Hi everyone, my name is Serenity, I’m 26, and last year I was diagnosed with Multiple Sclerosis (MS). This diagnosis turned my life upside down.

MS is an autoimmune disorder and a Demyelinating disease where my immune system attacks the coating on my nerves (myelin) in my central nervous system (CNS). This creates immense inflammation, along with lesions on my spine and brain made up of scar tissue. This causes me to struggle with life long cognitive and mobility issues. Luckily, after a lengthy hospitalization last year, it was discovered I currently only have 2 lesions, a large one on the right side of my spine, and a smaller one on the left side of my brain. After I suffered from a flare up consisting of optic neuritis (inflammation in the eye nerves) which caused color desaturation in my right eye and some mobility issues (such as loss of sensation on the right side of my torso and delayed reaction movement in my right arm and leg), I was given a lot of steroidal medication to assist with comfort and recovery. With help from Cleveland Metro hospital and my beyond amazing neurology team, I recovered the best I could and was approved to return to daily activity/work contingent on making major lifestyle adjustments.

My medication, Ocrevus, is a bi-annual 8 hour infusion that I have administered at the hospital’s infusion center. I’ve had my first 2 infusions and saw great improvement and management in my status/condition.

However, after changing jobs, I lost my insurance coverage. My insurance status will be active again in 90 days, but my next infusion date is way before then. In 2 weeks to be exact. Postponing my medication puts me at risk of a relapse where I can suffer exasperated or new symptoms, along with the risk of creating new lesions on my spine and brain. I’m stuck because my medication itself is $50,000<. Combined with the infusion administration and annual MRI and neurologist appointments, I’m looking at no less than $125,000 a year. I simply cannot afford this, no matter how much and how hard I work.

I have been in contact with government agencies and grant organizations, but with me working rather than claiming disability, I face being denied government assistance and I cannot apply for org aid without active insurance coverage. Even if I’m miraculously accepted for aid, it will not be active in time for my upcoming appointments. I have reached out to the Ocrevus manufacturer (Genentech) and applied for assistance on their end as well, which would cover the drug, but not the hospital costs (around $3’000-$5,000 a visit minimum, upfront- no payment plan or co pay options available). This puts me in a tough spot because I don’t want to delay my treatment and risk worsening my condition, however it would be impossible for me to pay for this alone.

(TLDR; my medication for MS will cost me about the price of a small house A YEAR, just to continue living without fear of losing my mobility and thinking capacity)

Any help would be greatly appreciated. I know the economy isn’t great, so I don’t expect everyone to contribute, but even sharing my story would be amazing. I just don’t know what else to do.

Thank you. God Bless.