Friday, October 14, 2005
Hope turns to anger
Refusal to pay for treatment shows power insurance companies wield
If you can measure a man by the number of people who try to save him from cancer, Jack Cawley represents a life well spent.
The 63-year-old Bedford County rancher has received help from doctors in two states, an insurance company and the municipality for which he worked 25 years as a deputy sheriff. His former boss, Roanoke County Sheriff Gerald Holt, complained to the governor about a medication-coverage dispute, and one medical specialist pitched the dispute story to "60 Minutes."
In spite of those efforts, Cawley's wife, Ann, said Thursday she thinks she is losing him.
Cawley's brain-cancer ordeal, spread over five tension-packed months, illustrates how cancer touches, and sometimes wrenches, all those who come in contact with it. That angst may spread from the patient and his family to the patient's boss and even distant bureaucrats who will never visit at bedside.
Thursday was cool and clear at Cawley's place in rural Jordantown, the kind of morning when Cawley, when he was healthy, would leave home early to work his herd of 100 head or more of cattle. A retired deputy sheriff who took up ranching after leaving the force, he took care of five farms. Headaches, then a fall at a livestock auction last spring, were the earliest signs of Cawley's illness. Within weeks, he had two biopsies and surgery. It was followed by radiation and chemotherapy, but the tumor grew back. It is a mass inside the back of his head with spider leg-like tentacles running toward the front of his head, Ann Cawley said.
Last month, jittery hope turned to distress and anger when WellPoint Inc.'s Virginia-based Anthem Blue Cross and Blue Shield denied Cawley's request for a special cancer drug, called Gleevec, that costs more than $6,000 a month. They thought then the drug might save him, Ann Cawley said Thursday. When the insurance company declined to pay for it, the news hit with devastating effect.
Cawley's retiree benefits include health coverage through Anthem, and the plan had covered perhaps $100,000 worth of care and other treatments, she said. But Anthem declined to pay for the Gleevec, made by Novartis Pharmaceuticals Corp., ruling that it was excluded as an experimental/investigative medication for which there was no applicable exception.
The bureaucratic blind alleys and cul de sacs traveled by the Cawleys seem like so much wasted effort now. They achieved little more than a high level of frustration by the end of phone calls that got nowhere and appeals that spawned considerable paperwork -- all of it seeming increasingly pointless as the patient's end draws near.
Still, for the record, Gleevec is approved by the Food and Drug Administration to treat cancers such as leukemia, but not glioblastoma multiforme, the rare brain carcinoma Cawley has. To cover the off-label use of a leukemia drug for glioblastoma, the insurer must believe the drug would help and be as safe as approved therapies for the disease, based on official summaries of medical literature known as compendiums. After reviewing all three compendiums that insurers are obligated to check under state law, Anthem ruled Gleevec wasn't covered for the specific application Cawley's doctor's envisioned, Anthem spokesman Scott Golden said.
Anthem administers the county's self-funded employee health plan, including the determination of what's covered and what's not for covered retirees. That process goes on deep inside the Richmond-based company, outside of public scrutiny unless the patient comes forth with a lawsuit.
So the Cawleys paid $6,291.45 for a monthly supply of Gleevec, Ann Cawley said. As they appealed the denial, hoping to change Anthem's position, they grappled with the possibility that huge unexpected drug bills would eliminate their savings.
"In 10 months, you're talking $60,000," she said.
One of Cawley's doctors, Henry Friedman, a brain tumor specialist at Duke Medical Center in Durham, N.C., called and spoke with Roanoke County Administrator Elmer Hodge. Friedman, clinical co-director of the hospital's neurooncology program, said in an interview that he argued the drug should be covered. He said he supplied a research article to be published in a medical journal to support the treatment strategy. Friedman said the drug had a 10 percent chance of helping Cawley, which made it worth trying.
Friedman said he also called and complained to "60 Minutes," hoping to interest the investigative news program in an expose about what he called an appalling gap in Roanoke County's employee health coverage. "We're going to make Roanoke County the example of all that's wrong with this kind of situation," Friedman said.
According to Friedman, it's not realistic for insurers to require sturdy proof in the medical literature of the effectiveness of experimental medical therapies that target rare diseases such as glioblastoma multiforme. Drug companies, and the medical researchers they support, seldom devote extensive study to the cure of rare diseases, because they would never sell enough of the drug produced from those studies to make a profit. Friedman said that when somebody comes down with a terminal illness, insurance should cover whatever drugs might help. County officials should have dipped into county coffers and paid for the Gleevec, and the fact that the county declined to do that should scare other county employees, he said.
County officials said they're contractually bound to honor Anthem's rulings and have never paid for care that Anthem had first declined to cover.
"We can't pick and choose where we want to go outside of the contract and where we work within the contract," said Joe Sgroi, the county's human resources director.
Not that county officials aren't sympathetic. "We have been working with them since the middle of September trying to help them through the process to the extent that we feel we can help them through it. We're just not comfortable overriding medical decisions when we are not medical experts," said Diane Hyatt, the county's chief financial officer.
On his own initiative, Holt, the Roanoke County sheriff, took up the matter, writing to Gov. Mark Warner, corporate regulators and state lawmakers to question why Anthem had not covered prescribed care.
Holt said in an interview that he was "shocked" to learn that a deputy with a record of public service had to pay out-of-pocket for an expensive drug that his brain specialist prescribed. Holt said even uninsured jail inmates get the medical care they need. He said he knows, because he runs the jail.
"Why wouldn't our public servants be treated equal to that of a prisoner?" he asked.
But the controversy was short-lived. Cawley stopped taking Gleevec after a month because it wasn't helping. Hospice, care for the imminently terminal, may soon be called.
At home Thursday morning, Cawley was, by mandate of his disease, curled up on his couch. His trusty black pickup, bearing the tag "FARM USE," was parked outside. His large, strong hands rested idly beneath his blanket.
Not long ago, his wife and children drove him to a farm to see one of his herds. "He was so weak, he didn't even pay any attention to the cows," Ann Cawley said.




