Jun 5, 2022

Wait Continues for Sight-Saving Gene Therapy

Despite being approved by Health Canada in October 2020, more than 40 families across the country continue to wait for a decision on public funding of Luxturna, a sight-saving gene therapy. Luxturna is for individuals with Leber congenital amaurosis (LCA) or retinitis pigmentosa caused by mutations in the RPE65 gene. Two of those families are now sharing their stories with the hopes of saving their children’s remaining vision.

Anthonee is an active six-year-old boy living in Saskatoon who loves playing sports and dreams of becoming a teacher or a police officer, but many of these dreams will be difficult to achieve unless he receives Luxturna. Anthonee’s mom Jaymie recently shared their family’s journey on CTV News Saskatoon.

Meanwhile, William is a 10-year-old boy from Montreal who loves life, cars, cycling and karate. With a keen understanding of how the eye functions and a witty sense of humour, William is poised to take on the world but his parents, Khaled and Joy, are frustrated with how long it is taking to get him treatment and want answers. Check out his incredible story recently profiled by CBC news (en Français).

The Pan-Canadian Pharmaceutical Alliance (p-CPA) launched negotiations between Canada’s provincial governments and Luxturna’s manufacturer on November 25, 2021. A decision was expected within four months. Every day governments delay, the more sight Anthonee and William lose needlessly – as many as 10,000 photoreceptors per day.

You can do your part by visiting and adding your name to a letter sent to your Premier and your Health Minister.

There is no time to waste: we need to expedite negotiating access to Luxturna as soon as possible.

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