SEATTLE - A local physicians group is taking on the insurance industry.
They're especially angered by the death of a young woman who may have lived if she got the right medicine in time. The case exposes broad problems that could affect your insurance coverage.
Chanel Bunce was a senior at Auburn High School, where the developmentally disabled 18-year-old had some rough times fitting in. Then came perhaps the biggest night of her young life.
For homecoming of 2008, a boy asked her on her first date.
"She said she felt normal for once," said Lanita Bunce, her mother. "She said she felt like Cinderella."
But it wasn't long after that glittery night that Chanel started to feel sick.
"She told the doctors her joints were hurting her," Lanita said. "I thought to myself how can her joints be hurting her? She's only 18."
After repeated visits to the nearby hospital, Chanel was diagnosed with a rare inflammatory disease known as "Stills."
She ended up in the hands of Dr. Gregory Gardner, one of the most respected rheumatologists on the West Coast, who prescribed a drug called Kineret.
"They said they submitted it to the insurance and the insurance denied it," Bunce said.
Regence Blue Shield, which insures Lanita Bunce through her Boeing employment, called Kineret an "investigational" treatment that was not covered.
In e-mails to KING 5, two of Chanel's treating physicians said the drug is known in rheumatology circles for effective treatment of specific cases like Chanel's.
After three weeks of insurance denials, Chanel took a turn neither her doctors nor insurers could have predicted. Several major organs failed.
Her physicians started her on Kineret without insurance. It helped, but not enough.
"If Chanel had it three weeks earlier we might not be where we are today," Lanita said. "And because of it - had she had it - she might still be alive."
Chanel's death at the University of Washington touched a raw nerve in the rheumatology community, where doctors say insurers routinely gamble with patient health.
Dr. Jeff Peterson heads the Alliance of Rheumatologists in Washington state.
"Every year at our meeting this is the number one topic," he said. "Every day my nurses are dealing with patients not being able to access medications to treat these severe and in some cases life-threatening illnesses."
A new generation of expensive drugs -- including Kineret -- can save rheumatology patients from lifelong, crippling illness. Peterson says insurance companies have targeted costly drugs that patients may need for the rest of their lives.
"If they can keep the patient from getting these medications for one month, it saves them $1,500," Peterson said. "If they delay or deny enough cases it could be millions of dollars very quarter."
"Every day my nurses are dealing with patients not being able to access medications to treat these severe and in some cases life-threatening illnesses." -Dr. Jeff Peterson Alliance of Rheumatologists
Chris Grant got a prescription for a drug that worked well in the past to control his inflammatory disease.
But this time, his insurer denied coverage for six months, during which his right eye started bulging and other painful symptoms flared up.
"I was confused," Grant said. "I don't know why they would want to prolong my suffering when this drug has worked for me before."
Peterson says rheumatologists in Washington and Oregon are so outraged by these delay tactics they've begun collecting data to draw up insurance company "report cards."
"We're gonna publish that data and we're gonna rank the insurance companies like they rank doctors," Peterson said.
Sean Karbowicz is a doctor of pharmacy at Regence Blue Shield who signed the rejection letter for Chanel Bunce's coverage of Kineret.
"The scientific evidence around Still's Disease is still evolving," Karbowicz said.
Karbowicz says there are still many scientific questions to be answered about the use and effectiveness of some of the new drugs, and all insurers have a duty to control costs.
"We first evaluate a medication and look for reliable scientific evidence that it has proven value," he said. "We do want to cover prescription medication that has been proven to be effective and is safe for our patients."
By law insurers can't reject a medication just because it isn't FDA approved. They have to consider other evidence as well.
Specialists say their expertise provides that evidence, but their treatment plans can't work if medicine isn't delivered on time.
"You would always fight for your kid," Lanita said."This was one fight I didn't know what to do. So I feel like I let her down."
More: about Stills Disease. And watch to go behind the scenes and find out why we did this story.