The Process

February 5, 2024

Every so often the answer is just a loud “No!” The specialty pharmacy email was short: “Your insurance has denied the authorization on your medication and cannot be filled at this time. We have notified your physician, please contact your physician to review options.”

The drug is erdafitinib, trade name Balversa.

The nurse at the Cancer Institution said the financial office was going over the authorization request to ensure it was submitted properly. So the financial people have it under control. Don’t they?

The insurance company also sent an email. “Your prior authorization request has been denied. Visit your ‘Secured Authorizations’ to review details.” The details are, contact your prescriber to discuss alternative treatment options. If you think the insurance company is wrong you can appeal.

You sometimes see this played out on the evening news, when a crusading reporter tells a story of a cancer patient sliding into the health-care/insurance swamp: an insurance company refusing to cover a prescribed drug. The patient, and sometimes the doctor, dials 800 numbers, talks to computers, sits on hold, argues with clerks and bureaucrats who have no answers.

It’s not that simple. I called insurance. A pleasant young woman answered. She didn’t treat me like a deranged cowboy or cite a barrage of opaque regulations and procedures. She didn’t place me on hold while she searched the company database, or maybe an old steel filing cabinet, for my profile (I could hear papers shuffling, drawers opening and closing). In the end, she did pitch me back to the doctor’s office. They need to provide more information.

The people at the Institution are pros, they work the health insurance system like a symphony virtuoso with a finely tuned violin. For three years all the doc’s orders—tests, scans, procedures—have sailed over the insurance blockade. A letter shows up, usually just before I have the doc’s requested procedure or therapy, but sometimes after, always marked “Approved.”

Then everything changed. The doc looked at my December PET scan and gave up on immunotherapy.

The theory behind immunotherapy is that it gives the patient’s immune system an extra push to kill cancer. It’s an alternative to bombing the bad cells with chemotherapy and radiation, which also destroy healthy cells. For many, chemo causes the worst side effects, the hair loss, nausea, bleeding, skin problems, blurred vision, others. Radiation is no fun, either.

The immunotherapy drug, pembrolizumab, better known as Keytruda and manufactured by the monster drug company Merck, let me off easy. I showed up for treatment, took the infusion, drove home, ate dinner, slept soundly. But the quality of life/drug effectiveness balance was one-sided.  Three CT scans and the PET over the past nine months showed the drug was not working. The problem on my liver and pleura (lining of the lung), identified as a thymic carcinoma, kept growing. So no drug-induced side effects, but no slowing the disease.

We need a win against the cancer, the doc said, meaning changing the tradeoff: progress against the cancer at the cost of likely negative side effects. His solution: erdafitinib.

The quality-of-life standard is simple: being OK, how I felt when I saw the doc. The standard at the Institution is not OK. Cancer patients don’t look well. For many, perhaps most patients, the treatments, chemotherapy, radiation, and immunotherapy have noticeable outward costs: weight loss, halting gait, caps to hide hair loss, wheelchairs and walkers, leaning on others for support.

The doc said, “You’ve done great, you should tolerate any side effects well. We’ll order erdafitinib from a specialty pharmacy. They’ll coordinate with insurance, including doing an appeal, if necessary.” 

The denial email showed up. The scenario of the insurance company as bad guy kicked in. The patient’s first reflex is frustration. But what does he really know? He knows what the doctor tells him. The amateur internet searches are pointless and dangerous.

So why, after a three-year winning streak of approvals, does insurance say “No—denied?” Is it, as the Cancer Institution people guess, a paperwork problem? Or something else? Sure enough, a couple of days later the doc’s office called to say they filed an appeal and “letter of medical necessity” with the insurance.

Three years ago, in January 2021, Foundation One, a Boston-based medical laboratory, analyzed my cancer tissue samples down to the cellular level. The doctor gave me eight pages of the 20-page report, mostly incomprehensible medical hieroglyphics. Buried in the fine print is the sentence: “Clinical data on the efficacy of erdafitinib for the treatment of thymic carcinoma are limited (PubMed May 2020). Erdafitinib has been primarily studied for the treatment of FGFR-altered urothelial [bladder and other urinary tract] carcinomas.”

Context: this was three years ago. Maybe some breakthrough was achieved. Maybe I’m an experiment, a clinical trial of one.

Patients and doctors both know one thing: cancer is a mystery, in its causes, its treatments, its consequences. Cancer is not one disease, or a dozen, it’s thousands of diseases that evolve and mutate constantly, even as those smart physicians and researchers discover new therapies.

We’re engaged in this mystery—to exist, to persevere, to seek joy alongside it. Twelve months of Keytruda didn’t stabilize this cancer. Erdafitinib probably won’t either. The process, really, is Point A to Point B. But then, what’s Point B? We all know. The doctor and the insurance company have a tough call. So does the patient: find the goodness in life, say your prayers, take your medicine, move forward.