On July 4, 2025, “The One Big Beautiful Bill” was signed into law. It includes deep cuts to healthcare programs that people living with ALS and their caregivers rely on: Medicaid, Medicare, and the Affordable Care Act (ACA). These cuts, totaling $1 trillion, and other provisions in the bill put health coverage at risk for an estimated 17 million people and hold devastating consequences for people living with ALS and their families.
ALS is a rapidly progressing disease that weakens the muscles needed to move, swallow, and breathe. Most people live only two to five years after an ALS diagnosis. People with ALS and their caregivers urgently need access to coordinated multidisciplinary care and services.
Members of the ALS community already face significant challenges navigating our healthcare system. They do not have time to waste on red tape. These cuts will result in even longer delays and more denials, higher out-of-pocket costs, increased administrative hurdles, fewer opportunities to see needed specialists, and growing concerns about the quality and safety of nursing home care.
Caregivers are a vital part of the ALS support system, yet they are often overlooked. Many rely on Medicaid themselves, because providing full-time care for a loved one with ALS may force them to give up paid employment. According to KFF, among all Medicaid recipients under the age of 65, 12% are not able to work due to caregiving.
Severe cuts to Medicaid will likely force states to limit access to home and community-based services, which are essential for people living with ALS to remain supported in their homes. With rural healthcare providers already beginning to close as a result of these cuts, ALS families who struggle with transportation may be forced to travel several hours for the basic care they need – further straining their time, budget, and ability to access urgently needed care in the face of a rapidly progressing disease. Individuals may also be required to repeatedly prove they are “disabled enough” to avoid work reporting mandates, a process that is not only burdensome but often results in eligible individuals losing critical coverage due to paperwork errors.
This bill offers no meaningful protections for people with disabilities, and puts people living with ALS, caregivers, and their families at risk. The ALS community will feel the weight of these harmful decisions. Policies that impose new work requirements or cut Medicaid access put both people with ALS and their caregivers at risk. These families are already facing one of the most devastating diseases imaginable; they should not have to fight for the basic care and support they need.
Our Commitment
At the Les Turner ALS Foundation, we are strengthening our advocacy at the state and federal levels, collaborating with partners to protect access to essential care, and providing support to people living with ALS, caregivers, and their families through our Support Services Team.
We will continue offering guidance on insurance navigation and available services, helping families understand how these changes may affect them and where to turn for support. Together, we will keep fighting for a future where no one faces ALS alone.
Join MDA’s Advocacy Institute: Medicaid and the Path Forward on Tuesday, July 15 at 6 p.m. CT to learn more about what was included in the final bill, how it affects Medicaid and other essential health programs, and what lies ahead. Register here.
