As I write this from my living room, all I can think is that I shouldn’t be here. I have to be in the hospital getting my weekly infusion. I would have to laugh along with the nurses, still amazed at how much easier it is since I had a port-a-cathec than when they had to try three, four, or even nine times to get access to a vein. I got to take selfies with the medical equipment for my weekly #InfusionDay social media posts.
But I am not. Instead, I’m sitting at home thinking why not be, and to be honest, I’m suffocating a bit. Yesterday I got a message from the hospital that my appointment was cancelled. They said my treatment was not authorized by my insurance company. And they said it might not work next week either.
For the past two and a half years, I have been receiving intravenous immunoglobulin therapy (IVIG infusions) to treat small fiber neuropathy (SSFN) associated with sarcoidosis. SSFN reflects peripheral nerve damage and causes dysfunction of the autonomic nervous system, also called dysautonomia. This autonomic dysfunction is what caused me to faint, fall and break my leg last year.
Without this treatment, I will likely see an increase in pain, numbness, and dizziness. When I had to go without IVIG for a few months to get the COVID-19 shots last year, I also experienced tremors ranging from twitching in one finger to uncontrollably shaking my whole body. At the time I thought I was having a seizure and worried I might have another serious illness to add to the list. My neurologist chalked it up to SSFN, so while that was a relief in a way, it also meant that these tremors could come back without IVIG treatment.
Even though I’ve been doing this for years, it still needs to be reauthorized every now and then. This means that every year I run the risk of losing this coverage and treatment. And it’s not just about IVIG.
Two years ago, my prior authorization for Acthar Gel (corticotropin depot injection) was denied. I have been on it for five years since I was diagnosed with sarcoidosis. I have often referred to it as my miracle drug because I had seen such a huge improvement, literally overnight. I was devastated when I was suddenly denied, and feared a return to my pre-Akhtar state of incapacity. Fortunately, the drug company had a patient assistance program that allowed me to receive my medication for the full year and a half of the appeals process.
I’m currently getting physical therapy to deal with my hip issues, but over the years I’ve been on and off more often. With conditions like sarcoid and fibromyalgia, I’ve had muscle weakness, fatigue, and what doctors call “deconditioning,” and physical therapy helps keep me from feeling worse. Too often, though, the insurance company required regular progress reports and when they didn’t see that I was getting better, they withdrew coverage. They didn’t seem to understand that treating a chronic illness is not the same as recovering from an injury.
There have been other times where I haven’t even made it that far. Most recently it was for the same hip. After numerous failed pain management procedures, I learned about a type of nerve block that can make a big difference. The pain management doctor said insurance wouldn’t cover it, so that was the end of that conversation. A few years ago they also refused to cover a specialized diagnostic test to determine the cause of my shortness of breath.
Every time this happens, I sit with fear, anger and frustration at medical decisions made – to my detriment – that are contrary to what my doctors and I have decided (not to mention I sit with the symptoms that don’t are treated). I feel powerless, helpless and almost hopeless.
I almost but never quite give up hope; it’s just not in me. And I realize that I am not powerless either. Not in the long run, anyway. Things like this motivate me to advocate for better access to healthcare.
I just got a text from my mom asking me what I’m doing on Wednesday. The only answer I could give was “I don’t know…maybe IVIG. Maybe recovering from the IVIG. Maybe he’s suffering without IVIG.” But I know I have a meeting with my US Senator’s office on Thursday.
It’s not fair, it’s not right, and it’s not easy to deny everyone access to the tests that lead to diagnoses or treatments for their symptoms. Despite everything I’ve been denied, I know I’m privileged to have good insurance through my husband’s union job. There are millions who do not have good insurance or no insurance at all. We all deserve better.
Note: Sarcoidosis News is a website for news and information about the disease. Does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified medical professional with any questions you may have about a medical condition. Never disregard professional medical advice or delay seeking it because of something you read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to stimulate discussion on issues related to sarcoidosis.