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The ALS Association's Advocacy Day
and Public Policy Conference

May 11 - 13, 2008
Washington DC


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The ALS Association's 2007 Public Policy Priorities

We want the 110th 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 is expected to be introduced in the 110th Congress by Majority Leader Harry Reid (D-NV) and Representative Eliot Engel (D-NY)

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.

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.

The ALS Association's 2006 Public Policy Priorities

We want the 109^th Congress to:

Establish a National ALS Registry by passing legislation to authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide ALS registry. The establishment of a national 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.

Update - On October 7, 2005, Representatives Eliot Engel (D-NY) and Lee Terry (R-NE) introduced The ALS Registry Act, H.R. 4033, in the House of Representatives. A bipartisan group of 202 House Members have cosponsored the bill. Senators Harry Reid (D-NV) and John Warner (R-VA) introduced the Senate companion bill, S. 1353, on June 30, 2005. The bill currently has 46 cosponsors.


Support Amyotrophic Lateral Sclerosis (ALS) specific research at the Department of Defense's (DOD) Neurotoxin Exposure Treatment Research Program (NETRP). Established in 1997, the NETRP was created to focus on biomedical research designed to improve the treatment of neurological disorders, including ALS, and to identify the causes of these diseases and how to prevent them. Currently, no funding appropriated to the NETRP is used to conduct ALS specific research despite the fact that studies repeatedly have shown that military personnel are at a greater risk of dying from ALS than those in the general population. Studies conducted by the Department of Defense and the Department of Veterans Affairs have found that Gulf War veterans are twice as likely to develop ALS than those who did not serve in the war. Moreover, researchers at Harvard University reported last year that people with any history of military services, from World War II to Vietnam, are approximately 60% more likely to die from ALS than those who did not serve in the military. And, according to the latest statistics from the VA ALS Registry, we are seeing the disease in veterans who have served in the military since the start of the current conflict in Iraq. To read about ALS in the military, click here.

Update - On June 2, 2006, Representatives Vito Fossella (R-NY) and Anna Eshoo (D-CA) circulated a "Dear Colleague" letter in the House of Representatives in support of ALS funding at the Department of Defense's (DoD) Neurotoxin Exposure and Treatment Research Program (NETRP). Forty-two members of Congress signed on to the letter, which was delivered to the Chair and Ranking Member of the Appropriations Committee Defense Subcommittee. Click here to view the letter.

Establish a National ALS Registry by passing legislation to authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide ALS registry. The establishment of a national 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.

Update - On October 7, Representatives Eliot Engel (D-NY) and Lee Terry (R-NE) introduced The ALS Registry Act, H.R. 4033, in the House of Representatives. A bipartisan group of more than 60 House Members have cosponsored the bill. Senators Harry Reid (D-NV) and John Warner (R-VA) introduced the Senate companion bill, S. 1353, on June 30, 2005. The bill currently has 15 cosponsors.

Continue funding for ALS specific research through the Peer Reviewed Medical Research Program (PRMRP) at the Department of Defense. Last year, Congress provided $50 million in funding for the PRMRP as part of the FY 2005 DOD Appropriations bill. Congress also recommended ALS as one of just 20 diseases, down from 21 in 2004, to be studied under the program. In early 2005, the PRMRP awarded two grants totaling over $2.7 million for ALS research, more than double the funding from last year.

Update - On October 7, the Senate passed the FY 2006 DOD Appropriations bill, and included $50 million in funding for the PRMRP. The bill also recommended ALS as one of a handful of diseases to be studied under the program. A Senate-House conference committee currently is working to resolve the differences between the two Chamber's versions of the bill. Earlier this year, on June 20, 2005, Representatives Dave Reichert (R-WA) and Lois Capps (D-CA) along with a bipartisan group of more than 60 other U.S. Representatives sent a letter to Secretary of Defense Donald Rumsfeld in support of continued funding for ALS research through the PRMRP.  The letter was part of a "Dear Colleague" circulated in the House by Reps. Reichert and Capps.

Enact the Lifespan Respite Care Act, legislation that improves the quality and availability of respite care services for people with ALS, their families and caregivers. Virtually every family who is touched by ALS has a need for respite care services. Respite care provides temporary relief to ALS caregivers and allows them much needed time off, while also providing quality care for people with ALS. The Lifespan Respite Care Act, legislation which passed the Senate in 2003, would help meet the needs of families impacted by ALS. The bill authorizes federal grants to the states and other entities at the state level to help families access quality and affordable respite care services. Specifically, the bill encourages the establishment of state and local respite care programs, expands and enhances respite care services in the states, and improves statewide dissemination and coordination of respite care.

Update - On June 21, 2005, Senators Hillary Clinton (D-NY) and John Warner (R-VA) introduced the Lifespan Respite Care Act of 2005 (S. 1283). A bipartisan group of more than 20 Senators have cosponsored the bill. Congressmen Michael Ferguson (R-NJ) and Jim Langevin (D-RI) introduced H.R. 3248, the House version of the bill, in July 2005. The bill has more than 45 cosponsors.

2004 Year in Review;
Public Policy and Grassroots Successes

As The ALS Association (ALSA) prepares to announce priorities for the 109^th Congress, which will be the focus of this year’s Advocacy Day and Public Policy Conference, following is an overall view of the legislative and grassroots successes realized in 2004 – successes that are the direct result of the efforts of ALSA Chapters and PALS to speak out and deliver the ALS message to Capitol Hill.

Although additional details follow, ALSA reports that Congress responded to our calls for increased research funding for ALS by approving funding for both the Peer Reviewed Medical Research Program (PRMRP) at the Department of Defense (DOD) and the National Institute for Neurological Disorders and Stroke (NINDS) at NIH.  In fact, ALS was included in the DOD funding bill for the third consecutive year, and more than $2.7 million recently was awarded for ALS research through the PRMRP.  Funding for NINDS and NIH also were increased this year.  While the increases were not as high as in previous years, NINDS funding received a greater increase than many other NIH Institutes.

Additionally, ALSA made strides in the fight to ensure that the new Medicare prescription drug benefit will cover those medications needed by people with ALS.  Thanks to ALSA’s efforts, it now appears likely that Riluzole will be covered by health plans offering the drug benefit, which takes effect in 2006.  In addition, the Advocacy Department is working with the Food and Drug Administration (FDA) on its “Critical Path Initiative” to identify changes in the FDA regulatory process that could lead to the development of more FDA-approved drugs to treat ALS. 

These goals could not have been achieved without the grassroots efforts of ALSA Advocates to tell the ALS story on Capitol Hill and throughout the year.  Those efforts included record attendance at last year’s Advocacy Day – more than 685 individuals from 43 states attended Advocacy Day and met with a record 389 different Members of Congress.  In addition, throughout the year the “I Took the Extra Step” program generated grassroots advocacy at Walks to d’Feet and other events, producing more than 17,400 letters to Congress urging support for ALSA’s priorities – more than three times the number of letters from 2003.

These successes demonstrate that grassroots advocacy delivers.  ALSA looks forward to realizing even greater successes in 2005 as we continue to light the way for a treatment and cure for ALS.

Additional details about ALSA’s 2004 legislative priorities and grassroots support can be found below. Contact Pat Wildman, Director of Federal Advocacy Outreach, at pwildman@alsa-national.org or 1-877-444-ALSA, with questions or requests for additional information.

 2004 Advocacy Priority Review and Legislative Recap for the 108th Congress 

 2003 Advocacy Priority Review and Legislative Recap for the 108th Congress