Clarenville man with rare eye disease wants N.L. to pay for treatment

A Clarenville man is asking the province to pay for surgery to keephim from losing his vision to a rare eye disease.

Wyatt Ellis says he needscornea cross-linking surgery butNewfoundland and Labrador's Medical Care Plan doesn't pay for it.

"I feel like our health-care system has failed us," he said. "I hope changes are made to cover this surgery or it will be coming out of my own pocket, which is very unfair, I think, for something that's a necessity. You know, your eyes are a necessity in life."

How long will it be until I lose my sight?- Wyatt Ellis

Ellis, 21, went to an eye doctor almost two years ago when his vision began to get "fuzzy," he said. He was diagnosed with keratoconus, a disease that results in progressive damage to the cornea,the outer clear, round structure that covers the eye'siris andpupil.

Ellis says his vision has deteriorated since he was first saw a doctor about it.

"More so in my right eye but my left is starting to progress as well," he said. "From that day I was diagnosed it was, you know, how long will it be until I lose my sight?"

Ellis, who has launched a GoFundMe campaign to help pay for the surgery, is in school learning to be a millwright, and said the disease is affecting his work.

"It's really hard doing some tasks like welding. It's very hard to see my welds. It's very stressful," he said.

He'salso the father of a one-year-old child.

"It's really going to affectme and my family especially my newborn son and doing the things with him that he might love, like hockey or other sports. I want to be there and do those things with him."

Eliis says his doctor, opthalmologist Chris Jackman, told him the solution is a surgical treatment called cross-linking, a procedure that uses ultraviolet light and eye drops to strengthen the collagen fibres in the cornea.

'He struggles a lot'

Nina Gagliano, Ellis'spartner and the mother of their child, says it's difficult to watch Ellis's vision deteriorating.

"He struggles a lot with it and I find that sometimes he gets really down because any normal activity that a person with good eyesight can do, he can't, and it frustrates him. I want him to be able to play with his son and see him grow," she said.

Provincial response

Health Minister John Haggiesays the province insures new services when there's good reason to do so.

"We have a process with the Newfoundland and Labrador Medical Association about adopting new technologies and new fee codes and there is and evidence-based process and we haven't had a request from them yet," he said.

"So we'll keep an eye on it and certainly if the evidence is there, I'm sympathetic to a request from the NLMA."

Haggie says another treatment for keratoconuscornea transplants iscovered by MCP.

Not covered in Atlantic Canada

Newfoundland and Labrador is not the onlyAtlantic Canadian province where cross-linking surgery isn't covered.

"None of the Atlantic provinces currently cover cross-linking," says Dr. Kenneth Roberts, former chair of the Atlantic Canadian Ophthalmology Society, in a written statement sent to CBC.

Cross-linking should be covered as a medically essential service.- Kenneth Roberts

Roberts says cross-linking surgery should be covered by provincial plans likeMCP.

"Keratoconus is a blinding eye condition, and cross-linking should be covered as a medically essential service," he said.

Cornealtransplantshavelimitations, said Roberts. He said they're the treatment of choice for end-stage keratoconus.

"Generally today people are picked up in the very early stages of keratoconus when cross-linking is most effective," he wrote."Corneal transplants are a major eye surgery that has a very long recovery time (twoyears). And corneal transplants generally last only 10 years. Since keratoconus affects young people, their transplant will likely need to be redone every 10 years."

He said cross-linking can cost more than $4,000 for both eyes but it's hard to determine the cost of cornea transplants because they're covered by public health insurance in Canada. In the U.S., he said,a corneal transplant costs between$13,000 and $28,000 US.

Roberts suggested cross-linking is a better option for young patients with keratoconus.

"Having cross-linking done at the right time can stop the progression of keratoconus and the patient will never require a transplant. The healing time for cross-linkingis significantly shorter, approximately fourweeks or less," said Roberts.

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