As I write this from my living room, all I can think is that I shouldn’t be here. I should be in the hospital getting my weekly infusion. I should be laughing with the nurses, still amazed at how much easier it has been since they put a port-a-cath on me than when they had to try three, four or even nine times to access a vein . I should be taking selfies with the medical team for my weekly #InfusionDay social media posts.
But I’m not Instead, I’m sitting at home thinking why shouldn’t I, and honestly, stewing a bit. Yesterday I got a message from the hospital saying my appointment was cancelled. I was told that my treatment was not authorized by my insurance company. And they said next week it might not work 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 damage to peripheral nerves and causes dysfunction of the autonomic nervous system, also called dysautonomia. This autonomic dysfunction is what caused me to pass out, fall, and fracture my foot last year.
Without this treatment, I probably see increased pain, numbness, and dizziness. When I had to go without IVIG for a few months to get my COVID-19 shots last year, I also experienced tremors, ranging from a single twitching finger to my whole body shaking uncontrollably. At the time, I thought I was having a seizure and worried that I might have another serious illness to add to the list. My neurologist chalked it up to SSFN, so while that was somewhat of a relief, it also meant that these tremors might return without the 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 you are at risk of losing this coverage and treatment. And it’s not just for IVIG.
Two years ago, my prior authorization was denied for Acthar Gel (corticotropin depot injection). I had been there for five years, since I was diagnosed with sarcoidosis. I have often called it my miracle drug because I had seen such tremendous improvement literally overnight. I was devastated when he suddenly refused me, and I feared returning to my pre-Acthar state of incapacity. Fortunately, the drug company had a patient assistance program that allowed me to get my medication throughout the year and a half of the appeal process.
I am currently doing physical therapy to address hip issues, but have been on and off more generally over the years. With conditions like sarcoidosis and fibromyalgia, I’ve had muscle weakness, fatigue, and what doctors call “deconditioning,” and physical therapy helps keep me from feeling worse. All too often, however, the insurance company required periodic progress reports, and when they didn’t see me getting better, they would drop 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 I haven’t even been able to get that far. More recently, it was for the same hip. After several unsuccessful pain management procedures, I learned about a type of nerve block that could 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 didn’t cover a specialized diagnostic test to determine the cause of my shortness of breath.
Every time this happens, I sit with the fear, anger and frustration of medical decisions made, to my detriment, that are contrary to what my doctors and I have decided (not to mention sitting with the symptoms that are not being treated). I feel powerless, helpless and almost hopeless.
I almost, but never give up hope; it’s just not in me. And I realize I’m not powerless either. Not in the long run, anyway. This kind of thing motivates me more to advocate for better access to health care.
I just got a text from my mom, she was wondering what I’m doing on Wednesday. The only answer I could come up with was “I don’t know…maybe IVIG. Maybe recovering from IVIG. Maybe 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 just about denying anyone access to tests that lead to diagnoses or treatments for their symptoms. Despite all that I have been denied, I know that I am privileged to have good insurance through my husband’s union job. There are millions who don’t have good insurance, or no insurance at all. We all deserve better.
Note: Sarcoidosis News is strictly a disease news and information website. It does not provide medical advice, diagnosis or treatment. This content is not intended as a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified health care provider with any questions you have about a medical condition. Never disregard or delay seeking professional medical advice because of something you read on this website. The views 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.