The standard estimate is 30,000. I’m so sick of hearing it. We have 30,000 people in the U.S. with ALS. The truth is, we don’t really have a clue. We cobbled together that number with scant data, using widely disparate sources, from the ether that is our medical system. What good has it done? Seems to me it only deepens the perception of ALS as an orphan disease.
Sure, ALS is rare. But it kills quickly. Saying there are only 30,000 people living with ALS is akin to counting up the number of people who currently suffer from a fatal car accident. I’ll leave the math to you.
Earlier this year Congress passed the 2006 Health & Human Services (HHS) budget, which included $900,000 to start a nationwide ALS registry. Intended to jumpstart the ALS Registry Act, the amount approved is a fraction of the estimated $25 million needed to create a way to track the prevalence of ALS in the U.S. Such a registry would not only provide more accurate numbers about age, race, and gender, it would help identify environmental and genetic factors and connect patients with better targeted clinical trials. It’s a stepping stone toward a cure.
Hope is on the way right? Guess again. Not long after the Center for Disease Control (CDC) was told to allocate the money, President Bush eliminated the project in his 2007 HHS budget proposal. The registry was not the only victim of course. Bush slashed over $1.5 billion in similar programs designed to improve the health of our citizens.
Needless to say, those of us advocating for ALS are deeply disappointed. Despite sponsorship by 96 senators and representatives (69 Democrats, 26 Republicans, 1 Independent), the effort to implement the ALS Registry Act has suffered a major setback.
But hey, we’ve got $900,000 to blow this year right? Better make it count. Just a drop in the bucket really. Probably costs more to fly Air Force One to a political rally. Or to convene congress for a single patient. Or to drop an extra bomb on an Iraqi village. More literal bang for our buck.
Am I a little bitter? Yah you betcha’. I see us spending over $150 million a day in Iraq and I wonder. I wonder if perhaps this administration’s self-proclaimed goal of “compassionate conservatism” is just so much ballyhoo. So is my ranting here about it I suppose, for all the good it will do.