WASHINGTON, DC – Congressman Brian Fitzpatrick (PA-01), Congressman Jason Crow (CO-06), Congresswoman Jan Schakowsky (IL-09), and Congressman Mike Quigley (IL-05) introduced the ALS Better Care Act, bipartisan legislation to ensure that ALS multidisciplinary clinics can provide quality, interdisciplinary care at no-cost for ALS patients.

“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  Fitzpatrick. “As co-chair of the ALS Caucus, I am grateful to join this bipartisan effort to support individuals battling this disease.”

“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.”

“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.”

“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 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.”

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.

Specifically, the ALS Better Care Act would:

  • Create a supplemental, facility-based payment in Medicare for ALS-related services. On or after 2025, a single payment amount of $800 must made to qualified providers or clinics.
  • Direct the GAO to submit a report to HHS recommending a single payment amount for ALS-related services.
  • Direct the NIH’s National Institute of Neurological Disorders and Stroke (NINDS) to submit a report to Congress and publish it on their agency website. The report must address the (1) challenges in administering and staffing clinical trials, (2) actions to address the challenges, and (3) legislative recommendations.

The ALS Better Care Act is endorsed by several leading health organizations.