After a lively day of sausage-making, a 21st Century Cures Act passed the House yesterday and now it's the Senate's turn to make some things happen. I think that this can provide some good opportunities to advance the fight against ALS. Increased NIH funding, FDA resources, and the Precision Medicine Initiative are all very important in my opinion.
But one item gave me pause when I saw the list of ingredients left in the House version:
Sure, a neurological disease surveillance system makes ultimate sense when there are so many devastating and unsolved neurological diseases. But wait... "a neurological disease surveillance system coordinated by the CDC..." Been there, done that, and it has not gone well.
Please, stop, look, and listen to us. We have an opportunity to do something great or to be part of a train wreck.
Today we have a tremendously expensive ALS Registry -- a neurological disease surveillance system coordinated by the CDC. It has failed to live up to its potential, and it has cost us taxpayers over $70 million to date. It has let us down on many levels. It has generated scant reports whose numbers nobody wants to use. It has been fraught with scope creep and gingerbread of questionable value and unrelated to delivering accurate and timely disease surveillance. And perhaps the most revealing problem of all has been its lack of transparency. This year the invitation-only annual meeting was blacked out and we have not see a transcript yet. The CDC doesn't not seem to want to talk about it except to the voluntary health agencies that lobby annually for its funding (and in a cozy arrangement receive hundreds of thousands of dollars in no-bid contracts).
So please, stop, look, and listen to us. Let's fix the CDC ALS Registry problem and move forward with something well-designed, nimble, transparent, and focused to provide valuable information on all neurological diseases. Please learn from our journey and don't be part of a 21st Century train wreck.