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>> All right. Well, Doctor
James Conway, thanks very

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much.
>> Thanks for having me.

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>> On health care. We
continue our coverage on

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prescription drugs. Over the
last month, Rx Uncovered has

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looked at why patient costs
for drugs are going up and

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coverage for drugs is going
down. In our final story,

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patients are not alone as
they try to afford their

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specialty drugs and navigate
complex health insurance

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policies. Here and now,
producer Marissa Wojcik

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speaks with advocates
helping patients understand

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their health plans and
challenge claim denials.

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>> How far are they away
from bankruptcy?

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>> They pretty much billed
me $83,000 per infusion.

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>> They are as far away as a
chronic diagnosis.

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>> The right medication can
be expensive, but critical

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for chronic illness
patients. Advocates like

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Nilsa Cruz know this all too
well.

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>> The reason why I became a
patient advocate is it was

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actually baptism by fire.
>> When she started as

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administrator for the
Milwaukee Rheumatology

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Center, more than 20 years
ago, she also became the

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clinic's de facto patient
advocate.

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>> Patients coming back or
calling back because their

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medication is not covered,
perhaps they cannot afford

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the out-of-pocket expense.
After going through a very

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tedious process of a prior
authorization, only to come

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and find out that it's
unaffordable, delays and

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denials. Some patients
suffering, too. Because the

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patients really don't
understand what's going on

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with their benefits.
>> Today, she's known and

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even sought out for her
ability to help patients

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navigate complex health
benefits.

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>> I come to this clinic
because of their patient

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advocate.
>> Janelle Zeihen came to

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Cruz when her last clinic
didn't know how to help her

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navigate her health plan
benefits. So she came to

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this rheumatology clinic for
her Crohn's, a type of

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inflammatory bowel disease.
>> It starts with like a

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like somebody sucker
punching me right up into my

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chest. And then. And that's
pretty much the inflammation

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starting.
>> Crohn's disease can be

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debilitating and life
threatening, especially when

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not treated.
>> It is extremely painful.

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I can barely walk when it
happens. Being on the

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entyvio that I get, it's
been life changing.

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>> When she got a new job,
her entyvio was no longer

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covered under her new plan.
>> They specifically carved

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out all tier four drugs,
which are chemo's HIV drugs

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and any infusions.
>> Tier four drugs are also

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referred to as specialty
drugs.

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>> When you have a complex
condition, what you get

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slapped with is this penalty
called specialty drug

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because a pharmacist might
have to monitor or look at

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something more closely,
which they should be doing

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for every drug anyway.
>> Ann Lewandowski also

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knows how difficult but
essential it is finding the

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right medication.
>> Accessing it because of

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insurance barriers and other
issues can also be as much

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or more challenging.
>> She has her own

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experience with autoimmune
disorders and healthcare.

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>> You're really in survival
mode and you're just trying

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

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do I deal with this disease?
>> Part of her expertise.

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>> I am also a patient.
>> Comes from being a

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patient, and she uses that
knowledge to help others

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better understand these
complex systems.

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>> We have these market
distortions, right? We have,

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depending on what your
diagnosis is, who your

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insurance company is to
patients walking in with

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even the same diagnosis are
going to be charged

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completely different prices.
And I think that's really

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problematic.
>> I've seen plan documents

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where they're limiting, you
know, drug expenditure, like

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anything over 100,000 is
out. I've seen plan

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documents where cancer drugs
are not covered, where none

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of none of the rheumatology
drugs are covered.

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>> Often patients that can't
afford an expensive drug

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qualify for patient
assistance programs through

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the pharmaceutical company.
But these programs are

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usually for people with
little to no health

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coverage.
>> I am insured at $400

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premium cost.
>> Janelle was covered by

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her employer's self-funded
health plan, even though

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it's specifically carved out
her medication, leaving her

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to cover the cost.
>> Big time pharma is

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starting to say no, it's not
happening. Companies are

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saying these funds are
patients who are literally

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uninsured. Pharma will deny
that free drug for the

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patient because benefits
have been carved out and

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made non-essential by the
plan. And you're literally

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functionally uninsured.
>> Having coverage, at least

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on paper, disqualified her
for patient financial

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assistance. Why some drugs
are covered by some health

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plans and not others is an
opaque and complex system.

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>> The pricing structure in
this country when it comes

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to pricing these drugs and
reimbursement, and what

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actual costs are, is so
messed up. It's so messed

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up.
>> These carve outs to not

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cover expensive drugs are
becoming more common among

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self-funded health plans
like Janelle's, which are

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governed by different laws
than fully insured health

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plans.
>> We know health insurance

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can be complicated and
confusing.

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>> Secretary Nathan Houdek
oversees the office of the

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Commissioner of Insurance.
>> And what makes it even

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more confusing for people is
that health insurance is

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really regulated by a number
of different agencies at

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both the federal and state
levels.

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>> This state agency
regulates fully insured

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health plans. If a patient
wants to challenge an

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insurance denial, they come
here.

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don't understand if they
have employer sponsored

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coverage is whether that's
fully insured coverage or

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whether that is self-funded
coverage.

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>> Self-funded coverage is
regulated by federal law,

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but you can still start with
this office.

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>> If someone has health
insurance coverage through a

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self-funded plan, then we
will kind of hand them off

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to we like to refer to as
kind of a warm handoff to

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the Department of Labor,
because it's the federal

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Department of Labor that
actually regulates

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self-funded plans.
>> Because of this, no

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matter what kind of plan,
Secretary Houdek recommends

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reaching out.
>> Unfortunately, studies

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have shown that of all the
coverage and claim denials,

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only a small percentage are
appealed. And that's really

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because people don't know
what their rights are.

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People don't know that there
is a place where they can

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turn to answer questions, to
be a resource, and our

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office is here to help with
that.

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>> Fully insured versus
self-funded plans. Health

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experts say they both have
their own issues. The rules

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are just different.
>> I have a lot of empathy

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for employers, right? I
mean, if you are a

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manufacturer here in
Wisconsin. You're making

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cheese. You're making steel
parts, whatever. Making

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yachts. It really doesn't
matter. You are not a health

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care expert.
>> For Janelle, her case was

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even more complicated than
most. But Cruz was with her

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every step of the way.
>> First of the year go

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through.
conversation, Janelle, you

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literally told me I'm just
settle on not getting my

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treatment this year.
>> She helped Janelle file a

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complaint with the US
Department of Labor.

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>> Please keep in mind that
for any given patient to

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file a complaint with the
Department of Labor takes

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guts because you're now
dealing with filing a

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complaint against your
employer. And the fear of

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getting fired, even though
it's totally illegal.

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>> It does make it hard to
go into work, because I also

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don't know if I'm going to
be walking into work and

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being walked out because of
this. And for retaliation or

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whatnot.
>> There are still these

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very gray questions of law
that honestly make me a

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little scared to be a
patient and speak up and

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encourage people to exercise
their legal rights, which

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are to speak to their
employer and say, hey, this

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is a wrong denial.
>> During open enrollment,

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Janelle decided not to use
her employer's health plan,

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opting to find a fully
insured one on the

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marketplace.
my employer, I would be

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right back to where I would
start and that would be just

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that's not even an option.
>> She pays more in

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premiums, but her medication
is covered without the help

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of advocates. Many patients
are left deciding between

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their medication or their
savings.

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>> Can patients do this
themselves? Probably not,

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because the statistics have
shown that very few patients

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will take it to the next
level. It's too cumbersome.

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If you look at denial
letters, the steps are in

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there and it's Yvonne
cumbersome for me. However,

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having said that, I'm
constantly looking for ways

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to make it easier for my
patients to appeal.

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>> For her patients. Cruz
goes all in to help them

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find relief.
>> Thanks for everything.

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>> Relief from the physical
pain of a chronic illness

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and relief from the
financial pain of treating

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it. Reporting from
it. Reporting from