Support the ALS Better Care Act

The ALS Better Care Act would improve Medicare reimbursement for multidisciplinary ALS clinics, thereby reducing delays and improving health outcomes for people living with ALS.

Multidisciplinary ALS clinics like our Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine provide coordinated, team-based care that helps people live longer and improve quality of life. However, without adequate Medicare reimbursement for these clinics, patients are forced to endure long wait times for services.

We strongly support this legislation, which was recently re-introduced in the U.S. House of Representatives and Senate.

Why it matters:

• Promising new ALS treatments are most effective when people living with ALS are diagnosed early and rapidly referred to a multidisciplinary clinic.
• ALS progresses quickly. Timely access to multidisciplinary ALS clinics helps people live longer by providing coordinated care, treatment options, emotional support, and the equipment needed to stay at home safely
• Multidisciplinary ALS clinics provide families with essential guidance on what to expect and how to manage care as ALS progresses. Without access to this support, families are left navigating a rapidly advancing disease alone, increasing anxiety and avoidable crises. People living with ALS often need respiratory support, therapy, nutrition care, and assistive technology at the same time. Due to the challenges of traveling with the disease, multiple appointments are very difficult for people living with ALS.
• Medicare does not adequately reimburse multidisciplinary ALS clinics for the high-level care they provide, leading to strained resources, long wait times, and delayed access to care and clinical research.

What the bill would do:

• The ALS Better Care Act would create a supplemental Medicare payment to support comprehensive ALS care.
• It would increase funding for multidisciplinary ALS clinics so they can reduce delays, lower costs, improve health outcomes, extend survival, and connect people to treatments and research earlier.
• Protect Medicare beneficiaries by ensuring no additional out-of-pocket costs.

The Les Turner ALS Foundation is proud to endorse the ALS Better Care Act alongside The ALS Association, I AM ALS, ALS United, The ALS Hope Foundation, American Academy of Neurology, and the Muscular Dystrophy Association.

We thank Reps. Jan Schakowsky (IL-09), Brian Fitzpatrick (PA-01), Jason Crow (CO-06), and Mike Quigley (IL-05) for introducing this legislation in the House (H.R. 7336), and Sens. Chris Coons (D-DE) and Lisa Murkowski (R-AK) for introducing companion legislation in the Senate (S. 3763).

Take action

The ALS Better Care Act has received bipartisan support in Congress, but it needs your help to achieve passage.

Please contact your U.S. Representative and Senators and urge them to act now in support of the ALS Better Care Act.

updated February 2026