Luxturna, a gene therapy that can save your sight, can cost more than $1 million out of pocket
A young man from Pickering who has gotten a lot of attention on social media for his work to help blind people will get sight-saving gene therapy. This is the first time that OHIP will pay for this expensive procedure.
Adam Brown was born with retinitis pigmentosa, a degenerative eye disease that makes it hard for him to see and could eventually make him totally blind. But in a few days, he will get a one-time treatment that could “change his life,” according to an expert.
Brown has been using his popularity on social media for months to get the Ontario government to pay for the surgery.
“I never really thought of myself as a supporter or a fighter. But I’m really glad that I can speak for people who are blind or have trouble seeing,” “Brown, who is 19 years old, told CBC Toronto this.
Some of his videos on TikTok and Instagram, where he has between 150,000 and 24,000 followers, have been watched hundreds of thousands of times. Brown said he felt compelled to speak out because he is one of only a few influential people who are blind and are trying to bring more attention to the problems the community faces.
Luxturna is the name of the gene therapy that Brown will get. The Ontario Ministry of Health says Luxturna is the first effective treatment for Brown’s condition. It will be approved by Health Canada in 2020. If a patient pays out of pocket, the drug costs $450,000 US per eye or more than $1 million CAD for both. This makes it one of the most expensive medicines on the market.
It is currently paid for by the government in Saskatchewan, Alberta, and Quebec, but Brown’s procedure is likely to be the first to be covered by Ontario’s provincial health insurance plan.
“It’s an honour,” he said.
Retinal disease runs in the families of 20,000 Canadians
A spokesperson for Ontario Minister of Health Sylvia Jones said in a statement that the province has set aside $2.9 million for a gene therapy program that will treat inherited retinal diseases. According to the U.S. National Institute of Health, retinitis pigmentosa is one of the most common of these often rare and debilitating diseases.
“This important public money will pay for a one-time treatment… It will also pay for the costs of drugs and patient care,” as was said.
The new discovery is a big step forward for people with retinal diseases. Brown’s disease has already made him legally blind and severely limited his peripheral vision. Jenna, Brown’s sister, also has the same problem.
Fighting BlindnessCanada’s director of research and mission programs, Larissa Moniz, says that some Ontarians have already had the treatment, some of whom went to the U.S.
Moniz said that the results of gene therapy are often “life-changing” for young people. These results can include more self-confidence and being able to do things on your own.
Moniz says that about 20,000 Canadians have a disease of the retina that is passed down from their parents.
“I also hope that new treatments for other eye diseases get more funding as they come on the market,” she said.
Brown hopes so too.
The Durham Black History Committee gave the second-year York University student the Madiba Award for his advocacy work last month.
Brown, who is also a pianist and has a black belt in Taekwondo, said that it is important for the community to recognize social media influencers who are blind.
Brown said, “Even if it seems like the odds are against you, you can’t let that stop you from doing what you love, no matter what it is.”
“You have to do everything you can to get it.”
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