Coverage Denied

After He Said Cancer | A Memoir

Tucked deep in the trash, I could only see the top half of the paper. It looked official and like something you would save, not throw away. It had my husband’s name, address, his insurance ID number, and the name of our health insurance carrier.

I picked it out of the trash to take a closer look. Beneath his name and the blood test was the amount charged, $4,900. Then, in bold lettering, “Appeal results: Coverage has been denied.”

I stopped reading and threw it back into the trash, regretting having picked it up in the first place.

The bill was for a personalized blood test designed to detect tiny fragments of my husband’s cancer swimming around in his blood. It was sometimes called a “liquid biopsy” because its purpose was to check if the cancer was starting to grow back from somewhere in his body. Once the cancer started growing, it would send off cells and other tiny fragments of itself that could be detected using this test.

I hesitated for a moment and got the paper out of the trash for a second time. My overwhelming instinct was not read the letter and to walk away. Pretend I hadn’t seen it. Go on with my day.

But then I wouldn’t figure out the source of my irritation.

I took the letter to the dining room table and sat down to concentrate.

The letter continued, “After reviewing the information available, a Physician Reviewer specializing in General Surgery and General Vascular Surgery, determined that we cannot approve the above service because Regence considers the service investigational…There is insufficient research to show that testing for circulating tumor/cell-free DNA or circulating tumor cells for purposes other than targeted treatment selection can improve overall patient health outcomes.”

In other words, the letter said there was no data to support that my husband would live a longer and healthier life by taking this test. This was true, and a complete crock, all at the same time. My neck began getting hot and tension entered my chest.

Yes, there was insufficient research showing that lives were longer when doctors ordered this test, but common sense dictated that nipping something in the bud when it was a small wave was a superior approach to waiting until something became a tsunami.

Imagine a rich, green lawn that had been fertilized and mowed with loving care by a Master Gardener. Every spring, the lawn was aerated, seeded, and watered. The lawn’s texture had become so soft that one felt compelled to walk on it barefoot.

Suddenly, a weed comes into view at the edge of the lawn. It’s just one small weed. Of course, we could ignore it and say that there was no scientific evidence that finding it early and removing its entire root system would prevent the weeds from multiplying. But it made sense to me that the earlier the weed was detected, the sooner it could be killed. Once the weed had multiplied into hundreds of weeds, getting control of it would be a different story entirely.

The new breast cancer doctor told us the story of how she used this test in one of her patients, a young woman with breast cancer in remission. She had the woman take the test several times over the course of a year. The first few tests were negative, and then she had a slight, borderline positive. So slight, that it was unclear if the test was truly positive.

The physician went ahead and ordered scans to check for return of the cancer, and a new, small ‘hot spot’ of likely cancer was found the bone of her arm. She underwent radiation, and the blood test for cancer turned negative.

Developing a personalized cancer test that could be performed on a blood sample was a tremendous success story for how science could benefit human health.

I read a little further. “In their appeal letter, your provider requested that this appeal be reviewed by an MD, specializing in Medical Oncology. When provided, the specialty-matched doctor will be in the same or similar specialty as the doctor who ordered the treatment, but we are not able to guarantee that the doctor will have the same sub-specialty or additional areas of expertise as the ordering doctor. Your appeal was reviewed by a physician qualified to review your appeal request.”

What a crock.

I looked up the “Physician Reviewer” and found where he practiced and his age. He wasn’t a cancer specialist. He was a vascular surgeon. The last time he had any involvement with breast cancer was on a surgical rotation during residency, about three decades in the rearview mirror.

In all my years as a practicing physician, not once had a Physician Reviewer – employed by the insurance company – overruled the insurance company’s initial or second denial of payment. It was such a conflict of interest; I was surprised that it was allowed to continue.

Once in my career, I was successful in getting a patient’s testing paid after a third appeal to the insurance company. In this case, the insurance company was required to pay for an external physician to review the case, who was not paid by the insurance company.

So, this appeal’s denial letter was the end result of a long chain of events that was fated to end in one specific way. The doctor submitted the bill. The insurance company would reject payment. The doctor would appeal, and the insurance company would ask their employed “Physician Reviewer” to deny the appeal. A second appeal would be issued, which would be summarily denied.

It was an elaborate dog-and-pony show between the insurance company and the doctor. In the end, the cancer test manufacturer would write off the bill. Our new breast cancer doctor had cut a deal for us with the manufacturer. She enrolled many patients in their clinical trial of the blood cancer test, so they ‘owed’ her to cover the cost of his testing outside the clinical trial.

Essentially, the test was free for us. The bill collectors would never come to our house. We didn’t have to worry about these letters with “Appeal Denied” as the subject line.

I should have been happy, but I wasn’t. There was a piece that was gnawing at me, and making it hard for me to look at the letter, but also hard to leave it in trash.

Not everyone had access to the test. The test represented my husband’s privilege within the healthcare system and a reminder of the thousands who couldn’t access or pay out-of-pocket for the test. The U.S. healthcare system has several tiers of care, depending on whether you are insured and the type of insurance you have. There was a privilege to being seen by this physician and having this kind of care.

He had access to this test for several reasons, mostly as a result of some sort of privilege. His physician-scientist wife pushed for better care, because she had the education and experience to know what exceptional health care looks like. He had excellent health insurance, a perk through his wife’s job at the University. There was also a little luck in happening upon the right breast cancer doctor, who rendered a third opinion on his care. All of this landed him in the right place at the right time for an exceptional breast cancer doctor to provide cutting-edge care.

Not everyone has access to this level of breast cancer care. This made me feel ashamed and disgusted by the system that kept patients within separate hierarchies of medical care.

I got up from the table. I felt disgusted by the system that kept patients within separate hierarchies of medical care.

I wanted everyone with breast cancer to have access to this test, if it could benefit their care. It was just a matter of time before it would become the standard of care. This was already the case for patients with colon cancer.

I thought about the Physician Reviewer once more. He played his part in this elaborate play. The test did meet the insurance company’s criteria as “investigational”. He clicked a button, denied the payment, and went on to the next item in his inbox.

Did he have a spouse with cancer, about whom he prayed that they would live until their daughters could graduate high school? Doubtful, I thought with sarcasm. Then, just as quickly, I hoped he didn’t. No one deserved to be in this position.

I crumpled the paper up and threw it back into the trash. This time, it was definitive. The paper would stay in the trash. I was done with it and done thinking about this.

And the bill would disappear into the ether, where it belonged.

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If you would like to read other posts, here are a few:

1. How It Began. This story is the origins of my Substack and tells of the first moment when we learned of my husband’s breast cancer diagnosis. https://www.afterhesaidcancer.com/p/how-it-began

2. Canary in a Coalmine. The cluster of cancer cases — including male breast cancer — at Camp Lejeune in North Carolina and the link to contaminated water. https://www.afterhesaidcancer.com/p/canary-in-a-coalmine

3. That Ribbon. The gendered stereotype of breast cancer and my emotional response as a wife of a man with male breast cancer. https://www.afterhesaidcancer.com/p/that-ribbon

4. The Day He Nearly Died. The story of my husband’s near death in the middle of chemotherapy from a blood clot. https://www.afterhesaidcancer.com/p/the-day-he-nearly-died

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