Heartfelt Plea for Orphan Diseases and the Reality of NIH funding

Jul 14 2015 Published by under Uncategorized

I read this, a plea to Francis Collins about an orphan disease, titled " Dear Dr. Collins: I’m Disabled. Can the N.I.H. Spare a Few Dimes?" and my heart went out to the author, a science writer.

But then it was deja vu all over again. No, I do not want Mr Vastag, or anyone to suffer. Yes, I want All The Dizezes to be cured. But... a few dimes for this one, comes from, where? What other disease should be we take those dimes from? The politicians all have views on what we should and should not fund. Obese lesbians, or Moms with Munchausen's? Diseases of aging Silent Generation Oldies who are going to die anyway? Children of the poor who ought to have picked their parents more carefully?

Right now, its a zero sum game. Mr Vastag is targeting the wrong person. Sure, if his plea is poignant enough, maybe Collins will redirect some money, or instruct an institute, or do whatever grey-area things NIH does. It's why children's hospitals are so good at raising money.

https://sp.yimg.com/ib/th?id=JN.7NWodty5v5cfa7IdfdTyJg&pid=15.1&P=0But what needs to be done to truly solve the mouths-at-the-trough problem is increase funding to NIH. And in a country where the majority of people think "National Security" is vastly more important than even health, this is not going to happen without a lot of work.


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