'Best day of my life': Saskatoon boy to receive $1M eye therapy that could help save sight

For the past year, a Saskatoon mother has been advocating for her 7-year-old son to receive treatment that will help him be able to see better.

Jaymie Eckert’s son Anthonee was diagnosed with a rare inherited blinding eye disease called Leber congenital amaurosis (LCA) in September 2021.

The disease is progressive and gets worse with time, making access to treatment for Anthonee even more crucial.

“I definitely noticed his vision has been declining in the last little while here, especially with his night vision,” Eckert told CTV News.

When Eckert found out about Luxtura, the first targeted gene therapy for LCA to be approved by Health Canada, she knew helping her son’s vision get better was a possibility. However, the treatment has a hefty price tag, costing up to a million dollars.

“I don’t have a million dollars, our family put together doesn’t even have a million dollars,” Ecket said.

Eckert reached out to the province and even the prime minister in order to push for treatment coverage for Anthonee. After over a year of reaching out to the province, the Government of Saskatchewan has not provided coverage for Luxturna until now.

Eckert says she found out on Dec. 23, 2022, that Anthonee would be approved for coverage to receive the gene therapy.

“I’ll never forget that day because it was the best day of my life, to be honest. I worked really hard to get to that point,” Eckert said.

Eckert says she was “over the moon” because it’s going to improve Anthonee’s quality of life for the next seven years and the wait for approval felt like a “century.” Eckert says her son is the first patient in the province to receive this treatment.

“We are definitely setting the precedent for other children and other patients in the province so that the process won’t be as long and as hard as it was for us,” she said.

The Ministry of Health issued a statement to CTV News that said they can’t comment on specific individual’s coverage due to privacy laws.

“Drug funding decisions for the Saskatchewan Formulary are made through a process that involves the national Common Drug Review (CDR) through the Canadian Agency for Drugs and Technologies in Health (CADTH), the provincial drug review process, as well as negotiations via the pan-Canadian Pharmaceutical Alliance (pCPA). The outcome of these negotiations will inform the consideration of coverage decisions for Luxturna in Saskatchewan.”

They also said that patients interested in Luxturna coverage can contact the Ministry about their eligibility for coverage.

ADVOCATING FOR WIDER COVERAGE  

Fighting Blindness Canada says there are up to 40 people across the country who are in need of the Luxturna treatment and only a couple of provinces offer full coverage.

The organization has been fighting for access to coverage for years, even before it was approved by Health Canada in 2020.

Due to the time-sensitivity of LCA, Fighting Blindness Canada says the success of the treatment is based on how many healthy cells are left in a person's eye.

“If Anthonee’s already lost some vision, he won’t be able to restore all that vision, which is why it is so important to get the treatment as soon as possible,” said Larissa Moniz, director of research and mission program at Fighting Blindness Canada.

The high cost of Luxturna is due to a number of factors. Moniz says it’s usually a one-time treatment that’s an injection and it’s the first gene therapy for an inherited retinal disease.

“It may get cheaper as more treatments come on the market but at this point, there’s been a lot of research, a lot of development that goes into creating such an innovative treatment,” Moniz told CTV News.

Eckert says each of Anthonee’s eyes can only be treated once in a lifetime and the treatment only lasts about seven years.

“In seven years I really don’t know what path he will go down. If there’s going to be new studies done for LCA or we have to come up with the money on our own, it’s so hard to say,” she said.

Eckert says while a treatment date hasn’t been scheduled yet, Anthonee will likely be able to get it before the spring.