My Insurance Overruled Doctor’s Orders. It’s Not the First Time.

[Joachim]

As I type this from my living room, all I can think about is that I shouldn’t be here. I should be at the hospital getting my weekly infusion. I should be laughing with the nurses, still amazed at how much easier it’s been since I had a port-a-cath inserted than when they had to try three, four, or even nine times to access a vein. I should be taking selfies with the medical equipment for my weekly #InfusionDay posts on social media.

But I’m not. Instead, I’m sitting at home thinking about why I shouldn’t be, and honestly, stewing a bit. I got a message from the hospital yesterday saying that my appointment was canceled. They said my treatment wasn’t authorized by my insurance company. And they said next week might not work, either.

For the past two and a half years, I’ve been getting intravenous immunoglobulin therapy (IVIG infusions) to treat sarcoidosis-associated small fiber neuropathy (SSFN). SSFN reflects damage to the peripheral nerves and causes autonomic nervous system dysfunction, also called dysautonomia. That autonomic dysfunction is what caused me to faint, fall, and fracture my foot last year.

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Without this treatment, I’ll 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 vaccines last year, I also experienced tremors, ranging from a single finger twitching to my whole body shaking uncontrollably. At the time, I thought I was having a seizure and worried that I might have another serious condition to add to the list. My neurologist attributed it to SSFN, so while that was a relief in some ways, it also meant that those tremors could return without the IVIG treatment.

Even though I’ve been doing this for years, it still has to be reauthorized every so often. That means every year, I run the risk of losing that coverage and treatment. And it’s not just for IVIG.

Two years ago, my prior authorization for Acthar Gel (repository corticotropin injection) was declined. I’d been on it for five years, since I was diagnosed with sarcoidosis. I’ve often called it my miracle drug because I’d seen such a tremendous improvement, literally overnight. I was devastated when it was suddenly denied, and I feared a return to my pre-Acthar incapacitated state. Thankfully, the pharmaceutical company had a patient assistance program that enabled me to get my medication for the full year and a half of the appeal process.

I’m currently getting physical therapy to address problems in my hip, but I’ve gotten it more generally on and off over the years. With conditions like sarcoidosis and fibromyalgia, I’ve had muscle weakness, fatigue, and what the doctors call “deconditioning,” and physical therapy helps me not feel worse. Too often, though, the insurance company required regular progress reports, and when they didn’t see me 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 I couldn’t even get that far. Most recently, it was for the same hip. After multiple unsuccessful pain management procedures, I learned about a type of nerve block that could make a big difference. The pain management doctor said that insurance wouldn’t cover it, so that was the end of that conversation. A few years ago, they wouldn’t cover a specialized diagnostic test to determine the cause of my shortness of breath, either.

Every time that 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 aren’t getting treated). I feel powerless, helpless, and almost hopeless.

Almost, but I never fully give up hope; it’s just not in me. And I realize that I’m not powerless, either. Not in the long term, anyway. This kind of thing gets me more motivated to advocate for better access to healthcare.

I just got a text from my mom, asking what I’m doing on Wednesday. The only answer I could give was “I don’t know … maybe IVIG. Maybe recovering from IVIG. Maybe suffering without IVIG.” But I know that on Thursday, I’ve got a meeting with my U.S. senator’s office.

It’s not fair, it’s not right, and it’s not just to deny anyone access to the tests that lead to diagnoses or treatments for their symptoms. Despite all that I’ve been denied, I know that I’m privileged to have good insurance through my husband’s union job. There are millions who don’t have good insurance, or who don’t have insurance at all. We all deserve better.

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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 physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have 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 pertaining to sarcoidosis.

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