Quigley, Schakowsky, 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 the ALS Better Care Act, bipartisan legislation to ensure that ALS multidisciplinary clinics can provide quality, interdisciplinary care at no-cost for 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 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.”

“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.”

“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.”

“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.”

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.

"The ALS Better Care Act will relieve stress on ALS care teams, reduce wait times, and make a tremendous difference for people living with ALS and their families, who are struggling under the burdens that come with this terrible disease," said Laura Freveletti, Chief Executive Officer of the Les Turner ALS Foundation. "Multidisciplinary ALS care has been proven to extend the survival of people with ALS, and this vital legislation will give families the chance to focus on staying healthy and making the most of every moment together."

“Multidisciplinary care has been proven to extend and improve the lives of people living with ALS," said Calaneet Balas, CEO of The ALS Association. “We have a certified network of multidisciplinary ALS clinics across the country, and we are working ensure more Americans living with ALS can access this highest standard of care. We thank Representatives Schakowsky and Fitzpatrick for their leadership in addressing the needs of people living with ALS, their loved ones and their caregivers.”

"MDA is proud to endorse the ALS Better Care Act. This effort is a key step in breaking down financial barriers that stand in the way of those with ALS receiving optimal care. If passed, this bill could let those living with ALS travel less often to access care, receive more streamlined and comprehensive care both in and away from the clinic, and have more opportunities to participate in research. Overall, this bill would improve access to much needed care for the ALS community,” said Joel Cartner, Director of Access Policy at Muscular Dystrophy Association.

"Access to multidisciplinary clinics can be a critical component of quality health care for individuals with ALS. Sadly, we also know that many people living with ALS lack access; some living hundreds of miles away from the nearest clinic. Our goal is that with stronger reimbursement through the ALS Better Care Act we can strengthen and encourage the expansion of more clinics, thereby improving equitable access to quality care. We appreciate Congresswoman Schakowsky’s continued leadership in Congress and unwavering commitment to the ALS community,” said Andrea Goodman, CEO of I AM ALS.

“As a neurologist that treats patients with ALS, I understand how important multidisciplinary clinics are for patient care. For both adult and pediatric neuromuscular disorders, multidisciplinary care is considered the standard of care, and has been associated with improved health outcomes. The ALS Better Care Act will ensure that multidisciplinary care for patients with ALS is appropriately reimbursed, allowing patients to receive the comprehensive care they deserve,” said Carlayne E. Jackson, MD, FAAN, President, American Academy of Neurology.

Also known as Lou Gehrig’s disease, ALS is a debilitating neurodegenerative disease that affects the nerve cells that control voluntary muscle movement. ALS impacts approximately 30,000 Americans. Unfortunately, the average survival time after diagnosis is two to five years.