When Insurance Denies Cancer Treatment: Finding Strength and Resilience After an Appeal Is Rejected

Living with cancer is already a full-time job. It shouldn't require becoming an expert in insurance policies and appeals, yet for many of us, that has become part of the disease.

Recently, I wrote a piece titled When Insurance Delays Cancer Care: Why Patients Must Become Their Own Advocates. I'm sorry to report that, this time, despite the hours I spent trying to resolve the issue, I was not successful. Every appeal was denied, and I have had to find another way forward.

Resilience is one of the most important qualities a cancer patient can possess. It keeps me grounded and reminds me to focus on what truly matters, even when circumstances are beyond my control.

When Insurance Changes Course

For the past four years, I have received a subcutaneous infusion called HyQvia. It has been wonderful for me—no side effects, no reactions, and the treatment takes half the time as the IV treatment in the clinic. I still cannot understand why, after approving it for four years, my insurance company now says my diagnosis no longer qualifies because it is not FDA-approved for my condition. No further explanation was given.

Fighting the Appeals Process

I appealed every way I knew how, but eventually my doctor decided not to pursue the final level of appeal. It would have required writing a detailed medical justification explaining why this treatment was medically necessary for me and appearing on a Zoom call with a third party who would make the final decision. He originally recommended home infusions because I had experienced significant reactions to IVIG at the infusion center. HyQvia, delivered slowly through a small pump into the tissue of my abdomen instead of directly into my veins, solved those problems.

We then tried to get a different recommended medication, Gamunex-C, hoping it would be approved instead. Unfortunately, that request was denied for the same reason: it is not FDA-approved for my specific diagnosis of small lymphocytic lymphoma, the disease that has left me so immunocompromised.

When There Are No More Doors to Knock On

I can't help but wonder whether cost played a role in this decision. Regardless of the reason, the result was the same: I lost access to a treatment that had worked well for me. Since my doctor ultimately decided not to pursue the final level of appeal, I reached the end of the road.

Am I disappointed? Of course. But as I have learned through every cancer-related challenge, I have to reframe my thinking and accept returning to the infusion center for treatments that take twice as long, bring more side effects, and often leave me with a purple arm as a souvenir.

I guess that many of you have faced similar frustrations—spending countless hours on the phone, filling out forms, waiting for answers, and hoping someone on the other end understands that these are not just insurance claims. They are our lives.

We can spend our energy wishing things were different, or we can accept the reality in front of us and decide how we will respond.

Advocacy Doesn't Always Mean Winning

Will I stop advocating? Absolutely not. That's simply not who I am. I may lose a battle, but I refuse to let it define my outlook. Cancer has taught me that resilience isn't about always getting the outcome you hope for. It's about getting up the next day, adjusting your expectations, and continuing to move forward with gratitude, determination, and hope.

Sometimes being your own advocate means fighting until there are no more doors to knock on. Other times, it means having the wisdom to accept what you cannot change while never losing the strength to face whatever comes next.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.