Danni Gilbert wants another season. She wants to see the leaves change, to return to Mountain Home High School to meet a new class of students, to possibly watch her 5- and 7-year-old daughters open presents under a Christmas tree or to blow out the candles on another birthday cake. But she needs some help.
Cancer has made its way into her 39-year-old lungs and liver. Her oncologist, Dr. Dan Zuckerman, knows what to do: administer a biweekly cocktail of chemotherapy complete with Avastin, a drug designed to rob a cancerous tumor of precious blood cells.
But Gilbert's insurance company, Blue Cross of Idaho, won't pay for the Avastin, ruling that the drug doesn't meet what it calls a "standard of care." So instead, Gilbert is faced with shelling out $3,300 every other week for a drug that her physician says is her best bet to prolong her life.
Several hours of interviews with Gilbert's family, friends and caregivers, as well as Blue Cross officials still left key questions unanswered, questions that revealed the greater dilemma of health care in America, no matter what your political leanings may be:
What good is cutting-edge medical care if it can't be paid for?
Who gets to be the final arbiter of how and when treatment is offered?
What is the value of life, no matter how short it may be?
Emotions ran high in a series of conversations in which Boise Weekly was given precedent-setting access to Gilbert's records at St. Luke's Mountain States Tumor Institute and the Meridian headquarters of Blue Cross of Idaho. What BW discovered was much more than a heartbreaking story of a wife, teacher and mother of two. Danni Gilbert is an everywoman who fears being asked to measure the quality of her life while others measure how long she will ultimately live.
"What do you want to do, babe?" asked James Gilbert on June 21.
Danni looked up at her high-school sweetheart, father of her two daughters and husband of 16 years. She was lying down in a MSTI treatment room as she and her husband awaited her biweekly chemo. The Gilberts and Zuckerman were set to proceed with her treatment, until a St. Luke's associate walked into the room with the news that Blue Cross had just denied payment for Avastin. The St. Luke's employee explained that Gilbert could pay $3,300 for the Avastin or refuse the treatment that Zuckerman was convinced would be her best hope.
"What do you want to do?" asked James.
Danni and James met in high school in Great Falls, Mont. James always wanted to be a teacher. After a brief but successful career in human resources, Danni eventually followed her husband's career path.
"Danni is always looking out for the little guy," said James. "And she's always going to bat for underprivileged kids."
When the Gilberts moved to Idaho in 1997, James took a teaching job in Mountain Home while Danni taught special education at Boise's Taft Elementary. In 1999, Danni also began working in Elmore County, teaching history, psychology and sociology at Mountain Home High School. James eventually became the assistant superintendent of the Mountain Home School District. Their two daughters were born in 2005 and 2007. Life was good.
"We've always been in pretty good shape, not fitness freaks but always active," said Danni. "In 2010, I wanted to compete in the City of Trees marathon so I started running. But after a mile or two, it was difficult to breathe and that's not like me."
One physician treated Danni for allergies. Another doctor thought it might be asthma. But a CT scan in September 2010 revealed a series of white pockets in her lungs, triggering a biopsy and, in short order, a diagnosis of stage-four colorectal cancer.
Danni was stunned but was immediately referred to MSTI and Zuckerman.
"Everybody says I have the best doctor available," she said.
"In many cases, patients diagnosed with stage-four cancer may die in the first six months. But my single goal is to help Danni live as long and as well as she possibly can," said Zuckerman, taking a long breath to consider his next statement. "But she knows what she faces. She has no illusions."
Zuckerman, a native of Boise, returned to his hometown to practice oncology after 16 years of education and training in Chicago and Boston. At any given time, he sees hundreds of patients at MSTI.
"I've treated thousands since I've been here," he said. "I currently have about 100 patients on active chemotherapy and hundreds more in their first five years following chemotherapy."
Zuckerman, married and a father of 5-,7- and 9-year-olds, spoke plainly but also experienced more than a few lumps in his throat while talking about his patient.
"She's a young, vibrant woman--married with kids about my age," he said, taking another long pause. "But she's fighting for her life. Who can fault a young woman with young kids in the prime of her life?"
Shortly after her diagnosis in September 2010, Zuckerman prescribed a chemotherapy regimen of something called Folfiri, a cocktail of drugs and vitamins, along with Avastin, which he said has shown great promise in the 21st century.
"In 2004, gold-standard evidence showed that Avastin was robbing tumors of blood vessels," he said. "That's a home run."
When BW asked Zuckerman what adding Avastin offered his patient, he took yet another long breath.
"Six months," he said. "Now, that may shock you as a layperson. But I must tell you that six months is a blockbuster. Avastin is not a cure but it is clearly a drug that could prolong life."
Initially, as a first-line treatment, Blue Cross agreed. In fact, the carrier approved payment for the full treatment. The Gilberts' policy requires $1,500 in annual individual deductible expenses.
"The treatment worked very well for Danni," remembered Zuckerman.
Danni's colorectal cancer abated but the disease made its way to her lung and liver. That's when Zuckerman began Folfox, a revised chemotherapy regimen for what would be formally labeled as a "second-line treatment," a regimen that did not include Avastin.
"Following what we knew and the base guidelines at the time, we didn't include Avastin," said Zuckerman.
But a meeting of the nation's top oncologists as recent as a month ago was a game-changer, according to Zuckerman, and new hope was on the horizon, or so he thought.
the Cutting-Edge Research
The annual meeting of the American Society of Clinical Oncologists, held in Chicago in early June, attracted more than 30,000 of America's physicians and cancer specialists. Zuckerman, an ASCO member, said the conference is traditionally a platform for the latest in cancer research.
"A presentation at ASCO revealed that Avastin was now having success in second-line treatment," he said. "This was huge. Needless to say, I was anxious to share the news with Danni but she had already read about it by the time I returned to Boise."
Zuckerman said a control trial had indicated that adding Avastin to the second line of treatment could prolong Danni's life.
"The median age of prolonged life was 1.4 months," he said.
While five weeks may not seem long to most, Zuckerman said Danni would not have the extra five weeks otherwise.
"And who knows where Danni is on the curve? Two months? Six more months? She was a strong, healthy woman before this diagnosis and that's important," he said but conceded that he was not talking about adding years to his patient's life.
But Zuckerman and Danni's hope for another season came to a halt on June 21 when Blue Cross said "no" to Avastin for second-line treatment.
Following Blue Cross' denial of Avastin as a second-line treatment, Danni's appeal letter to the insurance company was filled with grief.
"I was shocked but also determined to do everything in my power to fight this disease," wrote Danni. "Never in my wildest dreams did I think that part of this fight would be with my insurance provider."
Blue Cross officials were reluctant to talk to BW about her plight, but after Danni signed a HIPAA waiver, Karen Early, director of corporate communications, and Josh Jordan, corporate communications specialist, sat down for the better part of two hours to discuss what Early agreed was a "dreadful situation."
About 600,000 Idahoans carry Blue Cross of Idaho insurance cards in their wallet. Blue Cross is, by far, the Gem State's largest carrier, pulling in $1.6 billion in revenues in 2011. Ninety-six percent of Idaho's physicians are approved providers in Blue Cross' network, including Zuckerman, and 100 percent of Idaho's hospitals, including St. Luke's and MSTI, are also in the network.
When BW told Zuckerman about Blue Cross' acceptance for an interview, he had a request.
"I would ask them to let me do my job," Zuckerman told BW. "I'm not making things up. This is clear data. I just want to do my job."
But in response, Early said Blue Cross "had a job, too."
"Our job is to act in a way that facilitates hundreds of thousands of people to be able to afford their medical care," said Early. "It's our job to make sure that what we pay for has known therapeutic care."
Early revealed that Danni's appeal process had been bumped all the way up to Dr. Lance Coleman, Blue Cross' director of medicine, who denied her appeal.
Early said Coleman had determined that the standard of care, which according to Blue Cross didn't include Avastin for second-line treatment, had not been met.
"We've paid $350,000 for her care for the last two-and-a-half years. It's not as though Blue Cross hasn't provided coverage," she said. "We don't pay for experimental or investigational drugs."
But Avastin is neither experimental nor investigational. Blue Cross has approved its usage for hundreds of other Idaho cancer patients in first-line care. In fact, Danni's dilemma may come down to a life-or-death tug-of-war surrounding the words "or" and "and." Simply put, Avastin's prescription label recommends the drug's usage "for first- or second-line treatment."
"That says 'or,' not 'and,'" said Early. "And Dr. Zuckerman is asking for us to approve Avastin for first 'and' second line treatment."
If there is a glimmer of hope for Danni and her physician, it may come in new levels of appeals that Early revealed in BW's interview.
"We will offer Dr. Zuckerman and Danni the chance to sit down and talk with our Dr. Coleman," said Early. "Additionally, we'll pay for an independent review, outside of our organization, and we'll be bound by that decision. And we won't ask that Danni be bound by it in case she still wants to appeal. If an outside investigation reviews all the data and finds in her favor, we'll pay everything retroactively."
But as BW was going to press on July 18, Danni still faced another $3,300 out-of-pocket bill during her latest chemotherapy treatment. She has even consulted with an attorney about the possibility of divorcing her husband so as not to burden him and their children with mounting debt when she passes.
"This is so much more than Danni, more than St. Luke's, more than Blue Cross," said Zuckerman. "There are so many people who can't or won't bring this fight. I'm so privileged to take care of her. She's a remarkable woman."Read more on this story here.