The new movie "Extraordinary Measures" has my mind running in circles.
No, this column is not a film review. Sorry.
I'm not actually writing about the movie itself, but what it calls to mind for me.
As engrossing as the Harrison Ford and Brendan Fraser flick may be, let's face it. It's at least partly about a medical breakthrough … about how even life-saving treatments are sometimes only possible with mega-funding. Especially for rare conditions, where the payoff of success--the profit potential--is dubious.
Sad but true.
Yet what's bugging me is the way this message echoes the Muscular Dystrophy Association's mantra. You know, "Send money or these kids will die!" Or words to that effect.
I've never liked that message, the implied threat. I feel it exploits kids with disabilities, turns them into one-dimensional objects of pity.
Well, guess what? MDA IS claiming a role in the true story on which "Extraordinary Measures" is based.
The true story involves the development of Myozyme, the only FDA-approved treatment for the rare, progressive neuromuscular condition called Pompe. Which affects one in 40,000 people, according to www.pompe.com--depleting their muscles until they become too weak to live. Myozyme isn't a cure, but it can slow Pompe enough to save lives.
It turns out MDA really was one of the behind-the-scenes funders of this life-saving intervention. I double-checked.
"Many organizations and individuals who worked over many decades on Pompe disease should take credit for Myozyme," Lori Gorski, associate director of corporate communications at Genzyme Corp., the Cambridge, Mass.-based pharmaceuticals concern that developed Myozyme, told me by e-mail. "The MDA helped support patients who took part in clinical trials of Myozyme and also sponsored early research in Pompe disease."
The disability-rights movement seeks to make the world better for all people with any type of disability. Our mission is therefore broader than any clinical lab's can ever be.
After all, what happens to those facing chronic pain or imminent death while they're waiting for a cure? Or those who aren't interested in one.
What's more, a more tolerant, accessible and inclusive society benefits everyone.
Enough! I welcome reactions from readers.