Insurance slow to 'catch up' with cancer drug as Utah man runs out of time
(KUTV) To look at 52-year-old Mark Wilson, actively keeping up with the high school baseball players he coaches, you'd never know that cancer is tearing his body apart.
“It's a sarcoma,” Wilson said. “I was diagnosed with it in October of 1999."
He has survived thanks to a strong disposition as well as the strong work of his doctors and nurses.
"I went through a major surgery, went through 36 rounds of radiation, three months of chemo."
The treatments haven’t worked. Nearly two decades later, Wilson finds himself regularly up at the Huntsman Cancer Institute in Salt Lake City having tumors removed, and not just from his leg. The aggressive cancer has spread to his chest and arm.
Worse, he can't have any more of the "standard" cancer treatments. Any more chemo or radiation and they will kill him, his doctor's say.
But in the past year, there has been a breakthrough. Doctors figured out exactly what kind of cancer mark has.
"It's actually called the CDK4 genetic mutation," Wilson said.
And even better news: there is a drug that has been known to kill CDK4 cancer cells. In fact, the drug has been through trials and is FDA approved.
Wilson’s doctor wrote him a prescription for the drug, but his insurance company has repeatedly denied payment for it.
"The insurance company won't approve it. They keep denying it saying that, right now, it's a drug that's only approved for liver cancer and breast cancer."
Those are liver and breast cancers that have CDK4 mutations, but not sarcomas with the same genetic markers.
With a note from his doctor warning that, without the drug, Wilson is likely to die, he said he has appealed the denial, but to no avail.
And with the drug costing about $12,000 per month, it's something he can't afford to pay himself.
"It's frustrating,” Wilson said. “You start to wonder who is actually making the decisions at the insurance company. Are they looking at a bottom line?"
Joan Collett is a nurse practitioner at the Huntsman Cancer Institute and has worked with Wilson for several years. She said she was frustrated but not surprised when the claims were denied.
Collett said that it is regularly a fight, because insurance companies often don't really understand recent advancements in fighting cancer that identify genomes in the cancer cells and use targeted drugs to fight the cancer.
"We would like to see the insurance companies, in the next few years, sort of catch up with the new technology and the new way of treating cancer," she said.
In the meantime, it's people like Wilson who often have to wait.
"That is the frustration; they are on borrowed time," she said.
And, Collett said, the drug Mark was prescribed absolutely ought to be approved based on the genome science.
"I am very hopeful that it will work," she said.
Huntsman Cancer went to bat for Wilson. Clinical researcher David Stenehjem gathered as much data as he could find on the cancer as well as the drug. When Wilson had his latest appeal, Huntsman Cancer was on the call, too. That seemed to do the trick and the insurance company decided to approve Wilson for the drug for three months so they can determine whether or not it is working for him.
Wilson’s insurance company is Select Health. The company’s change of heart to cover the drug came shortly after Get Gephardt’s initial calls to the insurance company. But Select Health Strategic Communications Manager Jamee Wright was quick to note that the timing was a coincidence.
"Select Health was already examining the details of Mr. Wilson's rare disease and related therapies before receiving your inquiry, and your involvement did not influence our clinical decisions," Wright stated in an email.
As for why Select Health ultimately relented on the denial, Wright stated the decision was made "after thorough deliberation."
Wilson's fight against cancer goes on, but he has his fingers crossed that the drug he is now taking helps him beat it once and for all. He said that, after about six weeks taking the drug, he and his doctors are optimistic that it's working. Since getting approved and on the medication, several current tumors has stopped growing and no new tumors have popped up.
“I have three boys. You want to watch them grow up. You want to watch them have families. You want to know your grandkids.”