Noah's legacy: Bill on Schweitzer's desk would give families help to pay for expensive prescriptions
Noah's legacy: Bill on Schweitzer's desk would give families help to pay for expensive prescriptions

It took an entire community to pay the health care costs of one sick, insured, middle-class person named Noah Ginnings.

Now, the whole state is taking notice.

On the governor's desk is Senate Bill 133, which aims to bring a little financial relief to families during troubled times. The bill would help people who have jobs and health insurance afford prescription drugs in times of serious medical illness.

For years, the Ginnings family struggled to pay thousands of dollars each month in prescription drugs for their son, Noah, who died in November after an eight-year battle with brain cancer. Until the State Auditor's Office stepped in to help, the family paid the full amount at the pharmacy and was getting reimbursed later for a portion of the cost.

SB133 changes the reimbursement process.

Because Noah was a well-known 26-year-old with a radiant personality who enriched the lives of many, it only made sense to honor him in a way that helps others, said University of Montana law student Charlie Cromwell, a close friend and the author of SB133.

"It started off as a light bulb going off in my head, but because Noah was so amazing," Cromwell said, "to honor him - everyone jumped for it."

Since 2001, caring for Noah was Deb Chittick's full-time job. Six hours a day, Noah's mother researched medications and doctors on the Internet, inquired about prescription-drug assistance programs and filled out piles of insurance forms. Reaching an actual human being by telephone is half the battle when dealing with drug companies, she said.

"I wasn't willing to take no for an answer," she said. "You have to learn to be assertive and it's not an easy time for a mother to do that."

The family insisted their son receive top-rate drugs no matter how many drug companies insisted their middle-class income couldn't afford the bills.

"I found myself saying again and again: 'Why do I feel like a criminal? It's not a crime to be middle class,' " she said.

Chittick visited the pharmacy twice a week. Noah took 10 pills daily.

A 10-day dose of anti-seizure medicine cost $300. Five days' worth of anti-nausea medication cost about $600. Chemotherapy in the form of a pill cost $3,600 per month.

At one point, the prescription drug bill hit $6,000 a month. None of that included the surgeries and trips to Seattle to see the neuro-oncologist.

"As soon as you find out you have cancer, you might as well just empty out your wallet," Chittick said.

It means no vacations or eating out. It means sometimes paying the utility bills late and relying heavily on credit cards.

Luckily, the Ginningses had the support of the community behind them. It took the generosity of many organizations and individuals in Missoula raising $40,000 to cover the health care costs of one sick, insured, middle-class person.

Noah was a UM student, working toward a degree in education. He was insured through the university, which contracts with Blue Cross Blue Shield. The plan paid 70 percent of the student's medical costs after a $600 premium and a $250 deductible.

Except, every time Chittick went to the pharmacy, she paid 100 percent of the cost of Noah's prescription drugs, and then submitted receipts to Blue Cross Blue Shield for reimbursement.

Fronting the entire cost, instead of paying their 30 percent share, was a financial strain on the family.

Eventually, the State Auditor's Office got involved, contacting Blue Cross Blue Shield and working out a deal that allowed the family to only pay the co-payment for each prescription drug purchase.

The family's never been mad at Blue Cross Blue Shield, Chittick said. In fact, they were grateful Noah had insurance. It's just that they couldn't financially keep up the way the policy was written.

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Doctors gave Noah a terminal diagnosis last September.

"I began thinking of ways to honor his legacy and help people in similar circumstances avoid unnecessary trauma," Cromwell said.

At the time, Cromwell was enrolled in a legislative writing class that required each law student to write a bill for submission to the Montana Legislature. Though Cromwell had already chosen a bill dealing with health insurance benefits for veterans, he wrote a second one that codified the actions of the State Auditor's Office for the Ginnings family.

The bill allows people with health insurance, who have met their deductible, to pay only their co-payment for prescription drugs at the pharmacy, as opposed to footing the entire cost and waiting for reimbursement from their insurance company.

During the February hearing before the House Business and Labor Committee, the insurance lobby voiced strong opposition.

The bill wound up dying because of a technicality. But thanks to the State Auditor's Office, the language was scooped up and stuffed into a routine housekeeping bill, which clarified language in the state's insurance laws.

"If we can do this small thing to help people access the benefits that they have paid for then that's what we are here for," said Jessica Rhoades, spokeswoman for State Auditor Monica Lindeen.

With the addition of a small amendment, the bill even earned the praise of insurance lobby.

"It's the right thing to do," said Frank Cote, of Blue Cross Blue Shield. "It helps the consumer. Over time as systems evolve, it will be much easier to determine what that person will owe at the time of purchase."

Now SB133 needs only the governor's signature to become law. Its passage, however, will be bittersweet for the Ginningses.

"What would make me happy is if Noah hadn't been diagnosed with brain cancer and died. But this bill makes me intensely proud of us," Chittick said. "Look what we can do if we talk together."

Reporter Chelsi Moy can be reached at 523-5260 or at chelsi.moy@ missoulian.com.

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