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Schakowsky, Quigley, Fitzpatrick, Crow Introduce Bipartisan Bill to Support Access to Multidisciplinary ALS Care

December 20, 2022

  • Create a supplemental, facility-based payment to qualified facilities. Qualified facilities would be required to provide care in accordance with a multidisciplinary standard established by the Secretary of Health and Human Services.
  • Direct the GAO to conduct a study on ALS-related services ordinarily provided and the cost of those services.
  • Establish a baseline for the supplemental payment, which could be redetermined in 2025 based on the GAO study.

"Access to high-quality multidisciplinary care in ALS has been shown to extend survival and improve quality of life. As an organization whose leadership includes people living with ALS, we understand on a personal level how greater access to equipment, coordinated care and support improves people’s experience with this terrible disease,” said Andrea Pauls Backman, MBA, Chief Executive Officer of the Les Turner ALS Foundation. “The Medicare Payment Reform for People with ALS Act of 2022 will provide vital resources to support ALS care teams and empower people to make informed choices about their treatment.”

“Multidisciplinary care is one of the few evidence based practices that extends and improves the lives of people living with ALS," said Neil Thakur, Ph.D., Chief Mission Officer at The ALS Association. “The Association has certified a network of multidisciplinary ALS clinics across the country, and we are working ensure more Americans with ALS can access this highest standard of care. We thank Congresswoman Schakowsky for introducing the Medicare Payment Reform for People with ALS Act to address the needs of people living with ALS, their loved ones and their healthcare team.”

“Multidisciplinary clinics are essential to providing coordinated care for many patients with complex conditions, including those with ALS, and it is essential that the functions of those clinics are appropriately supported” said Orly Avitzur, MD, MBA, FAAN, President of the American Academy of Neurology. “Without appropriate reimbursement, clinics will struggle to keep up with the needs of their patients. Rep. Schakowsky’s leadership on this issue is critical to ensure timely access to quality patient care.”

Also known as Lou Gehrig’s disease, ALS is a debilitating and fatal disease that affects one in 300 people, approximately 30,000 Americans. Unfortunately, the average survival time after diagnosis is two to five years.