Advocacy Update
The ALS Association Testifies Before Congress
April 19, 2007

The Advocacy Department is pleased to share with you that at a Capitol Hill hearing earlier this week, The ALS Association called on Congress to speed ALS drug development and ensure that people with the disease have timely access to new treatments. The Association was invited to testify at an April 17, hearing of the House Energy and Commerce Committee, Subcommittee on Health, which has jurisdiction over several of The Association’s top public policy issues, including the ALS Registry Act and the Food and Drug Administration. The Subcommittee convened the hearing to examine the reauthorization of the Prescription Drug User Fee Act (PDUFA), legislation designed to provide additional resources and funding to the FDA to help expedite drug reviews.

The Association was the only patient organization invited to testify at the hearing, which also included witnesses representing the FDA, the Pharmaceutical Research and Manufacturers of America (PhRMA), the Biotechnology Industry Organization (BIO) and Consumers Union. Jim Thew, a PALS and advocate from Chicago who is featured in The Association’s ALS Awareness Month campaign, testified on behalf of The Association. A 35 year-old father of three and Navy veteran, Jim educated the Subcommittee about the disease and shared his personal experiences living with ALS. Jim’s testimony provided Members of Congress with a better understanding of the true nature of the disease and why Congress must take action to bring new treatments for ALS from the lab to the bedside as soon as possible. Jim’s testimony to Congress is available by clicking here or www.alsa.org/policy/article.cfm?id=1106.