How far are they away
from bankruptcy?
They pretty much billed me eighty
three thousand dollars 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 twenty years
ago, she also became the clinic's
de facto patient advocate.
Yeah.
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 is unaffordable,
delays and denials.
Some patients suffering too, 'cause
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 Zion 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.
Starts with like a like somebody's
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 In Tivio
that I get life changing.
She got a new job, her Antivia
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.
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.
Anne 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
healthcare.
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 gonna be charged completely
different prices.
And I think that's really
problematic.
I've seen planned documents
where they're limiting,
you know, drug expenditure
like anything over a hundred
thousand is out.
I've seen planned 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.
Time pharma is starting to say
no, it's not happening.
Companies are saying these
funds are patient 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
Functional.
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.
Is 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 Hodek
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.
And what a lot of people 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 Hodick
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 healthcare expert.
For Janelle, her case was
even more complicated than most,
but Cruz was with her every step
of the way.
I remember that conversation,
Yannel. You literally told
me, I'm
just settled 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 'cause I also don't know if I'm
going to be walking into work and
being walked out because of this
and 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 was 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 these 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.
Yeah.
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.
For her patients, Cruz goes
all in to help them find relief.
Yeah, thanks for everything.
Relief from the physical pain of a
chronic illness and relief
from the financial pain of treating
it. Reporting from Milwaukee,
I'm Marissa Wochik, for
here and now.
Solamente ahí.