Kevin Hollinshead, Columnist
Ideology: Progressive |Writing from: Fort Collins, CO
Five year-old Kyler VanNocker of Edgewater Park, NJ has neuroblastoma, a rare and deadly type of childhood cancer that attacks the nervous system, leaving his body riddling his body with tumors. Diagnosed at 2 ½, he has cumulatively spent almost a quarter of his young life in and out of hospitals, nearly dying twice from complications.
He was finally granted a reprieve in September 2008 when his cancer went into remission. For the next year, he enjoyed a relatively normal childhood.
Then, Kyler’s cancer returned. Recurrent neuroblastoma is much harder to treat; Stephen Grupp, the boy’s oncologist, said that he needed two or three rounds of a treatment called MIBG therapy, in which a radioactive drug, delivered intravenously, bombards tumor sites with radiation. The nightmare would finally end, right?
Wrong. Kyler’s insurance carrier, Harrisburg, PA-based HealthAmerica, denied coverage for the treatment, which it considers “investigational/experimental” because there is “inadequate evidence in the peer-reviewed published clinical literature regarding its effectiveness.” The company also requires that a treatment be approved by the Food and Drug Administration.
Only about 650 children in the U.S. are diagnosed with neuroblastoma each year. Half of them, including Kyler, have the most lethal form of the disease. So it’s tough to study a large enough pool of patients like Kyler to yield research results that HealthAmerica might consider valid.
But that doesn’t necessarily mean MIBG is ineffective. “It’s considered the standard of care in Europe and the United States for recurrent neuroblastoma,” Grupp told the Philadelphia Daily News. “It’s not an unproven treatment with no basis in medical science. Actually, the results are often very good.”
Also, the company previously covered two (less expensive) therapies for Kyler that weren’t peer-reviewed or FDA-approved. The first treatment consisted of the only known drug at the time to treat his condition, and the treatment came courtesy of a second drug making its maiden voyage on the market.
Kyler’s father Paul appealed HealthAmerica’s decision. The claim was again rejected. HealthAmerica again cited the MIBG’s “experimental” nature, not the $55,000 per round of treatment it would cost. Paul and Maria VanNocker have filed a lawsuit on behalf of their son, and, in spirit, on behalf of others who’ve had the bad luck of coming between an insurance company and profits.
Right-wing political hacks spent the better part of last year yelping that a public health insurance option would create government ‘death panels’ that would take medical decisions out of doctors’ hands, and place them with soulless bureaucrats.
Well, that’s exactly what we have here. HealthAmerica has decided to place their profits over a doctor’s professional opinion so the company had been effectively calling the shots. To deny Kyler coverage was to prescribe his death.
Fortunately the Children’s Hospital of Philadelphia (CHOP), a morbid second home to Kyler lately, proceeded with two rounds of MIBG therapy despite the VanNockers’ inability to pay for it– Kyler’s parents recently declared bankruptcy after pouring in more than $60,000 of their own money (remember, they have insurance) to keep their son alive.
CHOP hopes that HealthAmerica will reverse their decision by reimbursing the VanNockers, or that Medicaid will cover the cost of MIGB, since the bankrupt VanNockers are now eligible for benefits.
Kyler’s condition has improved considerably thanks to MIGB, and his doctors hope to get him started on a treatment regiment that is less toxic to his overall system.
This is not to say Kyler is out of the woods yet. Neuroblastoma, to understate things, is a serious diagnosis, so his prognosis will always be up in the air to a degree. He’s completely at the mercy of his cancer.
But at the moment, because his doctors, all internationally renowned experts on neuroblastoma, and not his insurance company, are making medical decisions, Kyler at least stands a chance of making it to his sixth birthday in November.
As said as this story as (and as happy as it may appear to turn out), you skirt around what the real issue is here.
Republicans are not saying that no reform is needed or that insurance companies always do the right thing, and I think you’d be hard pressed to find one who has said something like that. The issue is that the government will not make situations like this better. Even if the government decided to approve the treatments (though I think it’s very likely that the government will also have a policy with regard to drugs that are not FDA-approved), it’ll take them years to even process this kind of insurance request, and Kyler would be long gone by the time the government approved (or possibly denied) this treatment request.
Until you show that government can DO IT BETTER (that is what this debate centers around – will government do things better), then this post is mainly pointless. There’s nothing to argue. Yes, we need reform to keep insurance companies honest and keep insurance costs down. The debate is over HOW to get there, and this story tells nothing about how the government would handle a similar situation.
Alec, just wait for my column tomorrow.
You’re absolutely correct in saying that my column doesn’t advocate how the government would handle a similar situation, and that’s by design.
All I wished to do was remind people that this is a very real issue, and that Republican refusals to offer anything except tort reform and insurance portability (while better than nothing, akin to giving a 1 liter blood transfusion to someone who’s lost 5) hurt people who are otherwise doing all the right things to ensure their families’ health. Both sides of the proverbial media aisle have covered the politics of this debate ad nauseum, so individual stories like this give it a much-needed human element.
Also, when you say “the government will not make situations like this better” or that it’ll “take years [for the government] to even process this kind of insurance request,” what are you basing that on?
Not to be a jerk, but it’s a touch ironic that you state I need to show how government can handle health care better than the private sector without offering any solutions yourself, isn’t it?
If that was your point, then good, I suppose you accomplished that goal.
I base my government assumptions off of every other time I encounter government. Going to the DMV (an all day affair), getting a passport (takes several months when all they need to do is type my information into a computer and hit print), filing tax returns (complicated to the point of being silly and it takes months to get my money back). These are the smallest examples of my day-to-day interactions with government. Imagine trying to get hundreds of thousands of dollars from them for medical treatments that aren’t FDA-approved?! It’d be too late for Kyler and, I’d imagine, most people suffering like he is, to get their treatment.
In response to your last question, I don’t think it’s at all ironic that I’m criticizing the Democrats’ proposed solution without offering one of my own. It’s not my responsibility to come up with solutions to all of our country’s problems (though I do think the Republicans are doing a nice job without my input). It IS my responsibility, however, to speak up when I don’t think they’re doing things right. Not all change is good change. Just because we need reform doesn’t mean any reform will do. I’m not 100% sure what we should do, but I AM 100% sure that the Democrats’ plan is what we SHOULDN’T do.
Kevin: The Post Office. The local bus company. Social Security(broke!) Medicare(also broke!) Need more? The Education Dept. (spend more, kids get dumber!).
This is where I get off the train.
The sad story of Kyler is that if he were born 5 years from now, under Obamacare, he’d be considered untreatable after the attack of the first cancer, he’d have already died, and you wouldn’t know his name.
I suspect you only know his name because you were advised of his sad story by some PR person, or mole or advisor(Note to Conor: This guy’s a mole. Nobody could really believe this stuff except someone from Colorado, the home of Gov. Lamm, who 15 years ago wanted the old to “get out of the way and die.”
The death panels are going to come from the Govt. my friend, not the public or the insurance companies.
Kyler’s case is indeed a tragedy as Kevin points out. Obamacare nor the status quo will save people in cases like his. But since such diseases are very rare, insurance companies should cough up the money for such procedures, if not for moral purposes but for PR purposes. Here are two modest proposals to incentivize insurance companies. One idea is for individual to donate significant sums of money to a private watchdog who would then run ads on TV demonizing insurance companies dumping children like Kyler. Another idea is to mandate each company to post on their websites a list and a description of all cases they rejected. The cases would be, of course, would not reveal any private data such as patient names. Just a quick thought.