We would like to inform you of an important update regarding access to SKYCLARYS™ (omaveloxolone), the first and only treatment approved in Canada for Friedreich’s ataxia (FA).

Negotiations between Biogen Canada and the Pan-Canadian Pharmaceutical Alliance (APP/pCPA) regarding SKYCLARYS have concluded without an agreement. This situation is causing a significant delay in access to reimbursement through public drug plans in Canada.

This news is all the more difficult for our community as it comes just a few days after a significant breakthrough in Quebec: INESSS recognized the therapeutic value of SKYCLARYS and took an important step toward potential access for patients.

The contrast is striking. On one hand, there is clear recognition of the treatment’s value and the unmet need; on the other, a deadlock in negotiations that is effectively delaying access for patients across the country.

In the context of a rare, progressive disease that shortens life expectancy—such as Friedreich’s ataxia—rapid access to treatment is essential.

Although this situation is deeply disappointing, we remain committed to the cause. Discussions and collaborations with the various stakeholders will continue to ensure that patients and their families are not left without a reimbursed treatment option.

This situation highlights a broader issue in Canada: even when the value of a treatment is recognized, actual access for patients can remain uncertain and delayed.

Ataxia Canada is actively working to amplify the voices of people living with FA by documenting their reality and the value of treatments through data and personal stories.

???? Read Biogen Canada’s press release

???? Join our call to action for rapid access to SKYCLARYS

We strongly encourage members of our community to continue taking action:

• Share their experiences and realities
• Participate in awareness and advocacy initiatives
• Support efforts to accelerate access to treatments

Additionally, for children and adolescents with Friedreich’s ataxia, clinical trials are underway in Quebec to evaluate omaveloxolone. Financial support may be available for participants from outside the province.

If you would like more information or to be put in touch with the research teams, please reply to this message. We’ll be happy to assist you.

Our Commitment

Ataxia Canada remains fully committed to:

• Advocating for timely, equitable, and sustainable access to treatments;
• Collaborating with all stakeholders to advance solutions;
• Giving patients a voice in decisions that affect them.

We will continue to keep you informed of developments.

We’re here to support you!

Please don’t hesitate to contact us if you need help with:

• Navigating access to treatments (private insurance or support programs);
• Obtaining funding for assistive devices or adaptive equipment;
• Finding a specialist or clinical team;
• Participating in a clinical trial or research project;
• Accessing other resources and support services.