>> Funding for "Here& Now" is provided by the Focus
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