000 - Intro & Intentions

Everyone has intentions. If someone says they don't; you're being lied to.

Welcome to Referred and Denied. I’m Aaron, a 34 year old husband and father who was diagnosed with an aggressive course of Relapsing Remitting Multiple Sclerosis in October of 2019. For those who don’t know, Multiple Sclerosis is an incurable autoimmune disorder where the body’s immune system attacks the insulation or protective sheath, called myelin, of the nerves located within the brain, optic nerves and spinal cord. As the disease progresses, it becomes increasingly difficult for the brain to communicate with the rest of the body which manifests in the form of disability. For a more in-depth look into who I am and what MS is, click here, or just subscribe and keep reading.

“What?! Why would you go to Russia? Who are you, the Jordan Peterson of MS?!”

After receiving the diagnosis, starting a DMT and then having two relapses in three months; I began researching more aggressive treatments for MS. I originally heard about HSCT through my wife’s best friend, who coincidentally also has RRMS. I learned about Clínica Ruiz, run by Mayo Clinic Alum Doctor Ruiz, and the more than 3,000 autoimmune patients that had successfully been transplanted. I read multiple papers and watched webinars by Dr. Denis Fedorenko, Doctor and Professor of the Department of Hematology and Cellular Therapy at the A.A. Maximov Hospital in Moscow, Russia. I found a clinical trial that was actually done in the US and had been published the same year that I was diagnosed. Dr. Burt’s randomized clinical trial put the best available pharmaceuticals against autologous hematopoietic stem cell transplantation (aHSCT or HSCT), the results were breathtaking. The trial started in 2005, and more than 80% of the patients that were transplanted, still had no disease activity, no relapses, no new lesions and actually became less disabled than they were prior to the transplant! While previous neurological damage cannot be repaired, this treatment stops further neurological decline rather than slowing it down. Call me skeptical, but I trust a randomized clinical trial showing long term safety and efficacy more than the marketing material from Clínica Ruiz or Dr. Fedorenko’s clinic in Moscow. Unfortunately, I quickly learned that after actress Selma Blair's transplant, Dr. Burt went on sabbatical and was no longer accepting patients. The realistic options, outside of a trial, were out of country. I weighed my options and applied to be transplanted by Dr. Fedorenko in Russia. After being accepted, I was scheduled to undergo HSCT starting on October 6th, 2020. To stop further damage before transplant I started a DMT called Rituxan, which is one of the most aggressive treatments for MS. I felt so much better, albeit mentally. I had a plan of attack and I was ready to fight.

And then…

That dumb b*tch, SARS-CoV-2, ruined everything. The same week that I received the first infusion of Rituxan, which destroys B-Cells leaving me immunocompromised, we were told to Stay Home and Stay Healthy. Within a week, the United States, European Union and Russian Federation all shut their borders. The following week,I received an email from Dr. Fedorenko’s clinic letting me know my treatment was cancelled.

For the second time in a six month period, my entire plan had to change. To say that I was devastated would have been an understatement. Still one thing I have learned since my diagnosis is perspective; my treatment was cancelled before I got there. A fellow MS-er, Melissa, got admitted to the hospital in early March. She had her stem cells collected, shaved her head, and then was forced to leave the country before international borders closed. This forced her to wait until September to finish her transplant.

msmelissagoestorussia

A post shared by Melissa Workman-Egnor (@msmelissagoestorussia)

If you can’t find a way, make one.

One thing that my Dad always reminds me is to keep my options open. All of my options had just closed. I no longer felt comfortable getting on a plane and traveling, particularly on the way home with a brand new immune system. It was the end of June and I was beginning to think I would never get a transplant. After previously reading about the newly announced BEAT-MS trial, it was time to revisit domestic options. I reviewed the trial information and started reaching out to the different locations that were participating in the trial. I knew all of the facilities participating in the trial were capable of performing HSCT. Were any of these research centers doing transplants outside of the trial?

One of the first responses was from Dr. Richard Nash, who is the hematologist at the Colorado Blood Cancer Institute in Denver. Within a week, my Neurologist in Spokane referred me and I had released all of my medical records to CBCI. Dr. Nash reviewed them with his transplant team where they determined I was a potential candidate for transplant and scheduled me for my initial consultation.

Referred and Denied

Yep, that is right. The initial denial made me think that it was a mistake because they wanted me to be treated in Spokane by an Oncologist, who cannot treat MS patients. After calling the insurance company and understanding my options, I decided to appeal. Dr. Nash wrote a letter about why it is critical that I have this transplant and that I am a good candidate. Also, the medical director of the Oncology clinic in Spokane wrote a letter saying they weren’t capable of treating me. Those letters were sent with the letter I wrote into my insurance company. Three days later the appeal was denied.

Spoiler Alert: My insurance company has approved 15 office visits at CBCI. I have since had my first consultation with Dr. Nash and his team. The transplant has been ordered and I am tentatively scheduled to start treatment the first or second week of March 2021.

Housekeeping

I was supposed to talk about intentions or goals with this Substack. First, I want to tell my story with the hope that someone will learn how to be an advocate for themselves in their own medical journey. I originally wasn’t and that, in my opinion, is why I was not diagnosed earlier and had such a high lesion load upon diagnosis. You. Know. Your. Body. Become an expert in your body. Know what feels normal and what doesn’t. Don’t learn the hard way (like I did) that if you don’t advocate for yourself; no one else will. Get your physicals. Have a primary care provider. Please take care of yourself.

Next, you should expect weekly posts before I enter treatment. The early posts will go into how I was diagnosed, my experiences with MS since diagnosis, why I chose to pursue HSCT, and the battle/process to get approval for my first office visit. Once in treatment, I will probably post more and it will transition to the experience of getting a stem cell transplant. Some posts will be longer like this, some may be pretty short.

One more thing: I will usually add things that I am currently “consuming,” which is a bit stolen from a favorite podcasts of mine, The Reason Roundtable. This could be everything from books, articles, podcasts, tv shows, films, music, etc. Speaking of which, I am currently listening to Matt Welch's April 1989 Playlist, which includes arguably the best (my favorite) Pixies song, Debaser. Here, I’ll make you a deal. The more people subscribe, the more I will try to be entertaining.

Best,

Aaron

What Am I Consuming:

:: PODCASTS ::

The Fifth Column - Episode 219 with Anna Khachiyan of The Red Scare podcast.

Blocked and Reported - Andy Ngo Way Should Ben Shapiro Be Deplatformed

:: MUSIC ::

:: BOOKS & WRITTEN CONTENT ::

The Coddling of the American Mind by Greg Lukianoff and Jonathan Haidt