Once in a Blue Moon

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.

 

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8 Responses to Once in a Blue Moon

  1. pennylrichardsca says:

    The FDA didn’t pick the date. It’s an international thing, started in Europe (EURORDIS is the main agency involved). And I think in the US it was mostly coordinated through NORD (National Organization for Rare Disorders). Neither EURORDIS or NORD are government agencies–they’re non-profits, patient advocacy groups.
    http://www.eurordis.org/
    http://www.rarediseases.org/

  2. Penny says:

    Rare Disease Day is not every four years–it’s an annual event, like most awareness days–it’s just that in 2008 and 2012 (so far), they took advantage of the Leap Day/Rare connection and scheduled it on February 29.
    http://www.rarediseaseday.org/article/why-rare-disease-day

    • thatwordgrrl says:

      Meh. Still think it was a bad PR move.

      • I’m not sure how effective “awareness days” are in general, anyway (the research is mixed). But if the date of it this year’s Rare Disease Day gave many people the impression it’s a quadrennial thing instead of annual, that can’t be helping, for all the reasons you outline.

  3. Tracie says:

    I am not sure about it being ‘bad’ PR – on Leap Day, it doesn’t get lost in the shuffle. It stands out a bit more, which I think is helpful for rare disease sufferers.

  4. To confirm, Rare Disease Day is held every year on the last day of the February. And every four years that is truly a rare day — Leap Day!

    I see the FDA trying to be more supportive of rare disorders. Were you aware of the free event they hosted, the first “FDA Rare Disease Patient Advocacy Day”? Learn more here: http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm293213.htm

    Also, many pharma companies are realizing (which other companies like Genzyme & BioMarin have known for years) that rare disease therapies CAN be profitable. Pfizer and GSK are among some of the big pharma companies who have recently started rare disease divisions.

    • thatwordgrrl says:

      Eileen, I appreciate your input here! Something to think about.

      It just seemed like all the PR made it sound like once every four years. Which, although that’s not the case, I wonder what sort of impression it leaves.

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