IVIG treatment for Myasthenia Gravis

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Everyone deserves access to a treatment that is successful for them, especially when they are told it will be covered by insurance. 

I have a disease called Myasthenia Gravis. Myasthenia Gravis is an autoimmune disease that attacks all of your voluntary muscles. These muscles are used for breathing, smiling, speaking, swallowing, eating, walking, etc. 

A few months ago I lost the ability to speak, I could not swallow or eat, I lived off of Ensure. I had a nystagmus in both eyes and when I used my hands they would ball up and become temporarily paralyzed. Some days I couldn’t even do a thumbs up. 

I am a 22-year-old stay-at-home mother, full-time in school working towards becoming a therapist/clinical psychologist and being able to speak to my future patients and my child is pretty important. The hardest part besides not being able to speak was not being able to smile. My three year old couldn’t understand me and all I could do was cry. 

I was in need of IVIG infusions. Only two. I am allergic to prednisone because it gave me what is called prednisone psychosis and put me into a Myasthenic Crisis that I was able to come out of thanks to IVIG. After being told that BCBS would cover it at no cost and to go ahead and schedule my infusions, I received a letter today saying that coverage was completely denied. 

This disease has been so terrifying and hard on me and my family. I can’t afford these treatments, and currently they are my only option as far as keeping me out of the hospital. 

My neurologist wanted me to have just two double doses rounds of IVIG to get me through my flare up, I just had my transsternal thymectomy 8 weeks ago. The IVIG was to get me along until me Cellcept starts working. 

After my surgery I went into a flare up and struggled to smile and speak again if I ate throughout the day. If I have somewhere to be or I know I will be interacting with people I will go without food so that I will be able to communicate and not be heavily embarrassed by my lack of facial expressions. I am down to 105 pounds and when I got sick in May I was 119.

I called the insurance company and made SURE it would be covered. I had met my out of pocket max due to the two week hospitalization and surgery. All I needed was two doses so that I could speak, see, hold my head up without extreme pain and weakness and smile to my little girl. They assured me it would be covered at no cost to me, and I asked them about twenty times if they were absolutely positive. 

Please sign this petition to help me gain access to the healthcare I need in order to function. 

We pay our premiums and just finished paying off all of the medical bills. We took a sigh of relief and then became crushed to find out our insurance company had lied to us. We now have an almost $16,000 bill that is due by the 28th of October.  My neurologist had a peer to peer that was deemed successful yet the bill still has NOT been covered. 

Apparently for people with Myasthenia Gravis, IVIG is mainly covered when you are in a crisis. So many of us are fighting to have this covered. A crisis can be VERY deadly and it is where basically your diaphragm stops breathing for you because it becomes too weak. Things that can cause a crisis are menstrual periods, stress, the heat, catching a cold, and more. A “crisis” could mean death.

Why do they wait until we are in a potentially deadly Myasthenic crisis when these treatments help so many to prevent us from being hospitalized which then affects our job, our school work and our family. My three year old daughter didn’t understand why her mommy was suddenly gone for two weeks and came home with a huge “booboo” down her chest. I just had my chest sawed and cracked open to remove my thymus so that I could have a fair chance at remission. 

Nobody deserves to go through this. I would have never placed this burden on my family and I would have sacrificed my health if I had known that I indeed would not be served the treatment I needed at no cost to me after paying my out of pocket max and having no other option. I don’t want to wait until I could potentially collapse and stop breathing in front of my child before I am allowed the aid that I need. My husband is a paramedic and works nights, lord forbid he isn’t home if it happens. Please help me to reverse this and have access to IVIG and get BCBS to cover this bill. I just wanted to be able to have the basic functions of life and avoid being hospitalized which was the next step for my neurologist if they denied me.