Doctors and a teenage patient’s family are calling on Manitoba Health to cover the full cost of a potentially sight-saving surgery for a progressive disease that typically affects young people.
Ophthalmologists said non-invasive corneal collagen cross-linking (CXL) — covered by half of Canada’s provinces — can stop keratoconus from worsening, avoiding the need for more complex and costlier surgeries, such as a corneal transplant, in the future.
“It should really be a slam-dunk as far as coverage,” Dr. Jeremy Levi, a Winnipeg specialist who performs dozens of procedures each year, said. “It’s long overdue. It brings me no joy to know patients are paying out of pocket for what should be considered an essential surgery.”
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Wyatt Jones (left) is pictured with his sisters Avery and Peyton, and parents Melanie and Doug Jones. Earlier this year, Wyatt was diagnosed with keratoconus, which results in a loss of vision.
The disease causes the dome-shaped cornea to thin and bulge into a cone shape, causing blurred vision or light sensitivity.
It can lead to legal blindness in some people without timely corrective treatment, according to the Canadian Keratoconus Foundation, which estimates the disease occurs in about one in 1,000 people.
CXL uses vitamin drops and UV-A light to strengthen corneal tissue and prevent bulging. It costs up to $4,000 in Canada, said Dr. Gdih Gdih, a Winnipeg-based spokesman for the Canadian Ophthalmological Society.
The routine procedure is a “big financial hit” for some people, Levi said.
Ophthalmologists and Doctors Manitoba lobbied previous governments for complete coverage for those who meet eligibility criteria. Their efforts were rebuffed, Levi and Doctors Manitoba spokesman Keir Johnson said.
“The rationale provided was that Manitoba Health does not insure services that are experimental, part of a clinical research trial or emerging treatments for which the efficacy has not been established,” Johnson said.
It appears the province is now willing to listen. Manitoba Health no longer considers CXL to be experimental, a spokesperson said.
The department offers limited coverage of $350.32 for the procedure on one eye and $613.06 for both eyes, the spokesperson confirmed.
After inquiries by the Free Press, the government invited Doctors Manitoba, which represents physicians, to pursue negotiations that could lead to a new tariff specific to CXL.
Currently, doctors can bill for limited coverage using a by-report process. Levi said a billing code for CXL is needed, because the non-specific by-report process is an “administrative nightmare.”
Doug and Melanie Jones’ 15-year-old son, Wyatt, underwent CXL this week at a cost of about $1,500.
The Headingley couple started an online petition and wrote to Health Minister Uzoma Asagwara to call on the NDP government to fully cover CXL so there is “equal access.”
“We’re fortunate we’re able to pay for the procedure out of pocket,” Doug Jones. “We’re not looking for anything for ourselves. I would love for it to be something where families don’t have to have the stress of paying for something this important.”
The Joneses will also have to pay about $1,000 for special corrective contact lenses for Wyatt.
“It’s long overdue. It brings me no joy to know patients are paying out of pocket for what should be considered an essential surgery.”–Dr. Jeremy Levi
Some patients undergo laser eye surgery at the same time as CXL to improve their vision. The Joneses were told the combined cost would be about $5,000, if their son was eligible for laser eye surgery.
Wyatt was diagnosed with keratoconus after his vision became so blurry he had trouble seeing scoreboards while playing hockey.
“It was really scary when we first heard,” Doug Jones said. “The reality hit us all when we started reading about it. The anxiety we had from it was difficult.”
It’s not yet known what causes the disease. Eyeglasses, lenses or corneal inserts are among the treatment options, depending on the stage of the disease.
The Manitoba Association of Optometrists supports calls to provide full coverage to those who are candidates for CXL, spokeswoman and Winnipeg optometrist Dr. Nadine Shelton said.
Five provinces — British Columbia, Newfoundland and Labrador, Nova Scotia, Ontario and Prince Edward Island — cover CXL through provincial health-insurance plans, said Gdih.
He said ophthalmologists always wonder why the procedure is not covered elsewhere in Canada.
“This type of treatment, which normally costs, roughly, between $2,000 to $4,000, is very essential in some cases, and very important to prevent permanent visual loss,” Gdih, a glaucoma and anterior segment surgeon, said.
“It is not like a cosmetic procedure. This is like any other essential surgery needed, except that it is not as common as glaucoma or retinal detachment surgeries, which are covered for all patients.”
B.C. provides coverage in specific circumstances. Patients over the age of 25 must demonstrate progression of keratoconus, while those younger do not, said Dr. Evelyn Lo, president of BC Doctors of Optometry.
chris.kitching@freepress.mb.ca
Chris Kitching
Reporter
Chris Kitching is a general assignment reporter at the Free Press. He began his newspaper career in 2001, with stops in Winnipeg, Toronto and London, England, along the way. After returning to Winnipeg, he joined the Free Press in 2021, and now covers a little bit of everything for the newspaper. Read more about Chris.
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