Irrationality Abounds

It's been a tough time here at Advocacy for Patients. We took on a handful of really difficult insurance appeals, and we've been beaten up pretty badly. The thread that runs through it all? Irrationality. It's not really about money. It's certainly not about what's best for patients. It's about a system that has run amok.

And so the fact that 33 states are suing to stop the health reform bill from taking effect is just plain nuts.

We had a patient with a small tumor in her inner, inner ear, close enough to the brain so you'd want to be really careful about treating it. The doctors recommended proton beam radiation therapy -- something they've been using and studying for over 20 years to treat just this type of tumor. The insurance company said it's experimental. Now, if she doesn't have proton beam radiotherapy, she's going to have some other very expensive treatment, so this isn't just about money. And we took it to external appeal and the external reviewer said we were RIGHT that this wasn't experimental. But, the reviewer said, because he was not convinced that proton beam therapy was really safer than photon beam therapy, proton beam therapy wasn't medically necessary!!!! HUH?! We win on the argument that it's not experimental and lose because it's not medically necessary simply because you don't think the proton beam therapy is likely to harm surrounding tissue, even though it's clearly better calculated to avoid causing damage? Are you kidding? I've never won the argument that something is not experimental but still lost the appeal. It's totally irrational.

Then there's the patient with occipital neuralgia who needs an occipital nerve stimulator. This one is really something. She's tried everything -- the list of medications she's tried is as long as my arm. She's in agony. She appealed a year ago (without me) and the insurer told her to go get an opinion at a teaching hospital. So she did, and they said she needs the stimulator. So we went back to the insurance company. First, they tried to refuse to hear our appeal entirely because they already heard it a year ago. Forget the fact that they told her to get another opinion and then come back -- they didn't want to hear it again. They actually were stupid enough to put in writing that they had only denied the claim again, triggering appeal rights, by "mistake." They should have just rejected the claim because it was the same as a year ago. Never mind the HUNDREDS of pages of additional medical records and journal articles we submitted. So they held our appeal hearing WITHOUT A MEDICAL DIRECTOR. That's right -- they went through the motions without even having a doctor review the file. All the work we did to gather 10 years worth of medical records and research the heck out of it, and we didn't even get a fair hearing. So now we have a final appeal to the employer.

Why isn't this about money? It's a self-funded plan. If the patient goes out on disability insurance or disability retirement, it's going to cost the employer at least as much as it would for them to pay for this surgery so she could continue to be a productive employee. DUH! Not to mention the cost of her prescription drugs, which are through the roof. Based on the way the insurance company spoke to us, and the emails from the medical director that were nothing short of spiteful, I think this is just mean. And again, irrational.

Then there is the young man with Tourette's Syndrome. His case was so bad that the drugs he was on to keep him from hurting himself had him pretty well sedated full-time. Four years ago, he got a device that provides deep brain stimulation that has been a miracle to him. The device is FDA approved for several uses -- dystonia, obsessive-compulsive disorder, Parkinson's disease -- but not Tourette's because there are so few people with Tourette's that they can't put together large studies. Before his father's employer switched insurance, the insurer paid to have the devices implanted. Now, he needed a new battery. The insurer refuses. The symptoms come back with the dead battery. His family went ahead and got the battery replaced, but we're still fighting with the insurance company. Our second level appeal hearing is scheduled for tomorrow. Wish me luck. But I'm already confused -- they sent me a copy of their entire file and there's no medical review. Another denial without a review by a medical director? Huh?

Why isn't this about money? At the very least, they'd have to pay to have the devices removed, and then the patient would be back on so many meds that he'd be totally sedated again. Meds are expensive and they never end. Compared to the cost of a battery replacement every few years, I bet the battery is cheaper.

These are hard cases. I knew when I took them that they would be hard. What I didn't know is that the occipital nerve stimulator would be denied because the studies are so small -- while in the same sentence, the insurer's consultant says of course, you can't have larger studies because the illness is so rare. What I didn't know is that they would not even have the appeal reviewed by a physician. What I didn't know was that I could win the argument that proton beam radiotherapy is not experimental and still lose the appeal. None of this makes any sense.

Thank goodness we win once in awhile. In what could have been the most irrational case of all, I have a client with Parkinson's disease who has been on long-term disability for almost 10 years. All of a sudden, they decided he's no longer disabled. Huh? Parkinson's is degenerative. It only gets worse. There is no cure. You can't have been disabled for 10 years and all of a sudden not be disabled any more. It's medically impossible. And yet I lost the first level appeal!!! My second level appeal letter was 13 pages long. I went through all of the patient's medical records from 2001 to today in pain-staking detail, documenting the decline of his condition over time. I mentioned a few times how irrational their reasoning was going to look to a court. Indeed, although we typically don't litigate, I was really inclined to go to court on this one myself because of how clearly right we were, and how clearly irrational the insurer was. Thankfully, finally, we won.

We may still win the occipital nerve stimulator and the Tourette's case. But the work involved -- there is no chance that any of these people has even a remote chance without my help. I can't help but think about the people who don't know I'm here and have nowhere to go. If they all came to me, I couldn't take all the cases. The insurance companies know most people can't mount this type of appeal. Just learning the medical jargon well enough to do the research to prove that something isn't experimental is a huge obstacle and a good reason why this isn't done more routinely.

But beyond that -- beyond these individual cases -- it is so clear from where I sit that the system is so horribly broken, than irrationality abounds. I'd almost feel better if it were all about money because then I could at least understand and predict outcomes. But as things are, it's impossible to understand or predict anything.

Stupid things happen -- you send an Anthem BCBS appeal to the wrong address, and a month later, you get a letter saying "we haven't done predeterminations since March 2003 so we can't process your correspondence." What? We already got a denial of a predetermination, so yeah, you do still do them. And you told us the wrong address, so now we will re-send the whole appeal yet again (at the cost of about $10 postage) to a different address and maybe they'll at least understand that we're submitting an appeal.

Every day, stuff like this happens. It's maddening, especially when we're really busy and things are piling up. All the administrative errors cost the insurance companies money, so it's clearly irrational that if you mail something to BCBS Appeals in Lexington, KY, they can't figure out that it should go to BCBS Appeals in MD instead and just send it there. Or rather than sitting on it for a month and then sending me a nonsensical letter, how about calling me and asking me what it's about? It would be much easier, no?

When you live in insurance-land, as I do, you almost become immune to the irrationality of it all. You expect the irrational. You stop getting upset about it. That's not a good thing. When we're talking about life and death, irrationality should be totally unacceptable. We all should be outraged.

And so I cannot help but conclude that the states who oppose health reform either don't spend enough time dealing with insurance companies to know how irrational they are, or they don't care. I prefer to think they're ignorant than to think that they're evil. Indeed, most governments don't operate a whole lot more rationally than insurance companies do. Perhaps "too big to fail" should really be "too big to exist in the first place," so nothing -- no company, no government agency -- should be allowed to get so large that irrationality becomes the accepted norm.

What I do know, though, is that patients -- the ones being dealt the irrational decisions without explanation or resources to combat them -- are the ones who suffer. And that's unacceptable. Indeed, I think every one of you who lives in a state that is suing to overturn the health reform law should be screaming about it. How dare politicians spend taxpayer dollars to bring totally frivolous lawsuits instead of spending that money trying to force insurance companies to act rationally in the first place, so reform isn't so badly needed? And the lawsuits are frivolous -- I haven't read or heard a single explanation of the legal basis for these suits. Indeed, I participated in a panel discussion about this at a law school and I challenged anybody in the room to explain to me what the basis for the lawsuits is. Not one answer.

[And just fyi, as best I can gather, the states that are suing to stop reform are: Florida, Georgia, Oklahoma, South Carolina, Nebraska, Texas, Utah, Louisiana, Alabama, Michigan, Colorado, Pennsylvania, Washington, Idaho, South Dakota, Indiana, North Dakota, Mississippi, Arizona, Nevada, Virginia, Mississippi, and Alaska. An overview of the litigation can be found here. Note that several self-described Christian organizations also have filed suit to stop the law from taking effect. Don't ask me why.]

So we have insurance companies spending a bunch of money to fight people like me who are trying to get people the treatment that allows them to function and, in some cases, to live, even when the treatment would not cost more than the treatment they are willing to cover. We have insurance companies making costly errors, and crazy decisions like suggesting that a Parkinson's patient can become less disabled and trying to defend those crazy decisions even after appeals are filed. And we have people spending a TON of money trying to stop a law that would exert some control over the situation, at least making it easier for consumers to appeal adverse decisions, fund consumer assistance programs at the state level so that states would help consumers appeal adverse decisions, and allow people to change insurance if their insurer's lack of rationality is so extreme that they choose to abandon them entirely.

Is there one thing in all of this that makes any sense whatsoever? Jennifer