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Dec 4, 2020

Gene therapy Luxturna recommended for public health care coverage

Another hurdle in the process to bring the gene therapy Luxturna to Canadians has been cleared!

In the last few weeks, the Canadian Agency for Drugs and Technologies in Health (CADTH) and Institut national d’excellence en santé et services sociaux (INESSS) recommended that the cost of Luxturna should be covered by provincial public health care. Luxturna is a gene therapy treatment for individuals with inherited retinal diseases retinitis pigmentosa or Leber congenital amaurosis caused by mutations in the RPE65 gene. It is a one-time treatment that can slow the progression of vision loss and may also restore some vision, specifically night vision.

Thank you to all who completed our survey on living with an inherited retinal disease earlier this year. The experiences and information shared in the surveys helped strengthen our voice when explaining to CADTH and INESSS the need for innovative treatments, like Luxturna being made available in Canada. You helped make this happen.

Following these important recommendations, each province will now negotiate the cost of Luxturna with the pharmaceutical company and make a decision on if the provinces health care plan will pay for the treatment.

Getting a new drug or treatment approved and publicly funded in Canada can be a long process, taking up to 2 years or longer! There are four questions that need to be answered before a new treatment is available to Canadians:

  1. Is a drug safe and effective? Health Canada looks at evidence, including evidence from clinical trials, to ensure that new treatments are safe and do what they say they will do. A Health Canada approval means that a new treatment can be sold or delivered in Canada. Health Canada approved Luxturna in October 2020.
  2. Is a treatment cost-effective? CADTH and INESSS analyze data and make recommendations on if a new treatment should be covered by public health care. CADTH makes the recommendation for all provinces except Quebec, where instead INESSS is responsible. CADTH and INESSS take into account how well a treatment works, how it compares to other available treatments, and what the patient experience is with the disease in order to make a recommendation. CADTH and INESSS have recommended that Luxturna should be covered by public health care.
  3. Is it a good price? The provincial governments have a pan-Canadian team that will negotiate a price with the pharmaceutical company. The negotiation can take several months This negotiation process will begin soon for Luxturna.
  4. Is the new treatment going to be covered by public health care? In the final step, each province has to decide if they will pay for the new treatment based on the price negotiated by the pan-Canadian team. If each province comes to an agreement with the pharmaceutical company, the new treatment will be put on the provincial formulary, meaning it is covered by provincial health care. Once Luxturna is covered by the provinces and starts to be delivered, a government agency called the Patented Medicine Prices Review Board (PMPRB) will continue to monitor the cost of treatment to make sure the price isn’t “excessive.”

While we know that each step is important to ensure the safety of Canadians and that the treatment is good value, we also want to ensure Canadians have access to life-changing new treatments (like Luxturna) as soon as possible.

Fighting Blindness Canada thinks it is critical that Luxturna is publicly funded not only to benefit individuals who receive the treatment but also to set a precedent for future treatments. Public funding encourages researchers and industry to keep investing into innovative research to deliver more treatment options to people living with blinding eye diseases.

In the coming months Fighting Blindness Canada will be taking this message to decision makers. We look forward to sharing more about these efforts and how you can help!

If you have any questions about Luxturna or the drug-approval process please contact our Health Information Line at or 1.888.626.2995

To learn more about gene therapy, how it works and can treat vision loss, visit our gene therapy resource page.

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