2004 Year in Review;
Public Policy and Grassroots Successes

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 Public Policy Priorities

We want the 108th Congress to ...

• Continue funding for ALS specific research in the fiscal year 2004 Department of Defense Appropriations bill (DOD) Peer Reviewed Medical Research Program (PRMRP). ALS was included as one of just twenty-one diseases eligible for this funding in the 2004 fiscal year budget and researchers have submitted applications, which are currently being reviewed by the DOD. Continued funding for ALS specific research in the 2005 fiscal year budget will allow researchers to continue moving forward towards finding a cause, treatment and eventual cure in regards to environmental factors.

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Update, January 11, 2005: Department of Defense Doubles Funding for ALS Research to $2.7 Million

Update, July 29, 2004: Congress Passes Defense Department Bill That Includes ALS Research Funds

 

• To amend title II of the Social Security Act to authorize waivers by the Commissioner of Social Security of the 5-month waiting period for entitlement to benefits based on disability in cases in which the Commissioner determines that such waiting period would cause undue hardship to terminally ill beneficiaries. This bill (H.R. 2598) will allow ALS patients to receive their SSDI payments almost immediately.

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• Increase funding in the National Institutes of Health (NIH) budget in fiscal year 2004 by 8% for ALS within the National Institute for Neurological Disorders and Stroke (NINDS) and allow NINDS to coordinate, and collaborate on, ALS research with other appropriate NIH Institutes, particularly the National Institute of Environmental Health Sciences (NIEHS).

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• To amend the Internal Revenue Code of 1986 to provide incentives for charitable contributions by individuals and businesses. This bill would allow non-itemizers to deduct charitable contributions between $250-$500 and allow retired people to make tax free contributions from their IRA to a charitable organization. This bill would also increase the amount of money allocated for Social Security Block Grants (SSBG) to the states, which our chapters would be eligible to apply for.

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