The parents of a 13-year-old boy were forced to pay thousands of dollars for eye surgery or wait until their son was legally blind before the public health-care system would help him.

CBC News investigates ​

"It doesn't make sense. Why would you knowingly let someone suffer like that?" the boy's mother, Krystal Tanner, told Go Public from her home in Rockland, just outside Ottawa.

Her son, Balin Vergunst, suffers from the progressive eye disease keratoconus. It causes the normally round cornea to thin and bulge into a cone-like shape leading to serious vision problems. As his condition worsened, Vergunst had to give up sports and struggled in school.

Balin Vergunst's cornea became conical because of keratoconus, a disease that affects one in 1,000 Canadians. (Krystal Tanner)

"It was hard to play hockey because I couldn't see the puck, and it's hard to chase after something that isn't there," he said.

"For school, it was hard to try and see the writing on the board or just to see some text on paper. I would just see multiple [things] or it would just be blurry."

Pay or let son go blind

Vergunst's parents took him to see several specialists, including a pediatric ophthalmologist who recommended early intervention and a minimally invasive procedure called corneal collagen cross-linking or CXL, which could be done right away.

CXL is not new. The procedure has been performed in Canada for many years with excellent results according to ophthalmologists.

Krystal Tanner had to choose whether to let her son go blind before OHIP would pay for eye surgery, or go into debt. (CBC)

But there was a catch. Vergunst's parents would have to pay $3,000 because CXL isn't covered by OHIP, Ontario's health-care system. The alternative was waiting until the boy was legally blind and eligible for more complicated surgery — a corneal transplant, which is covered by the province.

The parents borrowed money from family members to pay for the procedure.

"We finally said it's quality of life. We decided we can't let him go through his education with his eyesight deteriorating knowing that there is a possible solution for this," Tanner said.

Vergunst had the operation in late January at the Ottawa Eye Institute at Ottawa General Hospital.

Issue 'more political than health'

According to Dr. Allan Slomovic, president of the Canadian Ophthalmological Society and research director of the cornea unit at the University Health Network in Toronto, there is more than a dozen years worth of data that shows corneal collagen cross-linking is safe and effective. He said it's not only the best thing for patients, but also less expensive for the system.

"Ideally, you want to get this condition early so that you can stop it in its tracks and stop it from becoming an advanced disease and that technology is available to us ... By doing that you can prevent people from going on to have major corneal surgery," Slomovic told Go Public.

He said when it comes to deciding which procedures will be covered, politics play a role.

Top Canadian opthalmologist Dr. Allan Slomovic says sight-saving surgery should be accessible to everyone. (CBC)

"It's more political than health [related]. Children should have access to effective treatment that might help prevent them going down this road requiring corneal transplantation," Slomovic said.

The Ontario government seems to support the procedure even if it doesn't pay for it.

It provided the Toronto clinic Slomovic operates from with $225,000 for a three-year pilot project that launched in 2012 and ended last March.

This year, the province provided the same clinic with an additional $1 million for more surgeries but only at that one location and only to patients who meet pilot project criteria — making it impossible for patients like Balin Vergunst living in other areas of the province to take part.

The Toronto clinic is hoping use the money to make the surgery available in Ottawa and Kingston as well, but is waiting for the province to approve the plan.

Province needs more time, spokesperson

In 2011, Ontario formed advisory committee that determined more study was needed.

Despite corneal collagen cross-linking's long-term success, a spokesman from Ontario's Ministry of Health and Long Term Care told Go Public the province needs more time in order to judge how effective the treatment is and when, how and if it should be available.

"All Ontario patients are served best by a health system that considers evidence before introducing new technologies, delivery methods and treatment pathways as medical science advances," David Jensen wrote in an email to Go Public.

We also asked the provincial government if patients now paying out of their own pockets would be reimbursed, but did not receive an answer.

Coverage depends on location

Our investigation looked at other parts of the country and found depending on where they live, those requiring CXL could face the same problem.

While the rules slightly differ from province to province, more than half of provincial health-care plans do cover the procedure.

Though the procedure has proven effective for over a decade, some provinces still refuse to pay for corneal collagen cross-linking. (CBC)

According to the Canadian Keratoconus Foundation, one in 1,000 Canadians suffers from the disease.

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