Quebec advocates want government to cover treatment for boy with vision loss

Members of a Laval, Que., family and the medical experts they deal with say they are at their wit’s end.

William Khayrallah, 11, has a rare disease that causes progressive vision loss, but a new treatment for the disease is not yet funded by the Quebec government.

“He’s already close to legal blindness,” said Dr. Robert Koenekoop of the Montreal Children’s Hospital, which is monitoring him. “At night he is completely blind.”

William inherited retinal degeneration, a rare disease caused by a genetic defect affecting the photosensitive cells of the retina.

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“Called the photoreceptors,” Koenekoop explained, “which help us capture vision and interpret vision. They die very slowly.

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He says William could lose his vision completely within a decade.

Although the 11-year-old is now able to participate in some sports in well-lit areas, he would not do well in dimly lit and unfamiliar indoor spaces.

“I should ask for help, or I try on my own and I hit something like a lamp or a chair,” he told Global News from his home in Chomedy, Laval.

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National healthcare strategy to combat blindness and vision loss

National healthcare strategy to combat blindness and vision loss – April 25, 2019

It gets more serious.

Some time ago he hit someone while riding his bike outside at dusk. No one was hurt, he said, but it was a red flag.

“Yeah, it was like, ‘Whoa! I can’t see very well, I better be careful,'” he recalled.

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The situation has shaken his self-confidence and he fears that he will completely lose his sight.

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There is hope and frustration.

A new million-dollar gene therapy treatment that could stop his blindness and even improve his eyesight was approved by Health Canada in 2020. But it’s not covered by the Quebec government or any other province. .

According to Fighting Blindness Canada, the family’s advocacy group, they have contacted the Quebec government on several occasions to fund this procedure.

“They note that it’s being negotiated,” said Doug Earle, the group’s president and chief executive. “He’s been in negotiations for over 21 months.”

He says it’s not fair that those lucky enough to be covered by private insurance have the treatment paid for, but that 12 families in Quebec and other families across the country without that access are left behind. account.

“Three Canadians got it at SickKids (hospital) because their families were on benefits, so it’s really a two-tier health care system that’s growing,” he said.

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“Time equals sight,” he stressed. “The longer it takes, the less photoreceptors are left, and you need photoreceptors for this treatment to work.”

He added that the government has done compassionate coverage in the past and thinks doing the same for William and the other families could be an option.

“They sent a young boy to Florida for this treatment in 2019,” he told Global News. “So we were hoping that Quebec would be a leader on that front.”

Global News has asked Quebec’s health ministry for comment, but had no response at the time of publication.

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