Last week, President Trump submitted his budget request to Congress. Included in the proposal are changes to funding for Medicaid, cuts to Social Security Disability Insurance (SSDI), cuts to the National Institutes of Health (NIH) and the complete defunding of the National ALS Registry at the Centers for Disease Control (CDC). The ALS Association is very concerned that these proposals will negatively impact people affected by ALS and will slow down the progress we have made in research for treatments and a cure. We do not believe this is a partisan issue – Members of Congress on both sides of the aisle have expressed concerns about the cuts contained in the President’s budget.
The President’s proposal includes the elimination of the entire budget of the ALS Registry, which would end funding for 13 extramural researcher-initiated studies that explore the causes of ALS. The end of the Registry means the end of the collection of vital information that is allowing researchers to identify disease patterns and risk factors of ALS. Further, the Registry helps directly connect people living with ALS with clinical trials and epidemiological studies. Without the National ALS Registry, the pace of ALS research could drastically slow down.
We are concerned that daily care for people with ALS could be impacted by this budget, as well. The President’s budget includes changes to funding for Medicaid and $72.4 billion in cuts to Social Security’s disability programs. These programs are lifelines for people living with ALS and their families as they help people with home health services, guarantee continued income and access to healthcare through Medicare eligibility.
We realize that the President’s proposed budget is the first step in a multi-step process. The appropriate committees in Congress are already meeting to develop the next budget and The ALS Association is meeting with them. Through the hard work of ALS Association staff and our advocates, we are making sure that members of Congress know the importance of ALS research, Medicaid and SSDI to our community. We are optimistic, based on the increase in NIH funding included in the FY17 budget, as well as because of statements by members of Congress. As the Congressional budget takes shape, The ALS Association will continue to update our Advocates and take appropriate action.
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Click here to read a joint statement from The ALS Association, the Muscular Dystrophy Association and the Les Turner ALS Foundation opposing the proposed budget.