Patient Empowerment: How to Fight the Insurance Company and Win!

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Each year, some patients find themselves fighting the health insurance company just to stay alive. This may sound ludicrous, but it's a reality someone you know will face. While some have found it difficult for their voices to be heard over the health insurance giants, one patient, would not take no for an answer. On this episode of Patient Power, Dr. Darryl Zuckerman and his patient, Chuck Warman share an incredible story of patient empowerment.

Chuck Warman, a 50-year old applications engineer, was diagnosed with primary, inoperable liver cancer. Chuck spent a great deal of time educating himself about his condition, including researching all available treatments, even though he was only given 3-4 months to live. He and Dr. Zuckerman settled on a particular course of therapy based on Chuck’s research and he received two successful treatments. After the two initial treatments, his insurance company suddenly declared that additional treatments were medically unnecessary and refused to cover the cost. Rather than accepting their denial, Chuck decided to fight for coverage. He and his family battled it out with their carriers and, in the end, won back the coverage he needed. Having figured out how to work the system by educating himself, he helps to educate others through blogs and online forums, but also insists all this may have not been possible without his doctor.

Dr. Zuckerman is an experienced radiologist and Associate Professor of Radiology at the University of Cincinnati Medical Center. Dr. Zuckerman proved to be an invaluable resource to Chuck by assisting him with his efforts to educate himself about his condition, the treatments available, and which of those treatments would likely have the best chance of success. Dr. Zuckerman also helped Chuck during his struggle with his insurance carrier over reimbursement policies for his Therasphere® treatments by meeting with company representatives to discuss why the treatments were indeed necessary to save Chuck's life. Finally, Dr. Zuckerman took an interested and active personal role in treating Chuck's illness. His efforts to take a personal role in Chuck's treatments alleviated the fear and helplessness that patients often feel in an impersonal hospital or clinical setting. Listen to this program to hear more about how Chuck Warman fought the insurance company and won - if you experienced something similar or are searching for information on the topic, this program is a perfect place to start.

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Transcript

Andrew Schorr:

Hello and thanks for joining us on Patient Power live on Health Radio and on my website www.patientpower.info. Andrew Schorr here broadcasting live from Seattle every day, trying to help you and your family be smarter about specific health issues and health care issues, and one of the things that is going to be very much in the news now coming up is a new documentary by an Academy Award winner, Michael Moore, from Flint, Michigan. He of course had done “Bowling for Columbine,” and remember that was about guns in the school and guns and violence in the United States. He earlier had done “Roger and Me” about General Motors. Well now he has coming out this weekend a new documentary called “Sicko,” and it really takes on the health insurance industry in particular and whether they’re there for us.

Of course there are millions of people in America who don’t have health insurance. There is lots of debate in Congress. I know my Congressman, Jim McDermott from Seattle, has a lot to say about that and wants us to go to sort of a Canadian-style system, but there’s debate about that. Is that good, is that bad, will it give people the quality of care, but certainly it would give more people insurance.

Then there are people with health insurance who have a job, and at some point maybe you find the insurance company is not there for you. Imagine if that happened to you when you have a very, very serious life threatening illness. You’re worried about being at death’s door, you have a family, you want to go on with your life, your doctors agree on what’s the right treatment for you and then the insurance company says, ‘Enough already. We’re not paying for it.’

Well that’s what happened to Chuck Warman from Moscow, Ohio, and Chuck is a fighter. He’s fought liver cancer, and right now he is winning, and he has had to go through a lot of treatment, which he will describe. He is an applications engineer for a company called Sphere USA in Ohio, and so he went to the University of Cincinnati. They agreed on what care was right for him and then as care progressed finally the insurance company was trying to put the brakes on it. Chuck, did I have it right? Is that more or less the way it happened?

Chuck:

Yes. Yes, that’s the way it happened. Chuck’s Story

Andrew Schorr:

So you were diagnosed with primary liver cancer, certainly one of the most serious diagnoses, and I know earlier you had hepatitis C, and that can lead to cirrhosis of the liver. There are really millions of people in America with hepatitis C, and I know you know many people don’t even know they are walking around with that viral load in their liver, and we are finding of course it can lead to liver cancer. That happened to you. So tell us about what treatment began and where the insurance company was at the beginning and then how that changed.

Chuck:

Well at the beginning when I went to my hepatologist they started me on an interferon ribavirin, and that was for the hepatitis C, and that was expensive, but insurance covered that without any problem. I was a non-responder to that, and then about two years later it progressed into liver cancer, and the first thing they tried was a, when I went to the surgeon, it was nonoperable they told me, and he tried radio frequency, and that didn’t work either. There was too much cancer for him to burn all of that cancer out of there. So they put me on, at that time it was a new treatment here in Cincinnati and it was TheraSphere, and that’s where they put small seeds, radioactive seeds, in the tumor itself in your liver. So you don’t get sick from it, and for me there were no side effects. The next day I got up at 4:30 in the morning and went fishing, and you know life was grand. It shrunk the tumors.

Andrew Schorr:

Right, and this is commonly used in prostate cancer now a lot.

Chuck:

Right, it’s pretty close to the same, and it worked great for me, and then they found some cancer in my other lobe so they put it in there, and they shrunk the tumors down. They put me on the transplant list, which was something that I hoped for but I didn’t think it really would happen, and then like you spoke of about people walking around with bad livers, I’ve had three donor livers and all three of them have been bad. So they came from a cadaver, and they had me prepped and ready to be going in the operating room, and two of them had cirrhosis, and one was a fatty liver. So I wasn’t able to get them.

So then I had to just keep waiting, and as I was waiting the cancer came back. Well all of a sudden for whatever reason Anthem decided that TheraSpheres were no longer a medical necessity.

Andrew Schorr:

Now we should tell people Anthem is a large health insurance company in America. Go right ahead.

Chuck:

And I had a little debate on that. I said, how can you tell me it’s not a medical necessity when that’s what’s, you know my doctor gave me four to six months to live, and at this time it’s been about a year and two months. I’m still alive. This is a necessity.

Andrew Schorr:

Right. Not only were you alive Chuck, but I bet you were working. Right?

Chuck:

Oh yes, and still I don’t take any pills. I don’t take any medicine at all, even today. I don’t take a pill.

Andrew Schorr:

Right, so I just want to clarify for folks. So okay, so this is not where Chuck had received care that wasn’t working. There was effective therapy that was helping keep him alive, pay taxes, go to work and support his family. You’ve got what, three kids right?

Chuck:

Right.

Andrew Schorr:

So moving on with life, and you can imagine with a serious primary liver cancer this used to be unheard of. So you’re showing what medicine can do, but now the insurance company, and we should say, liver cancer is not that common. So we have people like at your employer who are paying health insurance premiums for millions of people while treatment of liver cancer is expensive, it’s not that common. So you’re the guy where we need to marshal more resources, but at this point now Anthem was saying no. Go right ahead Chuck.

Chuck:

And so then they said it wasn’t a medical necessity, so they denied the medical procedure. So then when I talked to them down at UC, University of Cincinnati, they asked me if I could get involved in this to help try to get this turned around because you know they had spent a lot of money on getting what Dr. Zuckerman as he comes in getting all the equipment they need. They’d spent a lot of money on this, and now all of a sudden it was being pulled from under them, and they were going to deny all the claims.

So when this happened i got on the Internet right away and started e-mailing the company that makes the TheraSphere, and at that time they weren’t very aware that this was going on.

Andrew Schorr:

No they normally wouldn’t.

Chuck:

So they came to my house. We had a meeting, and we kind of took it from there.

Andrew Schorr:

Chuck I want to hold your story for just a minute because I want to let this fold out. I want to help people, our listeners, understand. So Chuck Warman is a guy diagnosed with what could be a pretty terminal condition, and when his insurance company said, ‘No’ he started gathering the forces; the manufacturer of the devices he needed, doctors, and the big university medical center to fight back and he won. We are going to hear that story and meet his physician when we continue on Patient Power. Stay with us.

You’re listening to Patient Power. We’re talking about a very timely issue and that is how to fight the insurance company where you have health insurance you think and when at some point they are saying, ‘Oh we’re not going to cover that,’ and where you feel that’s a death sentence, and maybe your doctors, very, very reputable doctors, think that too. Well that’s what Chuck Warman faced from Moscow, Ohio as he was getting care at the University of Cincinnati, one of our leading medical centers in the world. So there you had newer technology to fight his serious illness, primary liver cancer, and little seeds, little radiation seeds that could keep his cancer at bay, and not just have him lie there, but where he could work, where he could support his family, and then now you have a major insurance company saying, ‘Well, that’s not medically necessary.’ Whew.

Well so really in this time and particularly Michael Moore has this documentary “Sicko” coming out, which will have a lot of people talking about health insurance in America, whether it’s what he covers particularly some injustices related to mental health coverage or just health insurance in general, which is a hot topic in Congress.

So here’s Chuck, a hard working guy at Sphere USA in Ohio and then the premiums that were paid by his employer, and maybe Chuck you were paying some too, to stand by you when you were seriously ill, and while they did for your hepatitis C medication and some other treatments, then when you were at death’s door, if you will, or could have been, they weren’t. So as you said you got together with the manufacturer of the radiation seeds, and they actually came to your house, and you had a meeting. This was about three months ago when the insurance company was saying no. So what was that discussion, and what did you decide to do?

Chuck:

Well they wanted to hear my story. They also wanted to be able to put something on a DVD so they could get it to their people in-house, and also it was really two parts. One part was the hope it’s put in my life from a death sentence to now, being able to be transplanted, and then the other part of it is how some of the insurance companies are going against this, and with a lot of us this is the only hope we have. It’s not like this, a lot of stuff out there like you mentioned, it’s a rare disease, primary liver cancer, but it’s up and coming. It’s one of the few cancers that are growing in the United States, and the one thing that really caught me is I’ve been very selective on my doctors. I do my research, I make sure that the doctors I go to I can trust them with my life, but one thing I didn’t realize was I don’t have much control over my insurance, over who my carrier is, and that’s the part that really got me. So I really had to do some fighting to go against them. You know my doctors they all said, ‘this is the best thing for you.’ They were all excited when they shrunk the tumors, and then I have an insurance company saying it’s not a necessity for me.

Andrew Schorr:

Yes, I want to talk about that battle. So here’s the thing. You are “Mr. Patient Power” Chuck, in lots of ways. So you did your research, and you then could look in the eye of Dr. Zuckerman and other doctors. We’re going to meet Dr. Zuckerman, a radiologist from University of Cincinnati, who’ll be calling in a minute, and you could select them. You could hire them in a way and say, ‘I’m putting my life in your hands,’ and you do your research on who are the eminent physicians to help you, but the insurance company people who make the decisions we don’t get to meet. They may be far away. They may be number crunchers; some of them may be doctors. I don’t mean to paint a broad brush because certainly like my situation I was able to get cancer therapy, and they did pay for what I was going through, and I’m grateful. I think the cost was probably well over $50,000, and your bills were probably much higher, but at any rate we want to believe they’re there for you and there is this variability, and we want to be able to at least be able to understand some logic to it. So you all decided to fight. So tell us about that process, how that worked.

Chuck:

Well part of the fight was I contacted Anthem and then I got in touch with the people from TheraSphere, and you know I just wouldn’t accept the “no” answer. So after, I got my work involved in it. I got my human resource person involved in it, and they knew that the seeds had helped me. So when they got on the phone and were talking to the people from Anthem they were really able to hit them pretty hard about this is a necessity.

So what it finally came down to was they finally okayed my last therapy that I had with Dr. Zuckerman. They said, ‘Okay, we’re going to okay this, and the reason we’re going to do it is we okayed three other times when we shouldn’t have. So we are going to okay this one.’ To me that was kind of like not saying, ‘I’m guilty of this, but I’m going to do this out of the kindness of my heart.’ Now I’m grateful for Anthem to finally pass that because that helped me, but it was just a huge ordeal, and work was behind me enough to we now have a different carrier, insurance carrier.

Andrew Schorr:

Oh, you mean Sphere changed insurance. Oh wow.

Chuck:

Oh yes. That was a big thing. That was a big step for them too, and I’m sure there is some money things involved, but one of the big reasons was they saw what kind of battle I had to go through to do this.

Andrew Schorr:

Right. I’m going to tell a little story just before the break because it applies to a lot of conditions. Our oldest child, Ari, is 17 years old. When my wife was pregnant with him she went into preterm labor, and of course there can be tremendous insurance expenses if a pregnancy is not going right, and so you know I kept calling the insurance company, which we had. My wife is a graduate of UCLA and so we had a policy at that time, we were self-employed, through the UCLA Alumni Association. You know a pretty university, probably pretty smart graduates who put their faith in that health insurance, and so we went through the pregnancy, and she had been in the hospital about six weeks and lots of intervention. The baby was, excuse me, she wasn’t in the hospital that long, in and out over maybe four weeks. The baby was born three weeks premature, and so when it came to get the bill paid, which was about $30,000, I called the insurance company again and said, ‘we’ve got this bill,’ and they said, ‘Oh Mr. Schorr, we’re not paying that’ And I said, ‘Well wait a minute. The policy said you’ll pay for complications of pregnancy,’ and they said, ‘Oh no, our medical director says that was a complicated pregnancy, and I said ‘Huh?’ I said, ‘I have a graduate degree, my wife does. She went to UCLA. There are thousands of UCLA graduates. They are not going to understand the distinction.‘ It’s kind of like what you were saying you know, no logic to it, and I said, ‘So let me tell you this. I’m going to go back to UCLA and tell them that they should reconsider whether you should be their insurance company because you don’t stand by people, and you make a distinction no one would be able to understand.’ That’s A and then B I said, at the time we were doing daily television medical news stories, my wife and I, Esther who had the baby, and I said, ‘I think people would be very interested, ‘this was 17 years ago, ‘people would be very interested to know the distinctions that health insurance companies make for people who are insured when they think you’ll stand by them.’

So she called back about five minutes later and said, ‘You know, our medical director has decided that we’ll cover it in this case.’ So kind of like what you had. If you put some pressure on and use what leverage you can, so is that the lesson, I mean we don’t want to think that we have to do it, but is that the lesson Chuck? You have to pull out all the stops?

Chuck:

I had to look at this as if this was a fight for my life, period. Whatever I had to do, if it meant I had to step on toes, go over people’s heads, whatever I had to do I had to do this, and now I’ve found that some good has come out of this. A friend of mine has started a meeting for people with liver cancer, and so we are able to answer a lot of the questions.

Andrew Schorr:

Let’s take a break Chuck. I want you to tell the story of your friend and how we go forward, and we want to meet your doctor from the University of Cincinnati, Dr. Zuckerman, and find out how doctors feel about it and how they can help too. Much more on health insurance and going to battle as we continue on Patient Power.

Welcome back to Patient Power. A very significant issue we are talking about today and that is if you have health insurance, and I hope you do, and we’ll do other shows on people who don’t have health insurance, and what are we going to do about that in America. It’s certainly a national problem, but if you have health insurance you want to feel that it’s there for you when you need it, and so you do your research, you are a powerful patient, you connect with leading doctors and there maybe you have a life threatening condition like our guest today Chuck Warman has had with primary liver cancer.

Then there are expert doctors who are saying, ‘You know we are seeing some benefit to this approach. This is helping you.’ You want to feel that the insurance company; your employer’s insurance company where now many people now they are paying part of the insurance too, you are paying, the employer is paying; that it stands behind you. It is not going to let you down when otherwise you would be at death’s door.

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