Social media star who advocates for blind community set to get ‘life-changing’ gene therapy | CBC News

A young Pickering man who has amassed a big social media following for his advocacy for blind people is set to receive a sight-saving gene therapy — the first time the expensive procedure will be covered by OHIP.

Adam Brown was born with a degenerative eye disease called retinitis pigmentosa that significantly hinders his vision and could eventually leave him fully blind. But in a few days, he is set to undergo a one-time treatment that an expert says could prove “life changing.”

The upcoming procedure comes after months of Brown using his social media stardom to push the Ontario government to fund the operation.

“I never really saw myself as an advocate or an activist. But I’m really glad that I can be representative of the blind and visually impaired community,” the 19-year-old Brown told CBC Toronto. 

Some of his videos have racked up hundreds of thousands of views on TikTok and Instagram, where he has about 150,000 and 24,000 thousand followers, respectively. Brown said he felt compelled to speak up publicly because he’s one of only a few visually impaired influencers trying to bring more awareness to the issues the community faces.

The gene therapy Brown is set to receive is called Luxturna. Approved by Health Canada in 2020, Luxturna is the first effective treatment developed for Brown’s condition, Ontario’s Ministry of Health says. The medication is among the most expensive available today, priced at $450,000 US per eye — or more than $1 million CAN for both — if a patient pays out of pocket.

It is currently publicly-funded in Saskatchewan, Alberta and Quebec, but Brown’s procedure will likely be the first covered by Ontario’s provincial health insurance plan.

“It’s an honour,” he said.

20,000 Canadians have inherited retinal disease

In a statement, a spokesperson for Ontario Minister of Health Sylvia Jones said the province has earmarked $2.9 million for a gene therapy program targeting a group of conditions known collectively as inherited retinal diseases. Retinitis pigmentosa is among the most common of these often rare and debilitating disorders, according to the U.S. National Institute of Health.

“This critical public funding will cover the one-time treatment … It will also cover associated drug and patient treatment costs,” the statement said.

The recent development is a major breakthrough for those with retinal diseases, which in Brown’s case has already resulted in night blindness and significantly reduced peripheral vision. Brown’s sister, Jenna, also has the same condition.

Larissa Moniz, director of research and mission programs with the group Fighting Blindness Canada, says some Ontarians have already had the treatment — including some who went to the U.S.

Moniz said the results the gene therapy can provide are often “life-changing” for young people, and can include improved self confidence and more independence. 

There are some 20,000 Canadians living with an inherited retinal disease, according to Moniz. 

“I also hope that more funding becomes available for new treatments for other eye diseases, as they come on the market,” she said.

Brown hopes so too.

Last month, the second-year York University student was recognized for his advocacy when he was given the Madiba Award from the Durham Black History Committee.

Brown, also a pianist and black belt in Taekwondo, said celebrating social media influencers with vision loss is important for others in the community to see. 

“No matter how much it seems like the odds are stacked against you, you can’t let that stop you from achieving what you love, whatever it is,” said Brown. 

“You have to chase it with everything you have.”

For more stories about the experiences of Black Canadians — from anti-Black racism to success stories within the Black community — check out Being Black in Canada, a CBC project Black Canadians can be proud of. You can read more stories here.