Like many, I found this article by Brian Vastag, who is suffering from an orphan disease, heartbreaking. And like the Mistress of the Animals, I also realize, given ideological constraints, the NIH budget is a zero-sum game (boldface mine):
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.
Nonetheless, it’s worth noting that the institute formerly known as NCCAM (the National Center for Complementary and Alternative Medicine) and which has been rechristened The National Center for Complementary and Integrative Health (NCCIH) has a budget of $123,000,000.
There might be some alternatives here.