A Life-or-Death Insurance Denial

0:05Ed Stratton is 65. He lives in St. Louis, Missouri, not far from his daughter Erin Stratton. Are you guys close, you and your dad? Oh, yes. Can you tell us a little bit about him? Yeah, absolutely. He has always had the biggest personality. He's really funny, very engaging. He's been in sales his entire career, so he has that very charismatic salesperson personality. He, both my family, my entire family, extended and everything is very big into golf. Ed played golf all the time. He loved being out on the sprawling course. But in late 2023, he started feeling more and more run down. He'd had other health problems in the past.

0:56And now it turned out that his liver was failing. He would just get so sick. He was in and out of the hospital. He was really losing a ton of weight. He was very tired, couldn't eat. Ed's doctors gave him all kinds of treatments until finally there wasn't much else to do. It got to a point where there weren't a lot of options. We had gone through what would traditionally be the remedy for the issue that he's having in his liver. And so it got to this point of like, if you get a new liver in his case, all of the problems go away. His doctor said the best solution would be a liver transplant. But there was a big hurdle Ed needed to clear, getting approval from his insurance company, Anthem Blue Cross and Blue Shield.

1:49But Anthem rejected his claim. We get this denial letter at 4 p.m. Oh, man. I just remember the date. It was my mom's birthday, my mom's 65th birthday, and so we were... Wow, happy birthday. mom. Right? She's an identical twin, so my aunt and my cousin were here and we're prepping for this party. At the time, we didn't really know what was going on, and that was really tough. The news was especially difficult to hear because Ed's doctors had said that if he didn't get a new liver, he would probably die. In a statement, Anthem said it is committed to, quote, providing members with access to safe, effective, and clinically appropriate medical care.

2:29Our decisions are rooted in evidence, not cost.

2:37Welcome to The Journal, our show about money, business, and power. I'm Jessica Mendoza. It's Wednesday, May 14th.

2:50Coming up on the show, how an insurance denial threw one family into a life-or-death crisis.

3:12Say you get sick and go to the doctor. Your doctor gives a diagnosis and prescribes a treatment, like medication or, if it's really bad, surgery. In the U.S., if you have health insurance, your doctor then sends the treatment plan to your insurance provider. The goal is to get the insurance company to agree to pay for the treatment. Five billion health insurance claims are filed in the U.S. every year. If the insurance company approves the expense, great, you go get your treatment. But if insurance denies the claim, then it's up to you, the patient, to pay for it. And a lot of medical treatments cost way more than most Americans can pay out of pocket.

3:55Denials are pretty common. According to a recent study by a health policy nonprofit, around 19 % of in-network insurance claims are rejected every year. And out-of-network denials are almost twice as high. I asked my colleague Julie Wernow about this. She covers health care. Why do insurance companies say they do this? Why is this the process that's set up? And what insurers say is it's their job to try to rein in the costs of our very expensive health care 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.

4:42It's not about the individual. 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. 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. 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.

5:28But that caused other problems. 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 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.

5:59Ed's doctors determined that he couldn't survive at the rate he was going. 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, investigational and not medically necessary.

6:35So, Julie, who would have made that recommendation? Largely, we're talking about doctors and nurses. 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. So what kind of explanation do patients typically get when they get a denial? Very little explanation. I saw denial letters where essentially it was a line that said, this is an unproven treatment.

7:22I saw denial letters where it referred to some kind of issue with the drugs they needed. Often, 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.

7:52Meanwhile, 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. 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. Was there any concern that, you know, your dad was going to run out of time?

8:30Yes. That was, I think that was the scariest part to me, knowing that it's happened before. 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. 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.

9:15A 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. 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.

10:07In 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. I was throwing every Hail Mary. What she did? That's after the break.

11:05Erin 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, 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. 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 complicated.

11:50complex? 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. 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.

12:33In the process of appealing, is there any way to know like who or what kind of doctor reviewed your claim? Do a lot of people know who denied their claim? Absolutely not. That seems pretty complicated to navigate. It can be a really dizzying experience trying to figure that out. 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 health care systems like hospitals. So she started making calls to her contacts in the industry. She called nonprofits and health care agencies, anyone she could think of that might be able to help.

13:14Her detective work led her to a company that was still in the process of starting up, called Claimable. Its founder, Waris Bokhari, 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.

13:55I would start working on it at night, and all of a sudden it would be midnight. And I would be 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. I was still working. 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. Right? Yeah.

14:27Ed 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,

14:47Ed 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.

15:23Hey, Dan. Hi, Aaron. How are you doing? How do you feel today? I feel very good. I mean, I had a busy day. I was, you know, went to mass, then went and worked out, and then spent... 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. You know, three months from the time I had my surgery, I played my first 18 holes of golf, and now, you know, I've come back pretty much to normal. I'm shocked you didn't add that you shot in 82.

16:00Ed says he thinks a lot about what Aaron did to help him get the transplant. I mean, she saved my life. Don't start crying now. 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. And she fought this thing. I mean, I can't tell you how determined she was. and what she did on this thing. And it was really impressive. She fought this thing hard.

16:41Anthem 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 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.

17:24I 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? 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? 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.

18:10And 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.

18:52Thanks for listening. See you tomorrow.