>> All right. Well, Doctor James Conway, thanks very
much. >> Thanks for having me.
>> On health care. We continue our coverage on
prescription drugs. Over the last month, Rx Uncovered has
looked at why patient costs for drugs are going up and
coverage for drugs is going down. In our final story,
patients are not alone as they try to afford their
specialty drugs and navigate complex health insurance
policies. Here and now, producer Marissa Wojcik
speaks with advocates helping patients understand
their health plans and challenge claim denials.
>> 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 chemo's 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. >> Ann 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.
>> 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 to 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's 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 go
through. conversation, Janelle, you
literally told me I'm just 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. 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. my employer, I would be
right back to where I would start 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 Yvonne 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. Reporting from it. Reporting from