Ottawa woman facing blindness pleads with province to cover sight-saving procedure

An Ottawa woman who has devoted her career to helping others improve their vision has discovered she needs a costly eye procedure — and risks going blind without it.

Optometric assistant Michelle Boich, 33, recently diagnosed with keratoconus

Michelle Boich is petitioning the Ontario government to make CXL, a procedure that could save her sight, insurable under OHIP. (Ashley Burke/CBC )

An Ottawa woman who has devoted her career to helping others improve their vision has discovered she needs a costly eye procedure — and risks going blind without it.

Michelle Boich, 33, is a certified optometric assistant. She recently found out she has keratoconus, a degenerative eye disease which causes the cornea — the clear, front part of the eye — to thin and change shape.

I shouldn't have to fight for my vision. Everyone should get the same chance.- Michelle Boich

If left untreated, Boich could slowly lose her sight. Once that happens, the province will pay for corneal transplant surgery. 

There is a procedure that could prevent Boich's condition from worsening, but corneal collagen cross linking, or CXL, isn't covered under Ontario's health insurance plan (OHIP), and can cost thousands of dollars.

Six other provinces and territories, including Quebec, pay for the procedure.

"It's so frustrating knowing that if I moved 20 minutes across the bridge into Quebec it would be covered," a tearful Boich said. "It makes me feel very upset and sad and angry. I shouldn't have to fight for my vision. Everybody should get the same chance." 

'It's so debilitating to lose your sight'

4 years ago
'It's so debilitating to lose your sight' 0:42

Pilot project

The Ontario government has spent millions of dollars studying whether it should cover CXL under OHIP, but has yet to make a decision.

Under a pilot project that began in Toronto in December 2012 and ended in March 2015, Ontario funded hundreds of CXL surgeries. Even after the project ended, the government continued to spend about $800,000 per year to treat eligible patients in several cities —  Toronto, Ottawa, Kingston, London and Sudbury. 

However, there are strict requirements to qualify for the paid procedure, and Boich has been told that because she had amblyopia as a child — commonly called lazy eye — she's unlikely to get into the program at the Ottawa Hospital Eye Institute.

An ophthalmologist has told Boich her left eye is too far gone for CXL, but the procedure could stop the progression of the disease in her right eye. She's been told the procedure at a private clinic will cost $3,000.
Boich suffered serious vision problems as a child, but managed to overcome them. (Supplied)

'Put yourself in my shoes'

That's money Boich doesn't have, but she said she's willing to go into debt to save her right eye.

"Put yourself in my shoes," said Boich, who has two daughters as well as two step-children. "If you could never see your family again — your spouse, your kids, the people that are important to you — how would you feel, that the government doesn't see the importance to cover this surgery?"

Boich has always struggled with her eyesight. She was nearly blind in one eye as a child and wore a patch under her big, red glasses. Through a lot of hard work she gained strength in her weak eye and eventually gained 20/30 vision. 

She said it was that childhood experience that made her want to help others improve their eyesight.

It was Boich's optometrist, and boss, who discovered her keratoconus during a routine eye exam two months ago.

"It is a concern," said optometrist Dr. Corina Buettner, who owns Nuvo Eye Centre. "It's scary to think of what the possibilities are. I'm glad we found it at this point, and we can do things about it."  

Study urged funding of CXL

Boich is petitioning the province to cover CXL under OHIP, and has so far collected 25,000 signatures online.

A study was completed after the official end of the provincial pilot project and handed over to the government in December 2016.

Dr. Sherif El-Defrawy is the ophthalmologist-in-chief at Kensington Eye Institute, which oversaw the project. He says the report shows evidence CXL is effective on patients with keratoconus or other conditions where there is progression of corneal warping. 

"Treating with cross-linking stops this progression completely or slows it down significantly," said El-Defrawy. "It's a value to patients with this condition. And patients with this condition in Ontario should be offered this treatment."

More than a year later the government is still reviewing those findings.

"Implementation decisions of this type are complex and require consideration of a number of factors," said Ministry of Health spokesperson David Jensen in a written statement to CBC News. "While the Ministry considers implementation options, access to the service is being maintained."
Six provinces and territories cover corneal collagen cross-linking, including British Columbia, Alberta, Saskatchewan, Quebec, New Brunswick and Yukon. (Ashley Burke/CBC )

Some ophthalmologists unaware of program

There are signs the interim program isn't widely known even among ophthalmologists, however. 

"I haven't told a patient there is a program, because I didn't know about it actually," ​said Dr. Mohammed Taha, a cornea specialist at Icare Surgical and Optical Centre. 

"I think it should be advertised more. I think every ophthalmologist should know about it and give that option to the patient."

Taha performs CXL, and said it's an effective and safe procedure that preserves eyesight and avoids the need for transplant surgery. It's minimally invasive and can be performed in about 45 minutes in an office instead of an operating room.

The procedure should be covered, he said.

"I don't think it's fair for patients to pay for a medically needed procedure to prevent them from losing their sight," Taha said. "I think it should be covered by OHIP because it's preventing a disease from getting worse."

"The Ontario government needs to step up," Boich agreed. "They need to wake up and see this is not an elective surgery. It's something that needs to be done. My vision is worth so much more than the pricetag."
Dr. Mohammed Taha, who performs CXL, says CXL is an effective procedure. "It costs less than a transplant, less visits to the doctors, less complications," he said. (Ashley Burke/CBC )