They want the same care the government offers
PRICE: If only their family had been poorer
| Saturday, Sep 19 2009 03:04 PM
Last Updated Saturday, Sep 19 2009 03:06 PM
Two-year-olds can be feisty, but Garrett Hutchins' screaming jags clearly weren't tantrums. Something was wrong.
But what? His parents, Katie and Ken Hutchins, got an array of diagnoses. Autism, one doctor surmised. Seizures of undetermined origin, another suggested. Migraines, offered a third, who then proceeded to send them home with this admonition: "Stop letting him have chocolate." When Garrett developed an unexplained black eye, office staffers did the logical and proper thing, asking about a possible fall, with CPS no doubt close at hand on speed-dial.
"They were looking for red flags," Katie Hutchins said. "Totally understandable. But I knew it wasn't a fall. He was my little shadow around the house. That kid doesn't leave my sight."
Garrett's unexplained pain, and the screaming episodes, continued. Finally, the Hutchinses got a diagnosis that made sense, even if it was the last one they wanted to hear. An inner-cranial tumor had broken some blood vessels, causing that black eye. Garrett had cancer -- neuroblastoma, stage four.
That was April. In May, the Hutchinses checked in at City of Hope, a Los Angeles-area research hospital renowned for its cancer treatment facilities. The boy's doctors recommended a relatively new procedure involving not one but two autotransplants sometimes referred to as a stem-cell rescue. In preparation, Garrett started a daunting new regimen of chemotherapy.
But on Sept. 1 the family's insurance provider, American Administrative Group, which regulates care for Kern County employees through Bakersfield-based Managed Care Systems/ GEMCare Medical Group, declined to cover the tandem transplant, deeming it "investigational and/or experimental." Garrett's cancer had already metastasized from his abdomen to his bone marrow and to several places on his skull, so there wasn't enough time to appeal. The Hutchinses were forced to move forward with the single stem-cell transplant that Managed Care Systems had authorized; he had the surgery Sept. 9.
The realization that they'd have to settle for something less than what the doctors recommended was difficult enough. But then the Hutchinses discovered a frustrating footnote that convinced them the American system of health care management has at least one serious hole: If they'd been poor enough to qualify for Medi-Cal, according to their City of Hope case coordinator, the experimental regimen their insurance provider had rejected would have been authorized without a problem.
"I was angry, just really, really angry," said Katie Hutchins, who was a dispatcher for the Kern County Fire Department for seven years before quitting to stay at home with Garrett. She and husband Ken, a physician assistant at Kern Medical Center whom she met when they both worked as EMTs for Golden Empire Ambulance, have two other children: Rileigh, 11, and Joseph, 8.
It wasn't the first time during this journey they'd been told they would be better off if Ken were to quit his job: If their family income had been substantially lower, they would have qualified for several types of secondary assistance. But this was the first time they'd been told Garrett's medical care would be affected, that there was a penalty for self-reliance. It was the first time they'd felt the limitations of their health insurance so personally.
Dr. Glenn Singer of Managed Care Systems, speaking generally about policy limitations, said that adjusters "go off published guidelines that are as up to date as possible ... so no one has to start at Square One, so you do things that are tried and proven." The age and condition of the patient is a consideration, he said. So, too, is the facility in question -- and "City of Hope is doing wonderful things," he noted.
But informed that a City of Hope coordinator had mentioned the advantages of government coverage when it comes to experimental care, Singer added: "It's really sad, really unfortunate, when City of Hope starts pointing fingers, using patients to drive wedges."
GEMCare CEO Robert Severs noted in an email sent late Friday that the hospital's authorization request referred to "a clinical trial," which is specifically excluded under the County Of Kern Self-Funded Plan, which his company adminsters.
"Be not mistaken, we have all the sympathy and empathy in the world for this child and family, however, almost universally all health plans do not cover clinical trials and the County of Kern is no exception. If we are guilty of anything it is following the rules," Severs wrote.
Although the tandem transplant procedure, which involves a significantly different technique than simply repeating the single transplant, is still classified as experimental, Garrett's physicians from Children's Oncology Group are reporting encouraging results. And overall, COG, a group of more than 2,000 multi-specialty cancer physicians, says it has seen astounding increases in the cancer cure rate for children treated at COG member hospitals such as City of Hope: from less than 10 percent in the 1950s to nearly 80 percent at present.
Garrett's recovery is all that matters to the Hutchinses, but this financial battle will stay with them.
"If, in time, we are faced with a relapse situation, we will never know if two transplants would have prevented it from happening, but we will always have the doubt, that feeling of 'what if?'" Katie said.
More than 50 percent of children diagnosed with neuroblastoma will relapse, and the cancer tends to come back more aggressively; many will die.
"It sickens me to think that an insurance company can dictate what sort of care my son will receive, that they can refuse to pay for something 'investigational' for a disease with no cure and such abysmal long-term survival rates," Katie said. "It sickens me further to know that he would be receiving more extensive treatment if we were on government assistance, that he was punished by our decision to have a job" that elevates them to the middle class.
The Hutchinses believe private insurance companies must start covering experimental treatments such as those provided by organizations like Children's Oncology Group, as reputable a group as they come.
For now, the Hutchineses watch, wait, hope and pray. They know the Pasadena freeway quite well now; someone is always at Garrett's side. Husband and wife trade off, so they've become like ships passing in the antiseptic halls. And the boy continues to improve.
Garrett (who turns 3 on Jan. 19) should be discharged in two months. Next week the Hutchinses move into the Villages, special campus housing for families at City of Hope, to wait things out. Their insurance will pick up the $65-per-night tab.
To follow Garrett's progress, visit www.carepages.com/carepages/PancakesForDinner.
E-mail Robert Price at rprice@bakersfield.com.
