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 have to laugh at the nurses, still amazed at how much easier it has been since I put in a port-a-cath than when they had to try three, four or even nine times to get into a vein. Gotta take selfies with medical equipment for my weekly #InfusionDay social media posts.

But I’m not. Instead, I’m sitting at home thinking why shouldn’t I be, and honestly, I’m cooking a bit. Yesterday I got a text from the hospital saying my appointment was cancelled. They said my treatment was not authorized by my insurance company. And they said that even next week it might not work.

For the past two and a half years, I have been receiving intravenous immunoglobulin therapy (IVIG infusions) to treat sarcoidosis-related small fiber neuropathy (SSFN). 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 faint, fall, and break my leg last year.

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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 tremors in a single finger to uncontrollable whole-body tremors. At the time, I thought I was having a seizure and worried I might have another serious condition to add to the list. My neurologist attributed it to SSFN, so while that was a relief in a way, it also meant that those tremors could return without the IVIG treatment.

Even though I’ve done this for years, it still needs to be reauthorized from time to time. This means that every year, I risk losing that coverage and treatment. And it’s not just about IVIG.

Two years ago, my previous authorization for Acthar Gel (corticotropin depot injection) was refused. I have been on it for five years, since I was diagnosed with sarcoidosis. I have often called my miracle drug because I had seen such a remarkable improvement, literally overnight. I was devastated when he was suddenly denied and I feared a return to my pre-Aktar incapacitated state. Thankfully, the pharmaceutical company had a patient assistance program that enabled me to receive my medication for the full year and a half of the appeals process.

I’m currently getting physio to treat my hip problems, but I’ve generally been on and off 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 it from feeling worse. However, very often the insurance company required regular progress reports and when they didn’t see me improving, they pulled coverage. They didn’t seem to understand that treating a chronic illness is not the same as recovering from an injury.

There were other times I didn’t even get that far. Recently, it was for the same thigh. 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 wouldn’t even cover a specialized diagnostic test to determine the cause of my shortness of breath.

Every time it happens, I sit with the fear, anger and frustration of medical decisions being made – to my detriment – that are contrary to what my doctors and I have decided (not to mention sitting with symptoms that are not being treated ). I feel powerless, helpless and almost hopeless.

Almost, but never quite giving up hope; it’s just not in me. And I understand that I am not helpless either. However, not in the long run. This kind of thing makes me more motivated to advocate for better access to health care.

I just got a text from my mom, asking what I’m doing on Wednesday. The only answer I could come up with was “I don’t know… maybe IVIG. Maybe the cure from IVIG. Probably suffering without IVIG.” But I do know that on Thursday, I have a meeting with my US Senator’s office.

It’s not right, it’s not fair, and it’s not fair to deny someone 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 work. There are millions who don’t have good insurance, or who don’t have insurance at all. We all deserve better.

Note: Sarcoidosis News is strictly a news and information website about the disease. It 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 health care provider with any questions you may have about a medical condition. Never disregard professional medical advice or delay in 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 spark discussion about issues related to sarcoidosis.

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