In 1998, Congress failed to act on the ALS Research Treatment and Assistance Act (HR 2009). The Task Force first wrote on the matter in a letter to congressional leaders in October 1997. In short, the bill would have amended the Social Security Act to: 1) waive the 24-month waiting period for Medicare coverage of individuals with ALS; 2) provide Medicare coverage of drugs used for treatment of ALS; and 3) amend the Public Health Service Act to increase federal funding for research on ALS.

The bill has been reintroduced as HR 353, "Amyotrophic Lateral Sclerosis (ALS) Treatment and Assistance Act of 1999" (minus the "research" aspect).

The following letter was signed by members of the MDA National Task Force Steering Committee, individually addressed and mailed on March 30, 1999, to:

Rep. Bill Archer, Chairman, House Ways and Means Committee
Rep. Charles B. Rangel, Ranking Minority Member, House Ways and Means Committee
Rep. Thomas J. Bliley, Jr., Chairman, House Commerce Committee
Rep. John D. Dingell, Ranking Minority Member, House Commerce Committee
Rep. Michael Bilirakis, Chairman, Subcommittee on Health and Environment
Rep. Sherrod Brown, Ranking Minority Member, Subcommittee on Health and Environment

RE: AMYOTROPHIC LATERAL SCLEROSIS (ALS) TREATMENT AND ASSISTANCE ACT OF 1999 — H.R. 353

Dear Representative:

The Muscular Dystrophy Association's National Task Force on Public Awareness is a group of adults affected by neuromuscular diseases who serve in a voluntary capacity as spokespeople for and advisers to MDA on matters of importance to people served by the Association. ALS is one of the 40 neuromuscular diseases encompassed by the Association's programs of research and services. It is a progressive neuromuscular disease which affects approximately 30,000 individuals in the United States. The disease leads to the wasting of muscles, paralysis and usually death within three to five years from the time of diagnosis. There is no known cure for ALS, but aggressive treatment of its symptoms can somewhat extend the lives of those with the disease, provide them comfort and enhance their independence.

We urge your support of the Amyotrophic Lateral Sclerosis Treatment and Assistance Act of 1999 which amends the disability insurance provisions of the Social Security Act to waive the 24-month waiting period for Medicare coverage for individuals with ALS. This amendment is important because ALS usually affects individuals over 50 years of age, many of whom are qualified to receive Medicare. However, the disease has such a rapid course that many of them are in urgent need of care before the two-year waiting period is over.

The Amyotrophic Lateral Sclerosis Treatment and Assistance Act also provides Medicare coverage for any drug approved by the Federal Food and Drug Administration for use in treatment or alleviation of ALS-related symptoms. One such drug already exists and a number of others are in clinical trials. Passage of the Act will allow more individuals with ALS to benefit by advances in research that have taken place and are anticipated in the immediate future.

Very truly yours,

The Members of the Steering Committee of the
MDA National Task Force on Public Awareness

/s William Altaffer, Esq.
/s Jan Blaustone
/s Shelley C. Obrand
/s Chris Rosa