A friend In need of Help

I know this is not colorectal cancer related, but I know there are many smart people here with resources. My friends three-year-old son has been diagnosed with cancer and is having issues with his insurance company, which will ultimately play out in his son's possible recovery. I understand that it is long, but please read his letter and post if you have any way to help. Thank you.

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Kyler VanNocker is a three year old who was diagnosed with stage 4 neuroblastoma in early July 2007. To date he has been receiving treatment, based on the latest protocol, at St. Christopher's Hospital for Children in Philadelphia, PA.

Protocol calls for 6 rounds of intensive chemotherapy, Aphaeresis to collect stem cells for use in later bone marrow transplants, surgery to remove the primary tumor, tandem Autologous Stem Cell Transplants, radiation therapy, followed by additional treatments as prescribed by his doctors.

After 6 months of being treated at St. Christopher's and literally days before he was scheduled to begin the most aggressive portion of his treatments, Tandem Autologous bone marrow transplant, we were informed by Coventry Health Care, that his transplants would not be allowed to occur by his primary physicians nor at St. Christopher's. The insurance company, while having a specialist who was in charge of over seeing and coordinating Kyler's care between St. Christopher's and Coventry Health Care, knowing exactly which protocol he was under, failed to mention during that 6 month period that Coventry Health Care required bone marrow transplants to be conducted at their approved “centers of excellence.”

Coventry Health Cares listed “centers of excellence,” are without question some of the finest facilities in the country, if not the world. Coventry Health Care is not stating that Kyler cannot have the bone marrow transplants, the issue becomes much more involved than that.

To begin with, Kyler is a very sick and scared 3 year old child. He is now being asked to walk away from Doctors, Nurses, and Child Life Specialists all whom he has taken months to learn to trust. A group of professionals who have taken care of him through nights of throwing up, fevers, infections, and countless other complications. Being asked to surrender this imperative therapeutic bond, for a 3 year old is not a small feat. Such abandonment may lead to a devastating recovery.

Kyler's transplants were scheduled to begin Jan. 14, 2008. His family was informed on Jan. 4, 2008, via phone message, that St. Christopher's would not be allowed to preform the transplant; an eleventh hour decision made by the insurance company. We have exhausted all three levels of appeal available to us. Each of those appeals were reviewed on a contractual basis with the simple ruling, St. Christopher's is not a listed “center of excellence.”

Neuroblastoma is an extremely aggressive and resilient cancer. If treatments are delayed by days, let alone weeks, that cancer can return. If that occurs Kyler's chances of survival drop from an already dismal 33% to almost nothing. Such a delay is forced upon Kyler due to the “centers of excellence” not being ready. They do not have his medical records, they do not know his background, and more importantly, the earliest entry we may be able to get would delay the start of transplant by a minimum of two weeks.

In addition to the delay, there is a second issue involving the treatment he would receive. Because of how on going studies work, Kyler is considered “off study.” He was diagnosed during the 90 day “hold” period between studies. This means at Coventry's “center's of excellence,” he would only be treated with a single bone marrow transplant, not the tandem that his doctors feel offer his best chance at survival.

Coventry's denial of St. Christopher's treatment creates a dangerous situation.

1.Reducing Kyler's chances by taking away health care professionals that he knows and trusts.
2.Delaying the start of his transplants.
3.Changing the very nature of his transplants from a tandem to a single.

How can anyone attempt to say that Coventry Health Cares decision is in the best interest of Kyler?

We are not even in a position to do the diligence required to make an informed decision as to which of Coventry Health Cares “centers of excellence” would be best suited to care for our child. Meet with the doctors, allow them to review his case file, meet with nurses, staff, take a look at the facilities, or even make arrangements for Kyler's two young siblings if traveling out of the local area was required.

Kyler's parents and Doctors, are being told that they are no longer the major decision makers for his well-being. It has now become a decision of economics masqueraded by Coventry Health as a decision made in the best interest of the child.

Kyler's very survival has been placed in jeopardy because Coventry Health Cares Pediatric Oncology specialist failed to do their job. They were aware of his disease, knew the protocols being used to treat him, approved and paid for Aphaeresis, the start of Autologous stem cell transplant, knew that he was being treated at St. Christopher's, yet failed to mention that those transplants would not be allowed to occur there, until it was too late.

During an appeal meeting with Coventry Health Care absolute concessions were made by St. Christopher's. An offer was made to perform the transplants at rates below traditional costs. We,the parents offered to sign a waiver of liability, to the insurance company, for our decision to have the transplants preformed at St. Christopher's. Those offers were dismissed without discussion.

As Kyler's parents, we are so convinced that his best chances of survival are with St. Christopher's Hospital for Children and specifically with his Doctors Halligan and Rozans, that we have made arrangements for these transplants to occur, on schedule and at personal expense. We cannot fathom the fact that we have been forced by Coventry Health Care to assign a monetary value to Kyler's survival do to Coventry's gross delay.

As the ink dries the third, and final appeal decision was made. Another based solely on contractual review, ruled in favor of Coventry Health Care. Perhaps what is most disturbing about this decision is the actions taken by a Coventry representative on Friday Jan. 11. Please indulge me for another paragraph or two.

While at St. Christopher's and making arrangements to self pay for our son's transplants, we received a phone call from the insurance company informing us that Coventry had chosen one of the preapproved “centers of excellence,” and had scheduled an appointment for Monday morning. Coventry had previously been advised that Kyler already had an appointment scheduled for that time with his doctors to perform tests to make sure it was safe to proceed with transplant. The insurance company was aware that Kyler's doctors were already in contact with the preapproved physicians, who are currently on vacation, and that since Kyler is off protocol he would only be receiving a single bone marrow transplant at the “center of excellence” rather then the proposed tandem transplant. It was further stated that if we did not make the meeting we would be the ones delaying the timely start of his transplants.

What was relayed to the State reviewer was that we had chosen to delay the start, and that a tandem transplant was available at Coventry's preapproved hospital. We were fully aware that this review was looked at from a contractual basis, and expected to lose this appeal. However, to be subject to such a sordid act by Coventry leaves us speechless.

For us our decision to pay for, and have Kyler's transplants at St. Christopher's had been made throughout the endless months of treatments already undergone with the doctors and staff at St. Christopher's. Doctors Halligan and Rozans have earned our trust during that time. Demanding that we give up our trust based on a financial decision would be like asking us to surrender our faith for a sack of coins. For others the fact that such mistakes can be made and total disregard for a child's survival should be concerning.

Paul & Maria VanNocker
pvn001@comcast.net