US lawmakers reintroduce bill to improve access to treatment for ALS
Bipartisan effort aims to address current gaps in Medicare payments
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The ALS Better Care Act aims to improve access to quality medical care for ALS patients.
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Current Medicare reimbursement issues create barriers to essential ALS care.
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The bill proposes an $800 Medicare payment per visit to fund ALS treatment.
A bipartisan team of U.S. lawmakers has reintroduced the ALS Better Care Act, a bill that aims to improve access to quality medical care for people with amyotrophic lateral sclerosis (ALS).
The legislation was introduced in the House by Republican Brian Fitzpatrick of Pennsylvania and Democrats Jason Crow of Colorado and Jan Schakowsky and Mike Quigley of Illinois. Companion legislation in the Senate was introduced by Lisa Murkowski, a Republican representing Alaska, and Chris Coons, a Delaware Democrat.
“Every year, thousands of people in the United States are newly diagnosed with ALS, with an average of 15 new cases each day. I watched as one of my dear friends suffered from this debilitating disease with little hope. While significant challenges remain, meaningful progress is being made in ALS clinical care,” Schakowsky said in a press release. “Specialized, multidisciplinary care has been shown to extend survival and improve quality of life for people with ALS. Our bill, the ALS Better Care Act, provides hope and ensures clinics can continue delivering lifesaving, comprehensive care to ALS patients.”
Financial barriers stand in way of patients accessing quality care
ALS is a progressive neurological disorder that causes muscle weakness and eventual paralysis. While currently there is no cure, a variety of treatments and supportive therapies are available that can help people with ALS live longer and maximize their quality of life. To get the best possible care, it’s recommended that ALS patients receive treatment from a multidisciplinary team of specialists, each of whom can help the patient manage specific aspects of the disease.
But even though multidisciplinary care is the best medical practice for ALS patients, there are logistical and financial barriers that stand in the way of patients accessing quality care. According to the ALS Association, one major barrier is issues with insurance coverage through Medicare, the federally funded program that provides health insurance for people age 65 and older in the U.S.
“Medicare reimbursement fails to reflect the complexity, frequency, and team-based nature of ALS care, leaving even top-tier clinics underfunded, overstretched, and forced to limit the number of patients they can see,” the association stated in a press release. “These barriers delay diagnosis, restrict access to care, and prevent many people from being evaluated for clinical trials, where time is critical.”
To help address this issue, the ALS Better Care Act would create a new Medicare payment to help fund ALS care. Under the act, Medicare would pay a flat $800 fee at each doctor’s visit for ALS care. Advocates say this additional funding would help fill gaps in current Medicare reimbursement structures for ALS.
“For people living with ALS, access to specialized care is not optional, it’s life-extending,” said Melanie Lendnal, senior vice president of policy and advocacy at the ALS Association. “The ALS Better Care Act fixes a broken Medicare payment system so clinics can provide the timely, coordinated care that improves quality of life, extends survival, and gives more people a chance to participate in clinical trials.”
Legislators are once again pushing for Congress to pass the act
The ALS Better Care Act was originally introduced in the House in 2023 by a team that included many of the same legislators, but it did not advance beyond committee. Now the legislators are once again pushing for Congress to pass the act.
“Multidisciplinary care has been proven to extend life and improve quality of life, yet outdated Medicare rules continue to stand in the way,” Fitzpatrick said. “This two-party solution removes those barriers by fully covering team-based care, supporting telehealth, and allowing families to focus on what matters most: their health and their time together.”
Murkowski stressed the bipartisan nature of the effort.
“This legislation will provide critical investments in research and care to improve the quality of life for those living with ALS,” she said. “We must come together as legislators, healthcare providers, researchers, advocates, and caretakers to use every last resource at our disposal to show up for those affected by this ruthless disease.”
The legislation is endorsed by advocacy organizations, including the ALS Association, the Les Turner ALS Foundation, and the Muscular Dystrophy Association (MDA).
“This legislation represents a critical step toward removing financial and structural barriers that prevent people living with ALS from accessing optimal care,” said Sharon Hesterlee, PhD, president and CEO of the MDA. “If enacted, the bill would reduce the need for frequent travel, support more coordinated and comprehensive care both in and outside the clinic, and expand opportunities for research participation. Together, these improvements would significantly strengthen access to the high-quality care the ALS community deserves.”
