Dr. Stewart’s Journey with Multiple Sclerosis This Year
As I reflect on my MS journey this year, the saddest thing I will be sharing is not about my health, it’s about money, insurance, and the immense frustrations of our “healthcare” system, which I know many of you have experienced.
In November 2021, my MRI results were worse than expected, so my neurologist prescribed a new medication that was supposed to help. Unfortunately, my PPO insurance denied coverage, even after doing a peer-to-peer consult with her on its necessity. It was beyond frustrating when my insurance claimed to know better than my board-certified neurologist, physician-scientist, and professor emeritus in the Department of Neurosciences.
She was told I couldn’t get the new medication without failing two other, cheaper medications first, even though “I had already failed” on one medication after two years of painful injections 2-3 times per week. When you tell someone who has a diagnosis like MS that they have to "fail" more medications first, it is basically saying you have to prove that you are getting more brain lesions before insurance would accept another medication (not a very benign consequence).
I learned the other (cheaper) medication’s immune suppression would be a challenging choice during a pandemic and was going to cost a significant amount until I met my deductible. Despite the deep frustration with having to get a medication I didn’t even want, I paid for it anyway to move forward in my treatment.
This medication, of course, failed.
Once the medication failed, I was able to apply to a program from the manufacturer of the new drug and was given a year’s worth for free while we “sorted out” my insurance. Sorting it out included a letter from my neurologist and MANY hours on the phone to insurance and pharmacies (thanks, Hubby for the help). I applied to different programs along the way but ultimately made too much money to qualify for financial assistance. Eventually, after much persistence, the new medication was finally approved by my insurance!
Once approved, the manufacturer revoked the year’s worth of free medication because insurance was now covering it. However, despite being “covered”, it cost $7300 each month because of my high deductible. Beyond frustrated, we paid it so that I could again continue with treatment.
When I was finally able to start on the medication, I developed severe vertigo for the first time in my life. Needless to say, these were not the results I was hoping for after such a long journey to get to this point.
In March 2022, my follow-up MRI showed even worse results. Despite the incredible sadness and disappointment, I decided to stay on the medication and give it more time to help, especially considering there were months of insurance delays up to this point.
During this time (and the years prior), I did many treatments with lots of providers from all areas of medicine. I am incredibly grateful for all their support and for my loved ones for cheering me up on the days of intense fears and grief over my diagnosis. One day, I hope to share all the tools that have worked or not worked for me during my journey.
Fast forward about six months and the time came for my next MRI. I experienced a new round of frustrations with delays in getting the imaging order and delays at the imaging center to schedule the appointment. After all the anticipation and anxiety leading up to the appointment, I was told the day before the MRI that I would have to reschedule because the prior authorization hadn’t come through yet. (I would love to know why a prior authorization is even needed at this point because it’s not like my diagnosis nor neurologist changed during this time, only the fact that I had met my deductible). My team and I went into action and raised hell to ensure I received the prior authorization in time so that I didn’t have to wait any longer.
All the persistence paid off and my MRI results came in….
My latest results showed that not only was my MRI stable but several of my brain lesions have decreased in size for the first time! This was the boost I needed! As I go into the following year, it’s time to ramp up the Naturopathic brain enhancers and continue focusing on healing!
Despite this long and frustrating journey, I am still incredibly grateful for modern medicine, for all the donors, hardworking providers, researchers, and patients that came before me. I wouldn’t be where I am today without them. And, most of all, despite all the grief, anger, and frustrations, I am also grateful for my health insurance and care.
Now, I finally get the opportunity to spend more time on actual health, on the roots and core of my Naturopathic training, and on the wisdom of our bodies. And so it is!
Thank you for reading and for all the support. Thank you to my patients who ask how I’m doing, to my Nourish family, and to those I’ve never met but who support our small business at Nourish Medical Center. It means so much!