As part of its effort to recognize people with rare diseases, the FDA has declared Feb. 29 to be Rare Disease Day. Speaking as somebody with one of those rare diseases, I find myself more than a little offended by this.
First, take a moment and haul out your calendar. What’s special about Feb. 29? Right, it’s Leap Day. Which means it only rolls around every four years. So unlike a whole host of other disorders that get their own day (which comes around once a year), week, or even month, I get official recognition once in a blue moon.
Second, while I’m sure the FDA are a bunch of busy beavers with much more common disorders, it would be nice if they did more than hold up a “We recognize you people with those weird diseases” sign every four years. How about working to push more meds through the pipeline that might help us? Or, as this excellent editorial in Nature suggests, work toward more innovative research such as genome sequencing. That would mean more to us than a ribbon of some color once every four years.
However, being a cynic by nature, I’m not counting on this. Why? Because I am acutely aware that I am of less interest to the pharmaceutical companies (and hence the FDA) than a patient with diabetes or multiple sclerosis. There’s money to be made in R&D for those patients who have identifiable conditions. Not so much for those of us rare beasties.
So forgive me, FDA, if I am less than enthused about your recognition of my rarity. You only have to acknowledge it once in a blue moon. I have to do so every day of my life.