ALS Organizations Urge Congress to Pass the ALS Better Care Act

September 8, 2026

Dear Sen. Thune, Sen. Schumer, Rep. Johnson, and Rep. Jeffries:

We write on behalf of the 35,000 people living with Amyotrophic Lateral Sclerosis (ALS) and their families. This advocacy is the mission of the groups listed below, who have worked with Congress to advance multidisciplinary care for people living with ALS. As Congress returns in September and considers year-end legislative priorities, we urge you to pass the ALS Better Care Act (S.3763/H.R. 7336) and ensure that its provisions are incorporated into any final legislative vehicle that provides an appropriate opportunity for enactment. This vital legislation would provide a modest, supplemental, facility-based payment to bridge the shortfall of Medicare reimbursement for ALS multidisciplinary care.  

ALS is a devastating, progressive neurological disease with no cure and very few treatments. It is characterized by progressive degeneration of nerve cells in the spinal cord and brain. People living with ALS lose the ability to move, are likely to fall, and eventually become wheelchair users and completely paralyzed. They also lose the ability to swallow, breathe, and complete activities of daily living as the disease progresses. Without multidisciplinary care, vulnerable people living with ALS are more likely to require more costly care such as emergency room visits, hospitalizations, and nursing home care.

Multidisciplinary care is provided by specialized ALS clinics by a suite of physicians and other health care professionals, including physical, respiratory, and speech therapy. This care also includes mental health for people living with ALS. Medical evidence demonstrates that ALS multidisciplinary care improves quality of life and survival, and the American Academy of Neurology deems this to be a central care measure for ALS.

However, Medicare does not adequately reimburse the multidisciplinary services provided in ALS clinics. As a result, most ALS centers are forced to either cut multidisciplinary care, serve fewer patients, or rely on philanthropic support to provide quality care. While this is a problem for all ALS clinics, it is a particular problem for clinics in rural areas or disadvantaged urban settings where the need is great, but there are few resources.

The ALS Better Care Act would amend the Medicare statute to establish a facility-based, supplemental payment for qualified health care organizations that provide qualified multidisciplinary ALS-related services not otherwise reimbursed under Medicare. Patients, who already have a significant cost-sharing burden, would not be asked to share the cost of the supplemental payment. This support would allow ALS physicians and care teams to focus on delivering care, rather than curtailing services due to reimbursement shortfalls.

The consequences of these Medicare reimbursement shortfalls extend beyond the financial stability of ALS clinics. Multidisciplinary care helps people living with ALS maintain their independence and quality of life for as long as possible by ensuring that their complex medical needs can be addressed in a coordinated setting and reduces the likelihood that gaps in care lead to avoidable emergency visits or hospitalizations. Stable ALS clinics also provide the necessary clinical infrastructure and specialist expertise to connect patients to emerging research and clinical trials. Ensuring these clinics can continue operating is especially critical in rural and other underserved areas, where patients may already travel significant distances to reach a clinic and have few, if any, alternative options for multidisciplinary care. The ALS Better Care Act would address these challenges by providing sustainable support for the multidisciplinary care that people living with ALS rely on.

Congress has made meaningful progress in recent years to support people living with ALS and their loved ones. Maintaining that momentum is critical. We urge both chambers to work together to ensure that the ALS Better Care Act is enacted this year, before the end of the 119^th Congress.