Tuesday, April 18, 2006


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.


Anonymous said...

Scot you've hit the proverbial nail on the head. What is compassionate about a nation that will spend billions of dollars on death and destructin and spend so little on trying to save the lives of our own people. But that is why we speak out. That is why you must continue to write your blog. Your voice helps us to see what we would otherwise be blind to. So, thank you. Thank you for speaking out and thank you for sharing your thoughts with us.

John Howe said...

I read your update with a great deal of dismay. This current administration has committed just about every illegal act possible and we just stand by and wonder, what next!
A timely article accompanied a letter from my brother in Sarasota, FL today. It must be from their local paper and was written by Hal Bodley. The title is: Larsen sets up night of perfection.
The gist of the article is to bring together all living pitchers who have thrown a perfect game for a charity event November 4, 2006.
All proceeds will go to several charities, the main one being ALS.
Potential participants: Jim Bunning, Sandy Koufax, Len Barker, Mike Witt, Tom Browning, Dennis Martinez, Kenny Rogers, David Wells, David Cone and Randy Johnson.
Private funding seems to be the only dependable way of working towards a cure. I know our family and many others are trying to do their part to make this happen.
When the weight of the world seems to be on your shoulders, Scott, please know there are alot of us out here who care greatly and want to do anything possible to expedite research and relieve you so some of that burden.
Our best to you and your wonderful family.......

Angie said...

Hi Scott, My name is Angie. I live in Summerville SC. My daughter is Kimberly, she comes to your home to give you a hand.She thinks so highly of you and your family. Congrats on the new baby, she is just beautiful. I was just reading your web pages and had to write to tell you how strong and couragious you are. You are in my thoughts and prayers