H.R.5663/S.3258: ALS Better Care Act

On September 21, 2023,  U.S. Representatives Jan Schakowsky (IL-09), Brian Fitzpatrick (PA-01), Jason Crow (CO-06), and Mike Quigley (IL-05) introduced the ALS Better Care Act, a bipartisan legislation to ensure that ALS multidisciplinary clinics can provide quality, interdisciplinary care at no-cost for ALS patients.

ALS multidisciplinary clinics bring together teams of specially trained health care professionals who work to address the many needs of people living with ALS, allowing them to receive comprehensive care during a single visit. This includes occupational, respiratory, and physical therapists; mental health providers; neurologists; social workers; and nurses. These evidence-based multidisciplinary clinics exist across the United States, helping ALS patients and their families avoid the need to have multiple, separate appointments. Additionally, many multidisciplinary ALS clinics are involved in one or more categories of ALS-specific research, thereby providing ALS patients with opportunities for research and clinical trial participation.

The bill states the following goal:

“To amend title XVIII of the Social Security Act to provide coverage of ALS-related services under the Medicare pro- gram for individuals diagnosed with amyotrophic lateral sclerosis, and for other purposes.”

The ALS Better Care Act aims to:

  1. Establish a Medicare supplemental, facility-based payment for ALS-related services. Starting in 2025, qualified providers or clinics would receive a single payment of $800.
  2. Instruct the Government Accountability Office to deliver a report to the Department of Health and Human Services  recommending a single payment amount for ALS-related services.
  3. Direct the National Institute of Neurological Disorders and Stroke at the National Institutes of Health to submit a report to Congress and publish it on their agency website. This report would outline the challenges in administering and staffing clinical trials, propose actions to address these challenges and offer legislative recommendations.
Congresswoman Jan Schakowsky

“Progress is being made on ALS. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients’ overall quality of life. I watched as one of my dear friends suffered from this debilitating disease with little hope,” said Congresswoman Jan Schakowsky. “Our bill, the ALS Better Care Act, provides hope and ensures clinics can continue providing top-notch, comprehensive care to ALS patients.”

Congressman Brian Fitzpatrick

“ALS is a devastating disease that affects thousands of American families annually, and we must ensure that patients have access to the complex care they need,” said Congressman Brian Fitzpatrick. “As co-chair of the ALS Caucus, I am grateful to join this bipartisan effort to support individuals battling this disease.”

Congressman Jason Crow

“ALS patients deserve access to timely, comprehensive care,” said Congressman Jason Crow, Co-Chair of the ALS Caucus. “This bill would ensure Medicare reimbursements for the critical multidisciplinary care many ALS patients need. As co-chair of the ALS Caucus, I support this key legislation allowing clinics to focus on delivering high-quality care instead of unnecessary red tape.”

Congressman Mike Quigley

“The ALS community consists of some of the strongest, most determined individuals I have had the pleasure of working with. Thanks to them, I’ve developed a deeper understanding of the complexities of this disease and the grim reality for those diagnosed. These individuals are already fighting the battle of their lives—they should not be burdened by excessive health care costs,” said Congressman Mike Quigley. “The ALS Better Care Act will help solve this problem by extending Medicare reimbursements to pay for types of treatment that are currently not covered. I’m proud to be working with Congresswoman Schakowsky on this legislation to eliminate unnecessary barriers to care.”

On Rare Disease Day, 2/29/2024, the House Health Subcommittee met to discuss several pieces of legislation which have an impact on those living with ALS, including the ALS Better Care Act.

The ALS Better Care Act is endorsed by several leading health organizations, including the ALS Network. We are grateful to our legislators and passionate ALS advocates who collaborate at all levels - local, state, and federal - to improve awareness and resources for people affected by ALS. This is ALS advocacy in action!