Rare Disease

Part 1 of 2 In April 2023, we launched a campaign targeting my United Healthcare Medicare (Dis)Advantage Overlords. The goal was to get them to actually pay for my infusion to treat Complex Regional Pain Syndrome and Small Fiber Neuropathy. These infusions keep me from being bedbound. I spent two years locked in a bed. I’m not going to do that again.

For the last five years, I’ve struggled to cover the full cost of my infusions and multiple medications, on top of my AARP Medicare Advantage Walgreens United Healthcare Health Insurance premiums, copays, and coinsurance. Like many, my rent went up last year by $400 all at once. The money had to come from somewhere, and the solution became rationing my infusions.

Organizations helped me to create and share our videos, and a petition. Covering the cost to keep me around. After one or two days, United Healthcare reached out to me. Within a week I had a very excited service coordinator telling me that my infusion was approved! The prior authorization approved an office visit and one hour of an infusion. The doctor’s office was still working on approval for the other three hours of infusion, along with the common medication and fluids needed. My thought process was that I could wait for July to have the infusion. I’ve tried to stay ahead of things, and I tell myself that I can hang in there.

Just weeks away from infusion, and I am suffering. I wanted to make it longer, but it was getting tough. I called to find out about moving up the infusion. I’m told that my doctor’s office can’t get United Healthcare to approve things like normal saline to administer the infusion or even standard vital sign monitoring. They had been trying since we got the last prior authorization.

That means filing another appeal, a formal letter trying to ask United Healthcare employees, with little to no understanding of what we are talking about, permission to get care. My providers have become experts in the rare neuropathic and genetic ailments that have caused me to have cancer twice. They have learned and studied things that they did not learn in med school, where they were told that rare diseases existed, but that’s about it. Now I have to beg people who sit in front of computers, knowing nothing about the medical reasons behind the medicine. They get to approve or deny the life-saving treatments that my providers say I need. I have no choice in any of this.

It’s a horrible thing to have to beg to be worthy of life. As someone with CPTSD, it’s really damn hard. I’ve fought my entire life to have a reason to live. The entirety of my childhood is the equivalent of a novel written by VC Andrews or Margaret Atwood. There’s even a potential chapter by Stephen King. I’ve caught myself in vacant stares into space questioning why my life matters.

Now I have to go back to the insurance company with another appeal to get them to cover everything needed for the infusion and for the correct date. I wrote to my senators, Hassan and Shaheen. I asked them to write a letter on my behalf requesting for this to be reviewed. I was also hoping that there would be a way to fix this permanently so that I don’t have to go through so much fighting. The senators did get more attention, and suddenly I had all these phone calls because they don’t like hearing from United States senators. Things started moving, and it looked like everything would be approved.

Well, that appeal did get approved, but not for the right date. They approved the date the request was filed, not the date of the infusion. How can they approve a treatment to put me under sedation for four hours, and also have me lucid and able to talk with an insurance person on the same day? The new prior authorization had everything that was needed fully approved, so I figured that they just had to fix the date. It seems so simple, right? Guess again.I spent the next couple of weeks trying to get in touch with the same people I had successfully dealt with before. I get voicemail after voicemail, and no one calls me back. But they did process the claim. They didn’t pay the doctor the right rate and denied the vital sign monitoring code as “not substantiate service.” Are you kidding me?! They paid a bit over $200, leaving me with approximately $400 to pay.

I have to message everyone again. I have to say it all over again and beg all over again. It’s a simple mistake. All the insurance has to do is change the damn date! I’m told I need to go through the “process” again. I’m even chastised and accused of not being “willing” to go through “the process.” What the heck have I been doing?! We started in April to get coverage for my July infusion. Now it’s September, and I’m still fighting for my doctor to be paid correctly and for charges not to fall on me.

Take away the infusion and I d