His longest hospital stay lasted almost seven months, during which he nearly died twice from complications that caused kidney failure, as well as heart, lung and liver disease. Finally, he went into remission in September 2008 and reveled in a healthy year blessed with the mundane miracles of childhood.
And Paul and Maria allowed themselves to exhale.
Ten weeks ago, routine follow-up tests indicated that Kyler's cancer had returned. This time, his treatment options are few, since recurrent neuroblastoma brings with it an entirely different set of medical considerations than the ones associated with an initial diagnosis.
Kyler's CHOP oncologist, Stephan Grupp, says that Kyler needs a treatment called MIBG therapy, in which a radioactive drug, delivered intravenously, travels to tumor sites, slamming them with radiation.
Depending on how Kyler responds, he may need up to three rounds of MIBG to knock his cancer back into remission.
MIBG is "less toxic than chemotherapy, and is usually tolerated well by patients," says Grupp, a world expert in neuroblastoma, thanks to CHOP's status as a national referral center for kids with the rare disease. MIBG therapy is the only effective treatment available to Kyler at this stage of his illness. Without it, he won't live to see his sixth birthday.
Unbelievably, Kyler's insurance carrier, Harrisburg-based HealthAmerica, has 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 therapy is not approved by the Food and Drug Administration, another criterion that HealthAmerica requires.
"It's considered experimental because not enough kids with recurring neuroblastoma live long enough" to become candidates for MIBG, says Paul VanNocker, 44, a heavy-industrial-equipment salesman (Maria, 37, is a homemaker). "So, really, all treatment at this stage of Kyler's disease is considered experimental."
Only about 650 children in the United States are diagnosed each year with neuroblastoma. Half of them, including Kyler, have the most lethal form of the disease. So it's tough to study a large enough cohort of patients like Kyler to yield research results that HealthAmerica might consider valid.
But that doesn't mean MIBG is ineffective.
"It's considered the standard of care in Europe and the United States for recurrent neuroblastoma," says Grupp. "It's not an unproven treatment with no basis in medical science. Actually, the results are often very good."
Paul VanNocker appealed HealthAmerica's decision, which once again denied MIBG.
"They have a plan for Kyler," says Paul angrily. "Their plan is for him to die."
HealthAmerica spokeswoman Kendall Marcocci told me that she was not permitted to divulge the amount of money the company has paid so far for Kyler's treatment, but Paul VanNocker says that the figure is between $1.6 million and $1.8 million. He was not sure what Kyler's MIBG therapy would cost, since it's unclear how many MIBG treatments Kyler might require, but Grupp says that the treatment is actually less expensive than other cancer therapies.
Which seems to support Marcocci's contention that HealthAmerica has declined Kyler's MIBG therapy not because of its cost, but because of its experimental nature. Marcocci wouldn't discuss specifics of Kyler's case but said the company isn't in the business of treating patients; it instead applies a "medical-based-evidence approach" to determining whether a requested treatment is a covered benefit. Except that, by denying the only effective treatment available to Kyler, HealthAmerica has usurped the opinion of the doctor who knows what Kyler needs to survive.
Sorry, but that absolutely puts the company in the business of treating patients.
I have to say, when I hear people fret that a public insurance option would take medical decisions out of doctors' hands and place them in the mitts of bloodless bureaucrats, I have to scratch my head.
Do they not understand that bloodless bureaucrats are already in control? And that the "death panels" everyone fears already exist in the insurance industry?
To deny Kyler coverage is to prescribe his death.
Last week, CHOP agreed to proceed with Kyler's first MIBG procedure, assuming that Medi-caid will pick up the tab. He withstood the procedure well and is back at school, happy to be among his playmates again.
If Medicaid doesn't come through, the VanNockers have no savings to pay for additional MIBG procedures that Kyler might need to stay alive, because the out-of-pocket costs associated with Kyler's illness have left them bankrupt. Paul estimates that he and Maria have spent "well over $60,000" of their own money - exhausting cash savings, IRAs and almost every asset but their home to pay expenses not covered by insurance.
"If Kyler can't have MIBG, he will have to enter hospice care," says Paul. "He'll have a good month, and then he will lose the ability to walk. Then he will become bedridden. And then he will die a slow, agonizing death."
MIBG is the only option to postpone that terrible possibility for as long as possible.
But the death panel's decision, it seems, is final.
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