You Need a Project Management Degree

Managing rare disease requires skill and patience

Rare disease is not for weaklings. It takes a lot of strength to manage a rare disease.

That might sound doubly strange coming from someone whose rare disease impacts their muscles. But in the past few days, telling my story over and over to doctors, I’ve come to realize how important management skills are in navigating the rare disease life.

For example, I’m writing this from a Neuro ICU bed where I’ve been for several days. More treatments lie ahead, with hopes of going home over the weekend. Looks like this will be an 11-day stay. But more on that in a moment …

My first job in management was at 16. I started as a cook at Kentucky Fried Chicken. I must have shown some initiative because five months later I was cross-trained on the front and promoted to assistant manager on night shift. I learned a lot about managing people, working processes and systems, and dealing with customers. I’m sure I was awful at it, but it taught me a lot.

Fast forward to New Year’s Day 1996 when I left a newspaper job to launch a marketing and communications business with my wife. It was just us, but by the end of the year we’d hired our first employee. We sold the company to a strategic partner in 2020, having grown it to 30 employees serving clients throughout the eastern half of the U.S., landing on the Inc. 5000 list in the process.

I give all that as background to establish the fact that I have many years of management experience. And I’ve put much of it to use in managing myasthenia gravis. A perfect example is the series of events that led me to this ICU bed.

In 2021 I was doing well with a course of treatment that consisted of oral meds and IVIg infusions every four weeks. For the most part, everything was under control. Then in January of 2022 I was switched to a different brand of IVIg. I had a reaction and was hospitalized. After five days, I came home to resume my IVIg infusions but at a lowered dose. I never fully regained control of the symptoms.

Vyvgart, a new medication from argenex, was the hot topic in the myasthenia gravis world. Results sounded promising. Working with my neurologist, we pursued approval to try it. It took months, but I finally started the new infusion in August. Results were good, but didn’t last. And then there were the dreaded respiratory infections, known side effects of the drug. Some cycles weren’t too bad. The final cycle earlier this year was awful.

The infection exacerbated my MG systems, and I started declining. My neurologist and I decided to return to IVIg. By the time we could jump through all the hoops, it was too late. I had completely lost my swallow and couldn't take my meds. One infusion in, I had to go to the emergency department. They admitted me and did two more days of IVIg to see if that would get me over the hump.

It did not. I’m in the midst of a series of plasma exchange treatments that appear to have me on the right path. What routine we pursue when I get back home remains to be determined.

The details of this story involve spreadsheets to track treatment dates and outcomes. Charting symptoms. Communicating with insurance and prior authorization contractors. Scheduling with infusion companies. Presenting quality data to my neurologist to help him make informed decisions. Advocating for myself when I do not agree with certain actions by various parties. (Example: When I arrived at the emergency department last week, a resident was all but ready to intubate me. It wasn’t time for that, and I knew it. We would have been skipping an important step.)

Those living with a rare disease have much more to deal with than the disease itself. I’ve worked with some fine project managers in my career, and I’m sure they would be impressed with the skills needed to manage the rare disease world.

In upcoming issues, I want to provide some practical tips for managing life with a rare disease. If you have some ideas to share, please drop them in the comments or email them to me at hello@liveliferare.com.

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