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Ronnie Polaneczky: Parents suing to force insurance firm to cover their ailing son's therapy needs

PAUL AND MARIA VanNocker are filing a federal lawsuit today on behalf of their 5-year-old son, Kyler, whose insurance company, HealthAmerica, refuses to pay for the latest treatment needed to prolong his life.

PAUL AND MARIA VanNocker are filing a federal lawsuit today on behalf of their 5-year-old son, Kyler, whose insurance company, HealthAmerica, refuses to pay for the latest treatment needed to prolong his life.

The complaint raises lots of questions that I assume will be answered at trial, should it come to that. The question it won't answer is one that's been gnawing at me since I first wrote of Kyler's plight in December:

How do HealthAmerica's overlords sleep at night?

I know my own dreams would be haunted if I acted as arbitrarily, capriciously and abusively - to borrow some pointed adjectives from the complaint - as the VanNockers allege HealthAmerica has regarding their little boy.

The Harrisburg-based company's denial of benefits to Kyler, the lawsuit claims, is the result of "a biased, self-serving misreading and misinterpretation" of everything from Kyler's medical records to the company's own internal documents.

HealthAmerica's Kendall Marcocci told me yesterday that the company won't comment on pending litigation. Center City attorney David Senoff, though, was happy to explain why he is representing the Van Nockers for free in the lawsuit.

"These companies have to be brought to the courthouse to get them to do the right thing," said Senoff, a specialist in insurance disputes. "This child needs this treatment, or else."

He didn't need to explain what "or else" meant.

Readers may recall that Kyler has neuroblastoma, a rare, deadly childhood cancer that attacks the nervous system, creating tumors throughout his body.

He was diagnosed in 2007 and endured a year of medical treatment, with complications he barely survived. Thankfully, it knocked his cancer into remission for 12 lovely months, and he got to revel once again in the glories of childhood.

Last September, the disease came roaring back. This time, only one form of treatment, something called MIBG therapy, could help save his life.

But HealthAmerica refused to pay for the MIBG, which it considers "investigational/experimental" because there is "inadequate evidence in the peer-reviewed published clinical literature regarding its effectiveness." Nor is MIBG approved by the Food and Drug Administration, another criterion that HealthAmerica requires.

How come, then, asks the lawsuit, HealthAmerica covered not one but two prior therapies for Kyler that did not possess these supposed requirements?

In April 2008, the company approved Kyler's use of a drug to treat a life-threatening blood-flow complication, even though the drug wasn't FDA-approved, wasn't manufactured in the United States and wasn't "peer-reviewed."

However, it was the only known drug to treat Kyler's condition, and he responded well to it. Four months later, HealthAmerica paid for another medication that wasn't FDA-approved for neuroblastoma treatment.

Again, Kyler responded well.

So why, pray tell, is HealthAmerica playing the "experimental therapy" card in the case of the MIBG treatment Kyler now needs? Gee, money couldn't have anything to do with the decision, could it?

In my December column, HealthAmerica's Marcocci was emphatic that her company declined Kyler's MIBG therapy not because of its cost but because of its experimental nature.

But that doesn't mean MIBG is ineffective.

"It's considered the standard of care in Europe and the United States for recurrent neuroblastoma," Kyler's oncologist, Stephan Grupp, told me then. "It's not an unproven treatment with no basis in medical science. Actually, the results are often very good."

Regardless of how you describe MIBG, one thing became clear last week when Paul and Maria got the results of Kyler's latest tests to track his neuroblastoma.

The MIBG is working.

Children's Hospital, where Kyler receives much of his care, proceeded with two rounds of MIBG therapy for Kyler - at a cost of $110,000 - despite the VanNockers' inability to pay for it. (CHOP hopes that HealthAmerica will reconsider or that Medicaid will cover the MIBG cost; the VanNockers are Medicaid-eligible because they are bankrupt by medical costs).

"He's doing phenomenal," said Paul, noting that some of Kyler's many tumors have disappeared; others have shrunk in size and density. Kyler's improved condition now makes him eligible for treatment less toxic to his overall system than the "big guns" of MIBG.

That doesn't mean Kyler is out of the woods. His serious diagnosis ensures that his prognosis will always be uncertain.

But for now, because his internationally renowned neuroblastoma doctors, not his insurance company, is making the medical decisions, Kyler might make it to his sixth birthday in November.

E-mail or call 215-854-2217. For recent columns: Read Ronnie's blog at http://go.philly. com/ronnieblog.