Public Policy Priorities - The ALS Association

The ALS Association’s 2007 Public Policy Priorities

We want the 110^th Congress to:

Pass the ALS Registry Act, legislation that would authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide ALS registry. The establishment of a national ALS registry will help identify the incidence and prevalence of ALS in the U.S. and collect data which is urgently needed for ALS research, disease management and the development of standards of care. A national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS. The ALS Registry Act was introduced in the 110^th Congress by Majority Leader Harry Reid (D-NV) and Representative Eliot Engel (D-NY).

On December 19, Congress passed legislation to provide an additional $3 million in funding for the ALS registry at the Centers for Disease Control and Prevention. The funding builds upon and expands the pilot projects already underway at the CDC and represents a $2 million increase over last year (click here for additional information) Earlier this year, on November 14, the Senate Committee on Health, Education, Labor and Pensions (HELP) passed the ALS Registry Act by unanimous voice vote. The Committee’s action comes less than a month after the House of Representatives passed the ALS Registry Act by an overwhelming vote of 411-3. Click these links for additional information about the HELP Committee vote and the House vote, including video footage and the text of the debate on the House floor. To help pass the ALS Registry Act in the Senate, please visit the Advocacy Action Center of our website.

Click here for additional information about efforts to establish a national ALS registry.

Include funding dedicated for ALS specific programs at the Department of Defense (DOD). Studies, including those conducted by the DOD, Department of Veterans Affairs and researchers at Harvard University, repeatedly have shown that ALS occurs at a greater rate in military veterans. By funding ALS specific programs at the Department of Defense, Congress will enable important ALS research to continue at DOD, help to determine why those in the military are at a greater risk of the disease, and ensure that our nation takes appropriate action to protect the health and lives of our military men and women who each day risk their own lives in defense of this country. Importantly, research conducted by the DOD also will yield important clues and data about ALS that will benefit all people suffering from the disease and will help this nation make progress in finding a treatment and cure for ALS.

Click here to view a letter to Secretary of Defense Robert Gates signed by 85 Members of the House of Representatives. The letter urges the Department of Defense to increase funding for ALS research. A list of those signing the letter is available here.

Support initiatives, such as the reauthorization of the Prescription Drug User Fee Act, that will speed the development of new treatments for ALS. Currently, only one drug has been approved by the Food and Drug Administration (FDA) specifically for the treatment of ALS. Unfortunately, Riluzole, which was approved by the FDA in 1995, only has shown modest effects, prolonging life by just a few months. However, Congress and the Administration can help change this by acting quickly to reauthorize the Prescription Drug User Fee Act (PDUFA). The law, which will expire if Congress fails to act this year, provides much needed resources to the FDA that enable the agency to speed patient access to new treatments. As proposed by the FDA in 2007, PDUFA also includes increased funding for FDA’s Critical Path Initiative, a program that can tear down the obstacles and barriers that hinder innovation and slow the development of life-saving and life-enhancing new drugs and biologics. However, as Congress works to reauthorize PDUFA, they should ensure that efforts to improve the safety of prescription drugs do not hinder access to breakthrough treatments. This is critically important to people with ALS, a disease that has no cure and is fatal in an average of two to five years following diagnosis. For people with ALS, it is vital that Congress and the Administration partner with the ALS community and help us to bring new therapies from the lab to the bedside as soon as possible.

On September 27, 2007, the President signed into law legislation to reauthorize the Prescription Drug User Fee Act. Click here for additional information on this important issue.