About the legislation

ALS is a financially, physically, and emotionally devastating disease that is currently 100% fatal. Most people living with ALS will die within two to five years after diagnosis. Unfortunately, there are few treatments and no cures. However, treatment at an ALS multidisciplinary clinic has been shown proven to extend survival and improve quality of life while living with ALS. This provides people living with ALS (PLWALS) and their loved ones with more quality time together.

What is an ALS multidisciplinary clinic? There are more than 200 of them around the US. These clinics bring together teams of specially trained health care professionals to address the many needs of PLWALS. This approach allows health care professionals to communicate with each other more easily and PLWALS to receive comprehensive care during a single visit. These evidence-based multidisciplinary clinics help ALS patients and their families avoid the need to have multiple, separate appointments in different locations. Additionally, some multidisciplinary ALS clinics are involved in ALS-specific research, thereby providing PLWALS with opportunities to participate in research and clinical trials.

While multidisciplinary clinics provide much needed support and resources to people living with ALS, clinics are often burdened by financial constraints. This bipartisan bill seeks to rectify these challenges by increasing the amount ALS providers at multidisciplinary clinics receive from Medicare for seeing PLWALS. This allows the clinics to focus on patient care and quality of life without the added stress of excessive costs and bureaucracy.

In addition, the ALS Better Care Act directs the National Institute of Neurological Disorders and Stroke (NINDS) to submit a report to Congress on the challenges facing ALS clinical trial sites and solutions to these challenges. This could lead to faster clinical trial enrollment, which will speed up the science and get us closer to a cure.

More information:

One-pager Summary
Senate Text of Bill
House of Representative Text of Bill
One-pager Summary 2

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