Over the past decade, I’ve been using the same medical insurance. My insurance covered almost everything, including medicine, hospital stays, surgeries, physical therapy, and more. Most of the time patients with rare diseases rarely change their insurance unless they must. I don’t have to go into details about how important insurance is for us, but because of the process and challenges of finding the right one to cover the specific things you need, we stay with what works for us. 

But over time, change comes. The changes that come with insurance are rarely good and usually always disappointing. The major disappointment is when our insurance decides they can no longer cover certain medical equipment, services, and medications. As a Pompe disease patient, this has recently been happening to me and others, and it’s getting more ridiculous and confusing.

It started last year when I noticed certain medical supplies I use were getting replaced by poor-quality supplies. Of course, the reason behind that was pretty obvious. With COVID-19 everywhere, I understood the shortage of supplies  But I continued having issues with some medical equipment, and when I would call to get a replacement or repair, I was told my insurance no longer covers my requests and that I would have to cover the costs. 


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So, yes, I ended up paying out of pocket, but that’s not the horrible part. Even though medical equipment is incredibly expensive, that’s nothing compared to losing the service that we need and medication that helps us stay alive. So far, I’ve lost hours of my health aide service, the service to repair my equipment, coverage of medications, and coverage of physical therapy. 

Do you want to know the crazy part about all this? When we talk about things like this, everyone’s response is always ‘they can’t do that.’  Well, they can do whatever they want to because everything is about money. As amazing as the medical world is, half of it is about future technology and the other half is about making money. When you depend on someone without giving them something in return, you end up in the position of no choice but to take what they give you. 

That’s what it feels like with health insurance. But should our medical insurance be allowed to make those kinds of decisions for us? Many of us depend on our health insurance to survive and I believe our well-being is not considered with many of the choices our insurance makes. 

If it’s a scientific fact that I need my breathing machine to breathe, why deny the coverage when it’s known that I can’t afford it. If my doctor says I need it, why should I have to appeal, to beg and prove that I need it? 

Medical insurance is a lifesaver but it’s flawed. Rare disease patients would benefit from laws that protect us from circumstances like I just described. My insurance just recently and unexpectedly decided that I no longer need the number of hours I’ve had for years of caregiver services. They cut my hours with no explanation except that they’re not paying for 7 hours a day anymore because they don’t believe I need all those hours. 

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If it was the case that I didn’t need as much help anymore, I would understand, but they fail to look into our situations to make a current, detailed assessment. Instead, we’re cut off from vital aspects of our coverage and left with only the option to fight for a benefit I’ve been using and dependent on for years.

As a result, I was forced to engage in unnecessary doctor appointments, gather endless paperwork, and wait weeks to hear a response only to hope that it was good news. It’s beyond unfair and I know that there are so many others that are going through worse situations.

Something has to be done about this. We are drained from fighting a system that seemingly doesn’t care about us. Our voices aren’t enough; we need our physicians to help and to have enough heart to stand up for us. The power of doctors and nurses coming together could be powerful.