Year-End Review of
The ALS Association’s 2005 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 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.

Update – Congress provided $900,000 to launch a national ALS registry as part of the FY 2006 appropriations bill that funds the Department of Health and Human Services.  The spending bill, which was enacted into law at the end of 2005, is an important first step in establishing a permanent national ALS registry.  However, it still is critical that Congress pass the ALS Registry Act (H.R. 4033/S. 1353), which authorizes $25 million to establish a national ALS registry.  A bipartisan group of more than 75 House Members have cosponsored the bill, which was introduced in the House on October 7, 2005.  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 nearly 20 cosponsors. 

• Continue funding for ALS specific research through the Peer Reviewed Medical Research Program (PRMRP) at the Department of Defense (DOD). In 2004, Congress provided $50 million in funding for the PRMRP as part of the FY 2005 DOD Appropriations bill and recommended ALS as one of a small handful of diseases to be studied under the program.

Update – On December 30, 2005, President Bush signed into law the FY 2006 DOD Appropriations bill.  For the first time, the legislation includes an ALSA requested $2.6 million “line-item” to fund ALS programs.  This funding represents a guaranteed revenue stream for ALS research.  In previous years the bill has recommended, but not guaranteed, funding for ALS research through the PRMRP.  The $2.6 million line-item is nearly triple the funding awarded for ALS through the PRMRP in FY 2005. That funding, announced in December, is a $979,000 grant awarded to Duke University.  

The line item funding was the direct result of ALSA efforts to raise awareness of the connection between military service and ALS, including our outreach to Appropriations Committee Chairman Jerry Lewis (R-CA) and the publication of the ALSA paper, ALS in the Military: Unexpected Consequences of Military Service.  ALSA also worked with Reps. Dave Reichert (R-WA) and Lois Capps (D-CA) to circulate a "Dear Colleague" letter in the House urging support for ALS research funding at DOD.  As a result of the Dear Colleague, more than 60 other Members of Congress (view list) sent a letter to Secretary of Defense Donald Rumsfeld supporting ALS research at the DOD.  In addition, for the fourth consecutive year, the Senate version of the DOD Appropriations bill recommended that ALS continue to be a disease that is studied under the PRMRP. 

• 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.  The Lifespan Respite Care Act would authorize federal grants to the states and other entities at the state level to help families access quality and affordable respite care services. 

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.  Reps. 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 50 cosponsors.

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