An Unexpected Foe

I’m lucky that when I was diagnosed with multiple myeloma, my employer provided exceptional health insurance coverage. I’ve had only small out-of-pocket costs associated with very expensive life-saving treatments. Unfortunately, in recent days coverage for continued treatments was threatened and that has caused new stress and worries.


Recently I spent a lot of time fighting a new enemy in my myeloma battle: a treatment denial by my insurance company. 

This hasn’t been an issue for me up to this point. The treatments I had received were obviously very expensive, but they were all covered and, thanks to my employer’s generosity, I have very low premiums and a very low out-of-pocket cap.  

I am very aware of the stress that my family and I could experience if I didn’t have such good insurance. Fortunately, we’ve been able to avoid any significant anxiety on that front, but that all changed recently.

Following my stem cell transplant, my doctor prescribed an aggressive three-drug maintenance regimen of Kyprolis (carfilzomib), Pomalyst (pomalidomide), and dexamethasone (KPD). We agreed that I would be on the regimen for up to three years. 

For the first three months of KPD, the treatment was approved by my insurance, and the claims were paid, but then my employer changed plan administrators.  For almost a year, the claims for my continued maintenance treatments remained pending. I was receiving treatment, but the claims were not being paid. Late in 2017, the treatments were deemed “not medically necessary,” and the claims were denied.

The denial was made by a reviewing agent relying on the National Comprehensive Cancer Network (NCCN) guidelines.  As I understood it, the decision was for two reasons. 

First, the NCCN guidelines do not support the use of combination therapy (two or more myeloma treatments) for maintenance. While combination therapy is widely accepted as initial treatment for multiple myeloma, it is not a conventional approach for maintenance therapy.  

Second, the NCCN guidelines do not list Kyprolis as an approved maintenance therapy.

This denial was shocking and frightening. The KPD regimen had pushed my myeloma disease markers to unmeasurable levels for many months. I was feeling great and looking forward to a bright future. I couldn’t understand how this decision was made after a year of treatment, and I couldn’t imagine what my future held.

The appeal process began immediately. My appeal included a letter from my doctor outlining my current treatment and the success I had achieved with it. I also wrote a letter outlining my confusion about the decision and my understanding of my treatment needs.

My doctor noted that I was a high-risk patient and that in his opinion conventional treatments are insufficient and aggressive maintenance gives me the greatest hope of survival. The letter went on to explain that my current treatment is based substantially on a study published several years ago that showed that Revlimid (lenalidomide), Velcade (bortezomib), and dexamethasone (RVD) maintenance therapy yielded impressive survival outcomes in high-risk myeloma patients. (For more information on the study, see this related Beacon news article). 

My appeal was denied.

It is a bit tougher to understand the basis of this denial, but there was a statement that there were no peer-reviewed articles supporting the use of Kyprolis in a combination regimen for maintenance therapy. My doctor hypothesized that the insurer’s reviewing doctor, while acknowledging studies supporting the use of RVD maintenance, did not consider the equivalency of maintenance with KPD.

I requested a second appeal.

My doctor revised his letter, this time emphasizing the need for combination maintenance, the fact that I didn’t respond to initial treatment with RVD, and the equivalency, or even superiority, of KPD over RVD.  We also included graphs showing the history of my treatment and my significant response to the KPD regimen.

By this point, I had missed a full cycle of treatment, and some of my lab results hinted that the disease was taking advantage of this open door. I wrote another letter, pointing out my new lab results, and citing a review article in which several myeloma specialists describe how they treat high-risk multiple myeloma patient. In that article, the authors share their opinion that “in no other patient population in myeloma is the achievement and then maintenance of CR [complete response] more important.”  

  Perhaps it was my doctor’s revised explanation of my treatment, or concern that denial of treatment might trigger a relapse, but the second appeal was granted and the claims for KPD were approved.

When I first learned my maintenance treatments were suspended, I was overwhelmed. I was getting better. I felt healthy. I was beating the statistics. My doctor had given me the bad news about my high-risk cytogenetics, but then gave me hope by prescribing a treatment regimen that seemed to have a good chance of overcoming the risk. Having that treatment denied felt like my hope of survival had been stolen. I didn’t realize how much stress I felt while the appeals were pending until I was told the treatments would resume. A giant weight was lifted from my shoulders.  It almost seems funny that my wife and I celebrated the news that I could resume cancer treatment.

Persistence and a vigorous defense of my appeals by my doctors and myself returned my hope, at least for now.  Knowing about my disease and my treatment allowed me to take an active role in the appeal process. While it took two tries, my doctors and I were finally able to present the information in a manner that convinced the insurance administrator that my treatments were not only “medically necessary,” but may well be saving my life. With lessons learned that I hope never to use again, I’m moving forward, letting my doctors battle the disease, and focusing my attention on living.

────────────── ♦ ────────────────

 Photo Credit: (c) 2014 Mark Pouley

It is tulip time again in the Skagit Valley. I got up very early one year to arrive at the tulip fields before sunrise. I was rewarded with many great photos, but this is one of my all-time favorites. It is a great reminder of the beauty of the dawn of every day, whether we see it or not.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s