When Money Is More Important to Hospital Administration Than Saving a Rare Disease Patient's Life


On April 5, 2017, I went in for a surgery, which was to expected to be a successful and smooth outpatient procedure. When I woke up, I was hit with horrible pains from my complex regional pain syndrome (CRPS) and spasms from my super rare disorder, Stiff Person syndrome (SPS). I can’t say I didn’t see that coming though. However, my medical team will ill-prepared to deal with my complex needs.

The best part was that my head, which was the area they cut open and drilled into, didn’t even hurt. Oh, the irony! Afterwards, I got X-rays taken to confirm everything went well and all was good. They got me up to my inpatient room and I was OK for a few hours. Not pain-free, but it was manageable. At about 7:30 that night, the wall of CRPS pain and SPS spasms hit me like a Mack truck. I sobbed and sobbed as I shook and spasmed all night. They offered me a painkiller, which I turned down because it doesn’t work for my CRPS nerve pain. The nurse and charge nurse were baffled and felt so horrible as I shook and spasmed for hours, sweating so badly the bed was soaked. I struggled to breathe due to pain and diaphragmatic spasms and my heart rate soared to the 170s while my blood pressure dropped. This continued for about 14 hours because the doctors didn’t know how to deal with my rare conditions. Eventually, one of my old doctors was permitted to step in and help me out. He prescribed the medications I needed at the dosages I needed and got my custom compounded medicines approved. I quickly started to stabilize. However, in the process, he put his job on the line to help me, to give me a standard treatment, because saving me was more important than what the hospital administration thought.

You see, the hospital administration doesn’t let him treat rare disease patients because one of his most successfully used treatments isn’t profitable enough for the hospital. Therefore, over 700 patients with rare and chronic illnesses were left to fend for themselves. Over 700 kids and young adults don’t have access to life-saving treatment because it doesn’t make enough money. I get that money is important, as medicine is a business too, but what is the purpose of a hospital if it can’t help patients?

I ended up having to stay a total of six days after my “outpatient surgery,” but it would have been much worse if the doctor hadn’t gambled his job and helped me. Simply by being my doctor, he could have lost his job. Why must doctors who are only trying to act in the best interests of their patients have to risk not having a job because they were the one individual who could help the patient or save their life?

While this is my experience (and one I’ve had many times before at a variety of hospitals), this is not an isolated problem to my local hospital. Brilliant and well-respected doctors trying to help their patients often have their jobs threatened each time they agree to help rare disease patients. This is not OK, and more awareness needs to be bought to the issue. Alone, we are rare, but together, we are many!

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Thinkstock photo by sudok1

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