Surviving cancer, surviving the bills

Noah Ginnings is 15 minutes late for an interview.

He sits down, smiles warmly and apologizes. He’s 24 years old, and it’s been five and a half years since the surgery removed 90 percent of the tumor and the entire right temporal lobe of his brain. The grand mal seizures stopped a year ago, but the petit mals still come about twice a week. He had one before he came.

You get really focused, he says. All your senses are flying. Your hands and face and feet go numb. You get really forgetful. And then it’s fine. Kind of.

Noah’s hand is wrapped in a bandage from an injury the other day when he had a seizure at the gym and fell off the treadmill.

“I’ve learned to wear the clip,” he says, and laughs.

In January 2001, Noah was on an ice-fishing trip with his friends at Placid Lake, when, while sleeping, he was hit with a grand mal seizure that shook him so hard he almost took the bunk beds apart. His friends rushed him home to Missoula and he went in for a CT scan at Community Medical Center.

The radiologists found a branched tumor in Noah’s brain. They decided to operate. But before they did, Dr. Richard Day, the surgeon, gave a quiet warning to the family: “Brain surgery is never a sure deal.”

So, the night before his surgery, Noah had three of his best childhood friends over. Just to be with them–and say whatever goodbyes might be necessary. It was a moving night. “That was the first time I’d seen them cry,” Noah said.

In a 12-hour surgery, Dr. Day removed the right temporal lobe of Noah’s brain and most of the tumor within it. But part of it had to be left. One branch of the tumor was too close to Noah’s optic nerve to touch. Other sections were rooted in sensitive areas that control speech and motor skills. Though its grip was loosened, the tumor remained.

Now Noah was left to function, as his mother says, on four-fifths of a brain. 

Nevertheless, three and a half weeks later, Noah was back at the University of Montana, enrolled in dance classes and pursuing his major in elementary education.
Two years went by before neurologists discovered Noah’s tumor was growing back. He started radiation therapy to inhibit its growth.

“I actually would go from class to radiation, and I would come back and play basketball, and my hair would be falling out.”

People would ask him what was going on, but he would just laugh it off. Cancer makes people feel bad, he says.

“I don’t want to be the kid on the jar that you look at and say, ‘Oh, poor him,’ and put money in the jar.”

Noah’s just sore that he can’t do what he likes. After doctors found more tumor growth and renewed bleeding in his brain this August, he has to go through chemotherapy and be extremely cautious with his head. That means no swimming, no weightlifting and, worst of all, no basketball.

“I’m a fairly active person,” Noah admits. Anyone who knows him would laugh at the understatement. Noah is an Advocate, a disc jockey, a dancer, a singer and an avid Griz fan of all sports. He has a role in an upcoming Missoula Children’s Theater production of the musical “Cats.”

Sitting in the University Center with Noah, it’s easy to see how engaged he is. At intervals, he pauses to say hello to friends walking by.

Hey, what’s up?
Why haven’t you called me? 
How is everything? 

Then, always respectful, he turns back to the conversation at hand. Noah doesn’t ask for much in the way of sympathy. 

“I’m not going to introduce myself as ‘Hi I’m Noah, with brain cancer,’ but I’m also not going to shy away from it,” he said.

Unfortunately, the cancer is not all Noah has to worry about. There are the medical bills, the insurance companies and the pharmaceutical companies. It costs money to have cancer in this country, and Noah and his family are finding out just how complicated that can be. 

Noah chokes up when he talks about his mother battling to keep her son away from financial stress and as much in a normal 24-year-old’s life as brain cancer will allow. 

“My mom is the greatest,” Noah says. “I’ve always been a momma’s boy, but she’s my hero.”

Deb Chittick, Noah’s mother, spends much of the day on the phone wrangling with insurance and pharmaceutical companies to find ways to pay her son’s exorbitant medical bills.

Now in his sixth year here, Noah is on UM’s Blue Cross Blue Shield student insurance plan. The plan promises to pay 70 percent of a student’s medical expenses after a $611.50 premium and a $250 deductible are met. But when Noah buys his medicines, he has to pay for them outright, then send a claim in to Blue Cross Blue Shield, and then wait for the insurance company to return him the agreed 70 percent.

“We’ve talked to them on the phone,” Noah says. “I mean they’re insurance companies, they try to dodge it as much as they can.”

The catch is Blue Cross Blue Shield’s irregularity in their reimbursements — “Sometimes we get it in a week, sometimes it’s a month,” Noah says — and finding the money to pay for a prescription of anti-seizure medicines or a session of chemotherapy is often a struggle. 

Noah takes 18 pills on a daily basis, excluding those he takes with the chemotherapy he started in August.

There’s Keppra, an anti-seizure medicine, $300 for a 10-day regimen. And Lyrica, $275 for 10 days. And the anti-nausea pill, which keeps him from throwing up hundreds of dollars worth of medicine, runs $620 for five days.

And the Ativan and Temodar that are part of Noah’s chemotherapy? They cost about $3,500 per month, depending on the pharmacy distributing them. The chemotherapy will take six months to complete.

Add this to the cost of trips every three months to Noah’s neuro-oncologist in Seattle, and you have a medical financial nightmare that is Noah’s family’s present reality.

Noah’s mother, Deb, relies on her husband, family and close friends for the money to pay her son’s bills.

She says that while there are government and non-profit programs designed to help the young and the elderly, Noah is of the age group that often falls through the cracks of a healthcare system. 

Deb says that often the bills in the mail are overwhelming.

“You completely freak out, that’s what you do,” she said. “And then you pick yourself up and say, ‘OK, we can do that, too.’”

A grassroots fundraising effort has risen around Noah and his family. Longtime friends Robin and Ken Wall have created a Web site, noahginnings.org, to coordinate donations and celebrate Noah’s impact on the Missoula community. 

“He has touched so many people,” says Vickie Mikelsons, a family friend who is helping organize fundraising for Noah’s medical bills. “He’s not someone that’s forgettable.”

The UM Advocates have also pooled their resources and raised $1,100 toward his expenses.

To Deb, it’s obvious there are serious gaps in Blue Cross Blue Shield’s student insurance plan. Sometimes the cost of Noah’s medicine is the equivalent of two mortgages.

“I don’t understand how any student can do that,” Deb said. “It’s not adequate for a student population …. These are all kids with ambition here – and we make it impossible for them to afford to do that.”

Rick Curtis, an insurance administrator at Curry Health Center, insists that for the cost and coverage, the Blue Cross Blue Shield student insurance plan at UM is one of the best deals around.

Curtis says that insurance companies cover individual client’s medical emergencies with the premiums everyone else pays. For UM students, those premiums have risen 22 percent in three years. But Curtis points out that if exceptional care were to be given to extraordinary circumstances, like Noah’s, everyone would be forced to pay more for services they may not be in need of.

“Insurance is designed to help,” Curtis says. “Insurance isn’t perfect … it’s like anything, there’s limited resources.

“I stay awake at night thinking, ‘How do I make this better?’ But you’re working with traditional, national systems,” Curtis said. 

Deb says her daily negotiations with Blue Cross Blue Shield and various pharmacies are quick to tire her. She is taking yoga classes to ease her stress. The rest of the time she is at home, trying to keep things as normal as they can be, especially for Noah’s 16-year-old sister, Liza.

She is frustrated with the vagueness and inconsistencies of insurance policies and the U.S. health care system.
“It’s always two steps forward and two steps back,” she said.

Through it all, however, Deb tries to remember that even behind the system, there are real people.

“It’s not political to me, it’s people to me,” she says. “Being a gentle, kind human being is really enough.”

She says her son’s optimism keeps her going.

“Noah reeks of potential,” she says. “We all follow his lead.”