'5 years ago, there was no hope.' Now, an artist uses TikTok to raise awareness of a 'life-changing' vision treatment

CTV National News: New surgery restoring sight Heather Butts hears from a young Ontario man who's using TikTok to raise awareness of a rare eye condition and new treatment available.

PICKERING, ONT. — A young Ontario man who used his creative talents and the power of social media to advocate for the blind community is now recovering after being among the first in his province to receive a rare and expensive gene therapy to help his vision loss.

Adam Brown was born with retinitis pigmentosa, a degenerative eye disease that significantly impacts his vision. He has difficulty seeing at night time, reading small print and his peripheral vision is affected. The condition gets worse over time and for some people it often leads to blindness.

“It makes it difficult to do things like play sports, read or play video games – things that you wouldn’t think would be difficult can be very difficult for me,” Brown told CTV National News.

But the disease hasn’t stopped the artistic 19-year-old, who studies music at York University. The talented pianist is also a voice actor and found social media as a creative outlet to help build awareness for the blind community, his condition and possible solutions.

“The blind and visually impaired community is not small but its super quiet and super overlooked” says Brown. “I feel there is a general lack of awareness of what having a visual impairment actually does and how it impacts people’s lives.”

Brown has used TikTok videos to showcase his condition, while highlighting a gene therapy called Luxturna, something he’s been advocating for for years.

Approved by Health Canada in 2020, Luxturna is a gene therapy treatment that slows and may even restore some vision loss due to retinitis pigmentosa or Leber congenital amaurosis, caused by mutations in the RPE65 gene.

“Having an innovative treatment like this come to market, it’s life changing for those who get it,” said Larissa Moniz, director of research at Fighting Blindness Canada.

While the therapy was approved by Health Canada in 2020, only in recent months have provinces made it available. The procedure, along with medication and recovery, can cost a patient $1 million for both eyes, if they pay out of pocket.

Brown was among the first in Ontario to have the procedure done under the province’s health insurance plan. He’s still in recovery but already noticing a difference.

“My night vision has gotten a lot better which is a really, really big thing,” said Brown. “The peripheral vision has gotten a lot more clear, I’m a lot more aware of my surroundings.”

Advocacy runs in his family. Brown’s sister, Jenna, also has retinitis pigmentosa, and was part of the clinical trial in the U.S. more than 10 years ago.

“I remember immediately seeing results in that treated eye,” she said. “I compare it to turning up the brightness on your phone.”

Now, at age 23, she was able to have the procedure on her second eye in Ontario.

“We’re seeing, I guess, the fruits of my labour and all the doctors’ labour… we’re finally seeing it through, it’s really amazing,” said Jenna.

Grateful for the opportunity to have the treatment, she’s also proud of her younger brother for raising awareness and giving voice to an important cause, sharing their stories with his tens of thousands of followers.

While roughly 50 Canadians who have the particular gene mutation are eligible for Luxturna, there are 20,000 Canadians living with an inherited retinal disease.

“There are dozens and dozens of clinical trials right now which are looking at trying to find treatment for different types of eye diseases,” said Moniz of Fighting Blindness Canada, adding “five years ago there was no hope, so I think this is such an exciting moment for the vision loss community.”