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Dec 3, 2021

BREAKING NEWS … Canadians one step closer to Luxturna Gene Therapy Access

Fighting Blindness Canada is excited to announce that Canadians are one step closer to being able to access voretigene neparvovec (Luxturna), the first gene therapy for an inherited retinal disease.

As of November 25th, Canada’s provincial governments have launched a price negotiation with Novartis, the company that sells Luxturna in Canada. This was a long time coming. Luxturna was approved by Health Canada, CADTH and INESSS over a year ago. Since then, the community has been urging for the next step in the drug approval process to happen. And now it has. This is a major milestone and a reason to celebrate.

However, there is more to do! While Canadians, like Nora, wait for the price to be negotiated and for provinces to agree to pay for Luxturna, they are losing vision (Learn more about Nora’s story). For some, by the time the process is complete, it might be too late to receive treatment. That is why Fighting Blindness Canada has urged an expedited negotiation because TIME = SIGHT.

It is unacceptable that Canadians are falling behind while, Luxturna is being delivered and paid for in 19 countries, including the UK, Germany, Australia and even Croatia. Fighting Blindness Canada along with our vision partners and the vision loss community will continue to advocate for access to Luxturna and the other innovative treatments that are coming to market for inherited retinal diseases, AMD, glaucoma, cataracts, and diabetes-related vision complications.

Research is delivering treatments that can transform lives. Canadians need access to them.

Let’s keep the pressure on! Lend your voice and send the new email to your Premier and Health Minister to thank them for taking this step and encourage them to keep the process moving forward. Send an email at


Luxturna is a treatment for people who have Leber congenital amaurosis (LCA) or retinitis pigmentosa (RP) caused by mutations in both copies of the RPE65 gene. Luxturna is a gene replacement therapy, providing a working copy of the RPE65 gene to replace the mutated version. Evidence from clinical trials shows that this treatment can safely improve vision, particularly night vision.

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