DAILY NEWS: Kyler has neuroblastoma, a rare and deadly form of childhood cancer that attacks the nervous system, creating tumors throughout the body. Diagnosed at 2 1/2, he endured more than a year of treatment at both St. Christopher’s Hospital for Children and at Children’s Hospital of Philadelphia. […] 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.” […] 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.” MORE
RELATED: Thankfully, Kyler underwent two of the expensive radiation treatments at CHOP anyway – at a cost of $110,000, for which the financially bankrupt VanNockers are now responsible – and he responded very well to them. MORE