If you’re living with ALS, or caring for someone who is, you’re used to hearing about “policy” and “funding” updates that can feel distant or hard to connect to daily life.
But some of the latest developments out of Washington could have a real impact on access to care, research progress, and treatment options, both now and in the near future.
Here’s what’s happening, and why it matters for you.
More Funding for ALS Research and Access to Care
The federal government’s 2026 spending plan includes new funding for ALS research and programs, thanks in large part to advocacy from people in the ALS community.
In total, there’s about $45 million more for ALS efforts than last year.
What does that mean in practical terms?
- More support for research aimed at finding treatments
- Expanded programs that help people access investigational (not yet approved) therapies
- Continued investment in understanding ALS and improving care
Some of the key funding areas include:
- Increased funding for the ACT for ALS program, which helps people access experimental treatments
- A new investment in cutting-edge ALS research through ARPA-H
- Continued funding for research through the National Institutes of Health and Department of Defense
While not every funding goal was met, this is still meaningful progress, and it helps keep momentum moving forward.
A Program That is Already Showing Results Could Continue
One of the most important programs right now is ACT for ALS, and it may soon be renewed. This program was created to help people who don’t qualify for clinical trials still access investigational treatments. Just as importantly, it ensures that what’s learned from those experiences contributes to research.
So far, it’s already making a difference:
- Hundreds of people with ALS are expected to receive investigational treatments
- Dozens of clinics across the country are participating
- Some programs even allow remote participation, reducing travel burdens
For many families, this creates options where there previously were none.
Lawmakers are now discussing how to extend and strengthen this program so it can continue helping people with ALS.
Why Access to Testing and Biomarkers Matters
You may hear more conversations about “biomarkers” and genetic testing in ALS, and for good reason. These tools are becoming increasingly important for:
- Diagnosing ALS earlier
- Making more informed care decisions
- Matching patients with the right clinical trials
However, there’s a policy discussion underway about how these discoveries can be patented.
ALS United® has raised concerns that if certain biomarkers or genetic relationships become too restricted, it could:
- Limit access to testing
- Increase costs
- Slow down research progress
The goal is to protect innovation while making sure patients and doctors can still access the tools they need.
Ongoing Challenges: Access to Ventilators and Respiratory Care
One area where many families still face serious challenges is getting timely access to ventilators and respiratory support.
Recent national reporting has highlighted issues like:
- Delays in receiving equipment
- Insurance coverage barriers
- Shortages in home care support
These challenges can have real consequences, sometimes leading to hospital stays or added stress for caregivers.
That’s why ALS United® is asking patients and families to share their experiences.
If you’ve faced delays or barriers, your story can help identify what’s going wrong and push for changes that improve access for others. Helpful details include:
- What you need and when
- What was delayed or denied
- How it affected your health or daily life
- Any financial impact
You can share anonymously, and your experience can make a difference.
Focus on Veterans Living with ALS
Another important effort is focused on veterans. Veterans are about twice as likely to develop ALS, but there’s still a lot we don’t fully understand about why.
A proposed bipartisan bill would:
- Study ALS trends among veterans
- Look for ways to reduce risk
- Improve access to clinical trials and research through the VA
This is an important step toward better understanding, and ultimately improving, care for veterans living with ALS.
What This Means Going Forward
Progress in ALS doesn’t happen overnight, but it is happening.
More funding, better research tools, expanded access to treatments, and growing awareness of care gaps are all steps in the right direction.
At the same time, challenges remain, especially when it comes to access, affordability, and speed.
That is why your stories matter so much, whether you are living with ALS or you are a caregiver or your family has been impacted by ALS.