For the first time, there’s an approved treatment for people living with SOD1-ALS. Now, we need to ensure everyone who may benefit can access it through public reimbursement, regardless of where they live.

For about 2% of people living with ALS, the disease is caused by a change in the SOD1 gene. It often runs in families, passed down through generations, but it can also appear in people with no known family history. Qalsody (tofersen) is the first therapy made to target this genetic cause of ALS.

Clinical evidence shows that it can meaningfully slow the disease, and for some, stabilize it, offering something the ALS community has rarely seen: more time with the people they love.

Qalsody has already been approved by Health Canada, and Canada’s Drug Agency (CDA) has recommended that it be publicly reimbursed. Before that can happen, pricing negotiations must be completed, followed by funding decisions in each province and territory.

That’s why the ALS community needs your help. Join us in calling on provincial governments to reimburse Qalsody through their drug programs as soon as pricing negotiations end. No one should be left waiting.

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Time Matters in ALS

0
days since Health Canada's approval

Qalsody is approved by Health Canada

Canada’s Drug Agency has recommended reimbursement

Public funding decisions are still pending

People living with SOD1-ALS are waiting

On March 3, 2025, Health Canada approved Qalsody (tofersen). It was a hopeful moment for the ALS community. But approval is only one step on the path to access, and the days continue to pass.

While pricing negotiations continue, people living with SOD1-ALS and their families are left waiting for a final decision on public reimbursement. They are waiting for the assurance that this treatment will be available through their public drug plan. They are also waiting for a system that can deliver timely access to future ALS therapies.

For people living with ALS, time is precious. Every month of delay matters. That’s why we’re calling on the provinces and territories to act quickly to champion equitable access to approved ALS treatments.

For Families Affected by SOD1-ALS, This is Personal

For most families, SOD1-ALS is passed down through generations. People who carry the gene often grow up knowing the disease intimately – having watched a parent or grandparent live with it, knowing they may one day face the same diagnosis themselves.

Qalsody marks a turning point: a shift from watching generations face the same diagnosis, to a targeted therapy that can change its course.

While Qalsody represents significant hope for the ALS community, it will only be able to change Canadian patients’ lives if they all have fair and equitable access through public reimbursement.

Paula Trefiak

For families like mine, access to Qalsody is urgent. This drug is the only thing standing between us and the rapid progression of SOD1-ALS. It has already stopped the disease for me and my sibling, and my children may need it soon. Without public funding, the cost is simply impossible for any family to shoulder, especially as ALS takes away our ability to work. We need provinces to act now so no one loses access to the treatment that is keeping us alive.

Paula Trefiak Regina, SK

Instead of dying from ALS, with Qalsody I actually get to live with ALS. I am able to spend time with my family and friends, watch my kids grow up, golf during the summer and still able to do things. Without Qalsody that wouldn’t be the case.

Todd Bertamini Acme, AB
Todd Bertamini
Kelsie Snow

When my husband, Chris, was diagnosed with ALS we knew what was coming for us. Chris' dad and two uncles had all died within 9 months of diagnosis; his 28-year-old cousin in 18 months. One of the first things I did after diagnosis was buy more iCloud storage, because I thought that our daughter, who was just 4 years old at the time, wouldn't have memories of her dad, that I would have to capture them for her. Qalsody changed that. Because of Qalsody my husband lived almost 5 years. Because of Qalsody my daughter remembers her dad. Qalsody gave us what every ALS family longs for — the gift of more time.

Kelsie Snow Calgary, AB

Qalsody is a life altering drug, it takes what was once a death sentence and allows me to live a full life. Since starting the drug I have had symptoms improve. I am still able to do almost everything I enjoyed before being diagnosed, including continuing to be able to work full time on the farm and remain a part of my local volunteer fire department.

Tre Archibald Strongfield, SK
Tre Archibald

Share Your Story

If you or someone you love has been affected by SOD1-ALS, we want to hear from you. Your experience can help decision-makers understand what’s truly at stake.

If you are interested in sharing your story as part of this campaign, please reach out to us at advocacy@als.ca.

Where Things Stand

In Canada, accessing a new treatment through public drug plans involves several steps. Here’s where Qalsody is today:

Health Canada approval

In March 2025, Health Canada approved Qalsody under a Notice of Compliance with Conditions (NOC/c). Learn more

Canada's Drug Agency (CDA) recommendation

In December 2025, CDA recommended that Qalsody be publicly reimbursed, with conditions. Learn more

pan-Canadian Pharmaceutical Alliance (pCPA) pricing negotiations

In March 2026, negotiations between provincial governments and the manufacturer began and are currently underway to agree on pricing.

Provincial and territorial reimbursement decisions

Once negotiations conclude, each province and territory decides whether to add Qalsody to its public drug plan.

The Goal

Equitable access for people living with SOD1-ALS in Canada

More information

Frequently Asked Questions – Qalsody (tofersen) Driving Discovery: Canada's role in the journey to Qalsody's approval ALS Canada submits patient input submission for Canada's Drug Agency's review of Qalsody (tofersen) ALS Canada Gene Hub
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