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Studies from several Triangle researchers show challenges for patients.

By Stephanie Soucheray

It’s the ultimate rubbing of salt in the proverbial wound: A cancer diagnosis leads to a treatment that could save your life, but paying for that treatment could cost you thousands of dollars in out-of-pocket expenses each month that your insurance doesn’t cover.

“Every five days, I was paying $397 for my chemo pills,” said Chris Tribble.

Eighteen months ago, the 39-year-old from Statesville was diagnosed with stage III colorectal cancer, which had spread to his liver. He traveled to Duke to get treatment with Yousef Zafar, but the chemotherapy pills prescribed to Tribble were too expensive.

UNC associate professor Stacie Duzetzina.
UNC associate professor Stacie Duzetzina. Image courtesy UNC.

Unfortunately, this scenario is familiar to thousands of Americans each year who abandon their cancer treatment plans because they simply can’t afford it.

According to a new study co-authored by UNC-Chapel Hill professor of public health policy Stacie Dusetzina and published last week in the Journal of Clinical Oncology, up to 16 percent of cancer patients quit their treatment plans because they can’t afford the costs of expensive but life-saving oral chemotherapy.

“A percentage of people are quitting their treatments and medications within the first six months,” said Dusetzina.

Her study looked at patient compliance and oral chemotherapy. Imatinib, a tyrosine kinase inhibitor (TKI), is one of the most successful stories in modern oncology.  Used in patients with chronic myeloid leukemia, the daily pill helps patients go from a life expectancy of five years to the life expectancy of their cancer-free peers.

“It’s a very amazing drug and can really give someone an almost normal lifespan,” said Dusetzina.

Dusetzina used an insurance-claims data source that creates a transaction whenever someone uses insurance benefits to pay for prescription drugs. She said she was surprised by a few things in the study.  On one hand, the median patient co-pay for their medicine was only $30 per month.

“We knew from other reports that the treatment was expensive, so we expected them to be paying more,” said Dusetzina. “That said, we were looking at privately insured people in large group health plans.”

The majority of subjects paid a reasonable co-pay each month. But 6 percent of people in the study paid more than $500 a month; for a drug that’s prescribed indefinitely, that cost led to people quitting their therapies. Seventeen percent of patients with higher co-payments quit taking their medications in the first six months. More surprising was the finding that 10 percent of patients with lower out-of-pocket costs also stopped taking their medications in the first six months.

Duke University oncologist Yousef Zafar.
Duke University oncologist Yousef Zafar. Image courtesy Duke Medicine.

“I think the biggest point of the study is that out-of-pocket costs have huge impact on patients to take their prescriptions – impact the ability to take their treatments,” said Dusetzina.

That impact on patient adherence is something Zafar, a medical oncologist, thinks about in his practice.

“I’m frequently seeing more and more insured patients having more problems paying,” he said. “There are occasions where I can substitute interventions to avoid out-of-pocket costs.”

Zafar completed a study last year that looked at these very questions.

“We asked patients about whether or not they talked to their doctor about costs,” he said. “Fifty percent said they had some desire to talk about costs, but only a small minority had the questions.”

One-third of patients said they wanted the best care for their cancer treatments and thought that bringing up cost could jeopardize their treatment. Others were embarrassed to bring up costs with their doctors, and others still said they did not think it was of any interest to the doctor.

At first, Tribble didn’t think Zafar would have any interest in the cost of his medicine. But when Zafar brought up costs, Tribble confessed the oral chemotherapy was too expensive for him.

Zafar offered Tribble the intravenous-fusion version of chemotherapy, which his insurance did cover.

“Differences in co-payments could impact long-term adherence to drugs,” said Zafar. “When we think of health care costs, we think of big numbers, numbers in the millions and trillions. But small differences in costs impact lives and outcomes.”

As of the first of the year, Tribble was cancer free, and he’s glad he spoke openly with Zafar about keeping his treatment costs down.

“The first step is that it’s OK to talk about costs with doctors,” said Zafar. “We want to know what our patients are experiencing.”

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