Her doctor recommended this cancer drug. Her insurance company denied it | Opinion

Getting a cancer diagnosis is scary enough.

For Patricia Nilsson, her diagnosis of endometrial cancer is coming with a hefty dose of frustration: her health insurance company is overriding her doctor's recommendation for treatment.

And if she were to go ahead with the treatment without approval from her insurance company, it could mean a bill of $150,000.

Nilsson is an Ada County Highway District commissioner and former community member of the Idaho Statesman's editorial board. Before that, I knew her when she was the planning director in Canyon County.

She reached out to me last week to see if I thought her story might be newsworthy.

I think it is. It's yet another illustration of our broken health care system.

It all started in January, when Nilsson went to her doctor concerned about some unusual bleeding. A biopsy the next day revealed endometrial cancer, a malignancy in the lining of the uterus.

She was referred to Dr. Jerry Perez, a highly regarded gynecologic oncologist at St. Luke's who specializes in endometrial and cervical cancer. She saw him on Feb. 3, and because of a cancellation, she had a total hysterectomy the very next day.

Testing offered a host of good news: no cancer in five lymph nodes and no cancer in the fluid from a pelvic wash.

But in the uterus, they did find malignant cells in a lymph duct.

And molecular testing showed the cancer was what's known as mismatch repair, or MMR, deficient, a condition in which cells cannot fix errors that occur when DNA replicates, leading to a high rate of mutation. And it was histologically aggressive, meaning a tumor is likely to grow, invade or spread rapidly.

Her cancer hadn't spread enough to be classified as Stage 3, but it was the highest grade of Stage 2 cancer, Stage 2C.

Based on this, Perez recommended six rounds of chemotherapy plus the drug Keytruda, citing strong recent evidence that adding Keytruda dramatically reduces recurrence risk in MMR-deficient endometrial cancer.

A 2024 study of the use of Keytruda with chemotherapy showed a reduction in recurrence from 42% without Keytruda to 31% with Keytruda.

And when you have cancer, you're going to do whatever it takes to shave off every percentage point you can from the likelihood of recurrence. Shaving off 11 percentage points is a big deal.

Nilsson said she's always been happy with her insurance company, but she was disappointed when she received a "partial denial" from the company, which said Keytruda was "not medically necessary" because her cancer was not "advanced" enough (not stage 3-4). Would the company prefer that her cancer advances to the next stage before trying the treatment?

"The nub of the argument is, you can't have Keytruda because it's not medically necessary, because I'm not advanced, ignoring the research that's specific to my type of cancer and the molecular analysis of the cancer," Nilsson said.

Her chemo has been delayed while her appeal plays out, but the clock is ticking because chemo must begin within a post-surgery window.

That window closes on Friday, and Nilsson is scheduled to start her chemo then.

The question is whether she'll be doing the chemo with or without Keytruda.

"To me, from a business decision, it seems like it'd be cheaper to deal with me now than to have this likely get a reoccurrence," she said.

She could pay out of pocket, but the cost to her would be $150,000.

"I don't know how I'm going to pay for it without a long payment plan," she said. "Yeah, I'm happy to pay for it, but I don't have $150,000."

So now on top of the stress of facing six rounds of chemotherapy, she's also facing a fight with her insurance company.

"So it's like, regardless of good insurance, you have all this technology, you have these amazing drugs," Nilsson said. "Now, the person making the call is somebody somewhere who works for (the insurance company). It's not my physician, who's an expert."

Scott McIntosh is the opinion editor of the Idaho Statesman. You can email him at [email protected] or call him at 208-377-6202. Sign up for the free weekly email newsletter The Idaho Way.

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