A Northwest Lens On Myeloma: An Unexpected Foe
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 was not easy 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.
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Mark's Photo For The Month
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.
Photo copyright © 2014 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Mark,
I'm so sorry that you had to go through the stress of two appeals. I'm just glad the process had a good outcome, and I'm so glad your doctor went to bat for you.
Stunning picture of the tulips, too.
Congratulations on your success, and thank you for your frank and beautiful columns.
As if there isn’t enough stress in living with multiple myeloma and the treatments! Happy that your second appeal worked. Thank you for sharing your story and the beautiful photo.
I am glad you were ultimately successful in your appeal. What a nightmare. Stay strong.
It’s good that both you and your doctor worked together on the appeal and succeeded in a positive result. Often insurance companies will deny things after the first appeal, but then approve with a second appeal. Whatever the reason in your case, I’m glad that you can get back on track.
The lighting on the tulips from the rising sun is stunning.
Nancy in Phila
Nice column, Mark. Glad it was resolved, even though it took so much effort and cooperation with your doctor. Good luck!
Dear Mark,
Thank you for sharing your experience in successfully appealing the insurance decision. What a relief for you and your family! And thank you, too, for the beautiful and uplifting photo of the tulips.
Mark,
Very informative column! You and your doctor's tenacity paid off.
Mark,
I can only imagine. I hope this article is as close that I, and the rest of us, ever get to experiencing this problem.
Craig
How stressful this must have been for you and your family. So glad you and your physician were able to finally get it resolved.
I am also post-transplant, awaiting return to Pomalyst for maintenance (only). Love your photo!
Outstanding article! I am so sorry that you had to endure such stress. It is a lesson we all should take heed of. Like you, we need to be our own advocate. We need to know and understand the various treatment regimens, and we need to understand why one is better for us than another. I praise you and your doctor for putting time and effort into the appeal process. All of us should realize that we cannot take ‘no’ for an answer when our very lives depend on the drugs used to treat myeloma.
Back in 2015, my husband's doctors recommended proton beam therapy for two plasmacytomas that were resistant to my husband’s induction therapy. Our insurance company denied the request because of cost. We appealed, but they still denied the request. Our wonderful radiation oncologist said that they could still irradiate the plasmacytomas using intensity-modulated radiotherapy (IMRT). The insurance company did approve the IMRT, and the IMRT did eliminate the two plasmacytomas without damaging the surrounding tissue.
Like you we were devastated upon hearing of the initial denial of service, but through this experience we learned a lot about radiation therapy, including the various types. Like your own doctor, we also appreciated the concern and care that my husband's doctors exhibited on our behalf.
Way to go for your persistence Mark! I hope your appeal success is "lifetime", otherwise they will make you go through the same process every year like I did. Eventually after COBRA expired I switched to a marketplace plan and, so far, I've not had to go through prior authorization, step plans and appeal processes. I will keep my fingers crossed.
That is such great news, Mark. Your doctor and your persistence paid off. Your photography is beautiful. You are so lucky to have tulips growing where you live. All the best with your treatments and I am very happy for you.
Diana
Congrats on winning your appeal.
My main reason for commenting, however, is that in your photograph, you look exactly like my brother Gary. I only wish I had a photo of him to show you.
Just so you know: You've got an unrelated, identical twin brother, who lives in Seville, Spain.
Regards,
Taff
Wow, Mark! I can imagine how stressful that must have been for you and your family. I'm so glad that your medication was ultimately approved! Way to hang in there!
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