005 - Game On
They Have Thirty Days
I just wanted to send out two quick updates. First, I will be writing more here as my appeal has officially been submitted to Kaiser Permanente of Washington, as of 4pm PST today and I am starting to feel better. I have not felt great for the past six weeks or so (I'll go into much more detail in a subsequent post). One of the pieces of the appeal is a letter that I wrote asking Kaiser to cover the treatment. See below for a somewhat redacted copy of the letter I wrote to Kaiser.
Second, I have included a link to a podcast that I recorded a couple of weeks ago about me, my disease, and Kaiser's decision to not cover this treatment. You can find that here:
Aaron M. Monheim
XXXXX X. XXX XXX
Spokane Valley, WA 99016
Member ID#: XXXXXXXX
May 15, 2021
Kaiser Foundation Health Plan of Washington
P.O. Box 34593
Seattle, WA 98124
To Whom it May Concern:
I am writing this letter to formally appeal Kaiser’s decision, stated in the February 18, 2021 denial letter. My name is Aaron Monheim, Iam a thirty-four-year-old husband to Whitney and father to Sloan. Like every parent, the experience of becoming a father completely changed me for the better. Immediately after her birth, we went to the NICU due to delivery complications. During that time in the NICU, I promised Sloan that I would do everything in my power to make sure that I walk her down the aisle. This changed my complete outlook on life. I became far more conscious about what I was eating and how I was treating my body. I became more driven and was on a fantastic career path.
In October of 2019, as a family, we were given the life-altering news that I had Relapsing Remitting Multiple Sclerosis. This began to take away my promise, my ability to walk. I went through different stages; at first I was terrified, but after the first appointment with my first Kaiser neurologist, Dr. Wurst, I was convinced that I was going to beat this disease into submission. Dr. Wurst and Kaiser gave me the option of either glatiramer acetate or interferon beta 1-b for my first treatment; I chose glatiramer acetate with Dr. Wurst’s advice of less side effects. I started utilizing this DMT within two weeks of diagnosis.
I unfortunately had two more relapses before the end of 2019,including one where I fell at the grocery store and was hospitalized. During my follow-up appointment with Dr. Wurst after the second relapse (Christmas 2019), he recommended that I transition DMT’s to Rituxan. My wife and I asked Dr. Wurst a few questions about Rituxan and he explained that he didn’t know the answers to our questions and that because I have highly-active RRMS, he believed that I would do better going to a specialist rather than a general neurologist. Kaiser does not have a Multiple Sclerosis specialist within 200 miles of Spokane, WA; Dr. Wurst recommended that he refer me outside of Kaiser to Dr. Craddock at the Providence MS Clinic in Spokane.
In the beginning of March and early May of 2020, I had my first infusions of Rituxan. I felt great for the first few months and then started to decline. By the end of July 2020, I was back in the ED with another relapse. Over the course of nine months, while on treatment for MS, I went from being able-bodied and living a normal life to a baseline EDSS of 4.5. During the follow-up for the relapse in August with Dr. Craddock, she ordered a blood test to see if my B-cells had repopulated early or if I had a relapse without the presence of B-cells. The test came back two weeks later, negative for any B-cells.
At this point, I was on highly effective treatment and still progressing in both disease and disability. After discussing aHSCT with Dr. Craddock, she agreed that I should be evaluated for transplant and referred me to Dr. Nash at the Colorado Blood Cancer Institute(CBCI). After Dr. Craddock faxed referral to CBCI, Kaiser Colorado advised they could not process until the patient (me) had obtained a visiting member number for Colorado. I spent hours on the phone, and eventually received a visiting member number (#XXXXXXXXX). CBCI then contacted Kaiser Colorado for a second time to process the referral, but now they were told that this referral would need to come from an in-state Kaiser provider to be processed. This required me to spend hours on the phone trying to explain to Kaiser Colorado why I needed to establish care with a PCP in Denver. In early December, I had a virtual appointment with Kaiser PCP Dr. Leslie Thompson of Skyline Primary Care in Colorado. After explaining the situation to her, she referred me to the Kaiser Neurologist, Dr. Samuel Cohn, who I was evaluated by on December 31, 2020.
In the appointment with Dr. Cohn, he thoroughly went through my medical history, records, and MRI imaging. At the end of the appointment, he agreed that it was perfectly reasonable for me to be evaluated for transplant due to my highly-active disease despite the use of effective disease modifying treatments. He agreed to refer me to Dr. Nash and CBCI for transplant evaluation. That referral was approved on January 14, 2021 by Kaiser for a total of fifteen (15) office visits for transplant evaluation. The next day, my wife and I met with Dr. Nash and his transplant team. It was determined that I was an excellent candidate for aHSCT and Dr. Nash sent in the authorization for transplantation, which was denied. This is the denial that this appeal is in reference to.
This process has taken me almost nine months and I have continued to decline while I have been fighting and begging for you to cover this treatment, which your own Neurologist (Dr. Cohn) stated “is a potentially curative treatment.” If this is an experimental treatment, why would I have been referred by a Kaiser physician to be evaluated for transplant and that referral was approved? This is a potentially quality-of-life saving treatment which Kaiser Permanente has covered for MS patients in the past. Dr. Nash and the transplant team at CBCI have transplanted a Kaiser MS patient in Colorado. How can it be justified to deny me treatment simply because I live in the state of Washington rather than Colorado?
Autologous Hematopoietic Stem Cell Transplantation for MS is the only treatment for Multiple Sclerosis that has been clinically proven to stop all MS disease activity and disability progression. Every pharmaceutical disease modifying treatment has only been clinically proven to reduce the occurrence of relapses. The clinical data is clear: aHSCT is a potentially curative treatment for 85% of patients according trial data versus pharmaceutical interventions that onlyslow disease progression. There is not a drug on the market that limits relapses by more than 77% (Lemtrada), which is far more expensive and less effective than aHSCT.
Please understand that I have jumped through every single hoop that Kaiser Permanente has asked me to. I have taken the medications which you have requested, I obtained a visiting member number, a PCP and Neurologist in Colorado; just to get the referral processed, which was subsequently approved. This is the only shot that my family and I have to live a somewhat normal life. Please approve me, Aaron Monheim, to undergo aHSCT to beat my MS.
Thank you for being on this journey with me, friends. I love you all dearly and thank you for the thoughts, prayers, and support as this journey has continued down this long, meandering path.