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.