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

Today, U.S. Representatives Mike Quigley (IL-05), Jan Schakowsky (IL-09), Brian Fitzpatrick (PA-01), and Jason Crow (CO-06) introduced bipartisan legislation to ensure that ALS multidisciplinary clinics, which bring together teams of specially trained health care professionals who work to address the many needs of people living with ALS, can continue to provide quality, collaborative, life-extending treatment.

The Medicare Payment Reform for People with ALS Act of 2022 extends Medicare reimbursement for ALS multidisciplinary clinics and the multifaceted care they provide. These 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, physical, and speech therapists, in addition to mental health providers, neurologists, social workers, nurses, and dietitians.

"During my time in Congress, I have had the privilege of meeting with leaders in the ALS community and developing a deeper understanding of the complexities of this disease. I've learned that for nearly all those diagnosed, ALS is a death sentence. I have committed to changing this grim reality by supporting solutions to develop improved treatments and ultimately find a cure for ALS," said Congressman Mike Quigley. "This legislation is a part of that effort. People living with ALS should not be burdened by excessive healthcare costs when fighting this disease, and this bill will extend Medicare reimbursements to pay for types of treatment that are currently not covered. Many thanks to Congresswoman Schakowsky on her work to eliminate this unnecessary barrier to care."

"Specialized multidisciplinary ALS clinics not only improve a patients' quality of life, but they also extend the lifespan of patients suffering from ALS. I watched as one of my dear friends suffered from this debilitating disease with little hope," said Congresswoman Jan Schakowsky. "Our bill provides hope and ensures Medicare will reimburse these clinics so they can continue providing top-notch, comprehensive care to ALS patients."

"It is crucial that the more than 30,000 Americans living with ALS and their families have the necessary resources and services they need," said Congressman Brian Fitzpatrick, Co-Chair of the ALS Caucus. "The Medicare Payment Reform for People with ALS Act of 2022 would provide supplemental payments to facilities offering specialized care for ALS patients and establish consistent support for those who are battling this debilitating disease."

"Those suffering with ALS deserve access to quality, innovative care. This critical legislation extends Medicare reimbursement to the ‘multidisciplinary' treatment many ALS patients need. As a co-chair of the ALS Caucus, I'm proud to deliver relief so these clinics and patients can focus on high-quality care instead of unnecessary red tape," said Congressman Jason Crow, Co-Chair of the ALS Caucus.

The Medicare Payment Reform for People with ALS Act of 2022 would:

• 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."

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.