Julie Wernau (4:22)

What insurers say is it's their job to try to rein in the costs of our very expensive healthcare system and sort of toe the line of science and research. Even if that means that particular treatment or something that's a little new could have saved that person's life. It's not about the individual.

Jessica Mendoza (4:47)

But from the perspective of someone hoping to get a procedure approved and their loved ones, the situation can feel very personal. Ed Stratton's health problems started back in 2019, when he was diagnosed with colorectal cancer. To treat that, he underwent surgery and chemotherapy. Here's his daughter Erin, again.

Erin Stratton (5:07)

He responded very well to chemotherapy. He was relatively, I'll say, healthy or feeling well the majority of the time. Could still play golf, could still work.

Jessica Mendoza (5:17)

Then in the late summer of 2023, Ed started feeling sick again. It was his liver. Colorectal cancer often spreads to the liver. So his doctors started treatment. But that caused other problems.

Erin Stratton (5:31)

He was very tired. He would get the chills a lot, get a lot of fevers, and his bile ducts were narrowing because of the scar tissue and things on his liver. And so they had to put in a bunch of stents. And the stents only last, well, only lasted him maybe a couple weeks. So they had to keep repeating this process. And during that time is when he got a really bad infection.

Jessica Mendoza (5:59)

Ed's doctors determined that he couldn't survive at the rate he was going to. That's when they turned to emerging research that showed the best course of action for patients like Ed was a liver transplant. They did an extensive assessment that showed he was the right candidate for this kind of surgery. And then the doctor submitted the paperwork to the insurance company. It was in May that Anthem rejected Ed's claim. It sent him a letter saying his plan didn't cover care that was, quote, unquote, investigational and not medically necessary. So, Julie, who would have made that recommendation?

Julie Wernau (6:39)

Largely, we're talking about doctors and nurses.

Jessica Mendoza (6:41)

Okay.

Julie Wernau (6:42)

So these insurance companies have staff that are actually clinicians, and their job is to look all the documentation over and then compare it against these insurance policies within these insurance companies. Their only job is to really, like, say, does this jibe with our policy? And if it doesn't, then it gets denied.

Jessica Mendoza (7:04)

So what kind of explanation do patients typically get when they get a denial?

Julie Wernau (7:11)

Very little explanation. I saw denial letters where essentially it was, you know, a line that said, this is an unproven treatment. I saw denial letters where it referred to some kind of issue with the drugs they needed. Often, you know, it doesn't even refer back to any backup information to help you understand why the denial wasn't in line with their policies or in line with the accepted science.

Jessica Mendoza (7:52)

Meanwhile, Ed was declining further. A big problem was that his liver kept getting infected. And timing is critical when it comes to transplants. You can't be so sick you won't recover from the surgery. If you get that sick, then you could be taken off the recipients list. Here's his daughter Erin, again.

Erin Stratton (8:10)

He went off the IV antibiotics at one point during the appeal process, got an incredibly bad infection, was in the hospital for, I think, like, two weeks. They had to put him back on IV antibiotics. So it was like nothing was ever stable. Stable.

Jessica Mendoza (8:26)

Was there any concern that, you know, your dad was going to run out of time?

Erin Stratton (8:31)

Yes, that was. I think that was the scariest part to me, knowing that it's happened before. Yeah, it's happened before to other people. Right. Where the overturn of the denial didn't come in time. And so what I was the most nervous about is dad giving up hope and that driving him to get sicker and then push us off the list.

Jessica Mendoza (8:57)

Ed's medical team disagreed with Anthem's denial because the doctors were looking at emerging research that said a transplant could work. So they appealed, and as part of that process, they submitted additional information to the insurance company. I asked Julie about how that appeals process works.

Julie Wernau (9:15)

A lot of times that might involve some studies showing that the treatment is warranted, maybe some history about the patient. And that usually goes to sort of like a higher level within the insurance company. If that gets denied, then often the next step is in a lot of states, you go to this sort of outside third party that reviews these insurance claims, and then if that doesn't work, there's actually an appeal process. That a patient can go through inside that third party system. It's almost like a court case.

Jessica Mendoza (9:53)

Ultimately, Ed's medical team filed several rounds of appeals to Anthem. The information they submitted included those recent studies showing people like Ed did well after a transplant. In mid June, Ed got the final decision. This time it was from that third party organization that Anthem had selected to review his case. It was yet another no. We asked Anthem about that final denial. It said that the rejection was the third party reviewer's decision. And Anthem said that for people with Ed's diagnosis, quote, the clinical evidence available at that time did not support liver transplants. But that final coverage denial only made Erin fight harder to find another way.

Erin Stratton (10:40)

I was throwing every Hail Mary what she did.

Jessica Mendoza (10:45)

That's after the break.

Waris Bokari (10:59)

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Jessica Mendoza (11:34)

Erin Stratton wanted to understand why the insurance company kept denying her dad's treatment. She dug into the studies her father's doctors were citing and also looked at how Anthem justified its denial. In the company's last two rejection letters, it said, quote, medical studies do not show that this surgery will improve your short or long term health. Erin also learned more about the doctors who had reviewed her dad's case.

Erin Stratton (12:01)

One was a family medicine practitioner that had reviewed the case. And I was like, hey, nothing against family medicine. We all need it. I just feel like maybe you don't have the requisite experience to be able to review and understand the medical necessity of a case. That's pretty complex.

Jessica Mendoza (12:21)

Anthem pointed out that while its second round reviewer was a family medicine doctor, the company's initial reviewer was an oncologist. Here's our colleague Julie again.

Julie Wernau (12:32)

The way the system is supposed to work is that if your doctor has, you know, a peer to peer, as they call it, conversation, then that person legitimately is a peer, Right? This is like if it's an oncologist, they're talking to someone who specializes in oncology. In reality, though, that is not always how it works. And sometimes, you know, one person who is a specialist ends up speaking to a generalist or sometimes a specialist whose Specialty does not even align with the case that they're looking at.

Jessica Mendoza (13:01)

In the process of appealing, is there any way to know, like, who or what kind of doctor reviewed your claim?

Julie Wernau (13:07)

Do a lot of people know who denied their claim? Absolutely not.

Jessica Mendoza (13:12)

That seems pretty complicated to navigate.

Julie Wernau (13:14)

It can be a really dizzying experience trying to figure that out.

Jessica Mendoza (13:18)

For Erin, dealing with such a dizzying experience, she wanted to find other people who could help her decide what to do next. At the time, she worked at a communications company that helped healthcare systems like hospitals. So she started making calls to her contacts in the industry. She called nonprofits and healthcare agencies. Anyone she could think of that might be able to help her. Detective work led her to a company that was still in the process of starting up. Called Claimable. Its founder, Waris Bokari, decided to help Erin in her fight the plan to take her father's story public. Together, they produced what they called a public appeal. In it, they laid out Ed's medical history, along with research supporting the treatment his doctors recommended. Essentially, it was an open letter to Anthem, making the case for why it should pay for her father's transplant. And it took a lot of time. While she worked, Erin's mom would come by with food and take her dog for walks.

Erin Stratton (14:24)

I would start working on it at night, and all of a sudden it would be midnight, and I would be.

Jessica Mendoza (14:28)

Like, oh, well, how much time and all do you think you spent on this? I mean, you were still working. You still have your day job.

Erin Stratton (14:34)

I was still working. Uh, I would say 100 hours, maybe. Calling, researching, emailing, drafting an email, which is, like, much harder, although a little bit less hard when you're like, oh, if I don't send it, my dad might die. Um. Right.

Jessica Mendoza (14:51)

Yeah. Ed reviewed everything, and together, he and Aaron made his case. In the appeal, which was 60 pages long. In it, Ed talks about how helpless he felt. He says the various doctors who denied his claim made up a, quote, anonymous panel, who are deciding between my living and dying. Ed sent his public appeal to the CEO and board of directors of Elevance, the parent company of Anthem, in early July. He also sent it to the media, the governor of Missouri, and the secretary of the federal Department of Health and Human Services. Because Ed had exhausted all his appeals with Anthem, the company had no obligation to respond. So Aaron, Ed, and their family just had to wait and hope. And then in mid July, Ed got an email saying the insurance company had overturned its denial. Anthem would pay for the transplant.

Julie Wernau (15:52)

Hey, dad.

Ed Stratton (15:52)

Hi, Erin. How are you doing?

Waris Bokari (15:54)

How do you Feel today?

Ed Stratton (15:56)

I feel good, Very good. I mean, I had a busy day. I was, you know, went to Mass, then went and worked out, and then spent the day.

Jessica Mendoza (16:05)

About two months after the approval, Ed was able to get a new liver, and it didn't take long for him to get back out onto the golf course.

Ed Stratton (16:14)

You know, three months from the time I had my surgery, I played my first 18 holes of golf, and now I'm back pretty much to normal.

Erin Stratton (16:22)

I'm shocked you didn't add that you shot in 82.

Jessica Mendoza (16:28)

Ed says he thinks a lot about what Aaron did to help him get the transplant.

Ed Stratton (16:33)

I mean, I. She saved my life.

Erin Stratton (16:37)

Don't start crying now.

Ed Stratton (16:40)

I mean, I mean, I would not be alive today if I didn't get the liver. I certainly wouldn't be living a normal life like I am right now, so. And she fought this thing. I mean, I can't tell you how determined she was and what she did on this thing. I mean, it was really impressive. She fought this thing hard.

Jessica Mendoza (17:09)

Anthem said that this was a rare case. The company said it did not have access to the relevant research before its final denial, and that following a discussion between Ed's transplant surgeon and an Anthem physician, the transplant was approved. So for Ed and his family, it worked out in the end, but only after a tremendous amount of time and effort. Erin says she feels lucky she had the resources to do this work. I asked Julie what the Stratton story tells us about health insurance in the.

Julie Wernau (17:39)

U.S. i mean, you know, the whole world of insurance is sort of making decisions around what should and shouldn't get paid for. In the case of various kinds of disasters, wildfires, car crashes. I think it feels different to people when you're talking about their health. Right. This is literally life and death. How could it just be about money?

Jessica Mendoza (18:05)

Right. And in the Stratton's case, they were able to get insurance to pay for the liver transplant eventually. But only 1% of people appeal insurance companies decisions. Why do you think that is?

Julie Wernau (18:19)

People, they look at a task before them and they say, is that something I can manage? Is that possible? And most people get overwhelmed before they start when things seem impossible. You know, I'm taking care of an aging parent and trying to get my kid to school and put food on the table. And I don't know anything about scientific studies, and I don't feel comfortable calling my doctor and asking him to write me a letter of recommendation. And I wouldn't even know who to call. So that's why.

Jessica Mendoza (19:07)

That'S all for today, Wednesday, May 14. The Journal is a co production of Spotify and the Wall Street Journal. Additional reporting in this episode by Heather Rogers. Thanks for listening. See you tomorrow.