Frederica Freyberg:
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 & Now” producer Marisa Wojcik speaks with advocates helping patients understand their health plans and challenge claim denials.

Nilsa Cruz:
How far are they away from bankruptcy?

Janelle Zeihen:
They pretty much billed me $83,000 per infusion.

Nilsa Cruz:
They are as far away as a chronic diagnosis.

Marisa Wojcik:
The right medication can be expensive, but critical for chronic illness patients. Advocates like Nilsa Cruz know this all too well.

Nilsa Cruz:
The reason why I became a patient advocate is it was actually baptism by fire.

Marisa Wojcik:
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.

Nilsa Cruz:
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.

Marisa Wojcik:
Today, she’s known and even sought out for her ability to help patients navigate complex health benefits.

Janelle Zeihen:
I come to this clinic because of their patient advocate.

Marisa Wojcik:
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.

Janelle Zeihen:
It starts with, like, a — like somebody is sucker punching me right up into my chest. And then — and that’s pretty much the inflammation starting.

Marisa Wojcik:
Crohn’s disease can be debilitating and life threatening, especially when not treated.

Janelle Zeihen:
It is extremely painful. I can barely walk when it happens. Being on the Entyvio that I get, it’s been life changing.

Marisa Wojcik:
When she got a new job, her Entyvio was no longer covered under her new plan.

Janelle Zeihen:
They specifically carved out all tier four drugs, which are chemo’s, HIV drugs and any infusions.

Marisa Wojcik:
Tier four drugs are also referred to as specialty drugs.

Ann Lewandowski:
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.

Marisa Wojcik:
Ann Lewandowski also knows how difficult but essential it is finding the right medication.

Ann Lewandowski:
Accessing it because of insurance barriers and other issues can also be as much or more challenging.

Marisa Wojcik:
She has her own experience with autoimmune disorders and healthcare.

Ann Lewandowski:
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?

Marisa Wojcik:
Part of her expertise…

Ann Lewandowski:
I am also a patient.

Marisa Wojcik:
…comes from being a patient, and she uses that knowledge to help others better understand these complex systems.

Ann Lewandowski:
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.

Nilsa Cruz:
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.

Marisa Wojcik:
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.

Janelle Zeihen:
I am insured at $400 premium cost.

Marisa Wojcik:
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.

Nilsa Cruz:
Big time pharma is starting to say no, it’s not happening. Companies are saying these funds are for 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.

Marisa Wojcik:
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.

Nilsa Cruz:
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.

Marisa Wojcik:
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.

Nathan Houdek:
We know health insurance can be complicated and confusing.

Marisa Wojcik:
Secretary Nathan Houdek oversees the Office of the Commissioner of Insurance.

Nathan Houdek:
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.

Marisa Wojcik:
This state agency regulates fully insured health plans. If a patient wants to challenge an insurance denial, they come here.

Nathan Houdek:
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.

Marisa Wojcik:
Self-funded coverage is regulated by federal law, but you can still start with this office.

Nathan Houdek:
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.

Marisa Wojcik:
Because of this, no matter what kind of plan, Secretary Houdek recommends reaching out.

Nathan Houdek:
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.

Marisa Wojcik:
Fully insured versus self-funded plans. Health experts say they both have their own issues. The rules are just different.

Ann Lewandowski:
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.

Marisa Wojcik:
For Janelle, her case was even more complicated than most. But Cruz was with her every step of the way.

Janelle Zeihen:
First of the year …

Nilsa Cruz:
I remember that conversation, Janelle. You literally told me, “I’m just settle on not getting my treatment this year.”

Marisa Wojcik:
She helped Janelle file a complaint with the U.S. Department of Labor.

Nilsa Cruz:
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.

Janelle Zeihen:
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.

Ann Lewandowski:
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.”

Marisa Wojcik:
During open enrollment, Janelle decided not to use her employer’s health plan, opting to find a fully insured one on the marketplace.

Janelle Zeihen:
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.

Marisa Wojcik:
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.

Nilsa Cruz:
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.

Marisa Wojcik:
For her patients, Cruz goes all in to help them find relief.

Woman:
Thanks for everything.

Marisa Wojcik:
Relief from the physical pain of a chronic illness and relief from the financial pain of treating it. Reporting from Milwaukee, I’m Marisa Wojcik for “Here & Now.”