Ashley Barnes and #VoicesForReeve: Leading the Reeve Foundation's Advocacy Charge on September 25 Sponsored by Lifeward

April 2024 marked a triumphant victory for the spinal cord injury (SCI) community as the Centers for Medicare and Medicaid (CMS) revised their policy to include reimbursement of personal exoskeletons for medically eligible Medicare beneficiaries. This decision is effective for claims made on or following April 1, 2024. The achievement is not only a momentous step towards expanding access to life-changing technology for individuals living with SCI but also a pivotal example of how successful advocacy can lead to meaningful change. Prior to this decision, the only major coverage for this device since 2015 has been the U.S. Department of Veteran Affairs (VA). Now, almost 40% of individuals with SCI are insured by payers who can provide reimbursement for medically eligible beneficiaries. 

One of the champions who played a critical role in advocating for access to this device is Ashley Barnes, a certified Christopher & Dana Reeve Foundation Peer & Family Support Program Mentor and Regional Champion. For nearly a decade, Ashley has also worked with Lifeward towards a mission not just to provide insight into her personal experience utilizing an exoskeleton device but also to create an access pathway for her peers to receive coverage for devices of their own. Utilizing her experience and her voice, Ashley has found success in her advocacy not through isolated action but through persistence. While many may have been discouraged by the inevitable denials and challenges along the path to change, for Ashley, the ‘no’s’ only “lit up her Texas personality” and fueled her resolve to continue pushing for what she believes in.

Lifeward has been a pioneer for the advancement of technology that widens the possibilities and redefines movement for people living with disabilities. The medical device company created the first exoskeleton system approved by the U.S. Food and Drug Administration (FDA) for home and community use in 2014. Research has shown exoskeleton devices to be correlated not only with mobility-related benefits but also to benefits associated with common secondary complications of SCI, such as the reduction of pain and spasticity and improved bowel function.¹ Exoskeletons expand the use of this wearable assistive technology beyond the walls of rehabilitation centers out into the community. Since its FDA approval, the company has continued to lead the medical device industry in working towards improving access for people living with paralysis by highlighting its breakthrough technology and the lived experiences of those utilizing it.

CMS’s decision to provide coverage for personal use exoskeleton devices is a considerable success for the community, one which comes from many individuals' collective advocacy and tireless action. “It takes a village and a voice,” Ashley says. She shares, “It’s important for all people living with a disability to believe in themselves and fight the fight even when it feels exhausting.” We are deeply grateful to Lifeward, Inc. for their generous support as the Gold Sponsor of the second Congressional Virtual Advocacy Day, which will be held on September 25 in honor of Christopher Reeve’s birthday and during Spinal Cord Injury Awareness month. Their commitment to our cause has been instrumental in making this event possible.

Nearly 100 advocates will discuss the importance of the Paralysis Resource Center (PRC), advocate for increased federal funding for SCI Research & share personal stories about the caregiving crisis.