Ontario Health Minister investigating after boy with eye disease denied funding

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Ontario's Health Minister has pledged to look into the case of a young boy who was denied government funding to treat a rare, congenital eye disease in the United States.

Deb Matthews told the family of two-year-old Liam Reid that although she can't personally intervene to overturn the decision, she will make sure procedures were followed. Liam suffers from advanced bilateral persistent fetal vasculature syndrome (PFVS)/Norrie's disease – a retinal condition that, if left untreated, would result in permanent blindness and the loss of both eyes by the age of four.

Ms. Matthews' pledge has given some hope to Liam's family. The Globe and Mail reported last month that the family spent more than $45,000 out of its own pocket for surgery and semi-annual follow-ups because Ontario's health insurance plan has repeatedly denied it funding, arguing equivalent care is available here. This was despite the fact that doctors in Toronto told the family they couldn't do anything more for Liam and directed him to a world-renowned surgeon in Michigan.

"I've asked my officials to go back and look very closely to make sure that every step of the process has been followed," Ms. Matthews said in an interview Thursday, after meeting with the Reids. She declined to speculate on next steps. "I don't want to get into any hypothetical situation right now. What I want to do is go back and satisfy myself that the process is working the way it's intended to work."

Liam and his parents came to Queen's Park Thursday to listen in on Question Period. Progressive Conservative health critic, Christine Elliott, raised Liam's case once again. Ms. Matthews told the Reids she would meet with them again after she gathered more details.

"It opens up the door that there is hope and that this wrong will righted," said Liam's mother, Kristina.

Liam's case highlights the growing squeeze on out-of-country coverage as provincial governments attempt to rein in health-care spending. OHIP tightened its rules around out-of-country treatment last year, hoping to save $28.5-million annually. Procedures that used to be funded aren't anymore, with OHIP arguing it has no obligation to pay for out-of-country care if the equivalent is available here.

But as the Reids discovered, while there may be a pair of hands to do the surgery in Ontario, the advanced skills required are often lacking.

Doctors in Toronto operated unsuccessfully on Liam's right eye when he was five months old. After an operation by Michael Trese, chief of vitreoretinal surgery at William Beaumont Hospital in Royal Oak, Mich., Liam now has light perception in his left eye, he can see light coming through doors and windows. While he will never have total sight, the aim is for low vision that will open the door to future therapies.

If the procedure hadn't been performed, Dr. Trese said, Liam wouldn't be in this position; the majority of children with this condition lose their vision by the age of four. The disease is so rare that Dr. Trese said doctors in Ontario wouldn't likely be able to offer the same specialized treatment for Liam.

Still, OHIP refused to pay and the Health Services Appeal and Review Board denied the Reids' appeal – even though the insurer has funded a handful of out-of-country PFVS/Norrie's treatments in the past. The family was forced to cancel Liam's last appointment in the U.S. because it couldn't afford the semi-annual visit, which costs roughly $5,000 each.

Ms. Reid is both optimistic and anxious about what Ms. Matthews' review will reveal. "If she's relying on a civil servant, who doesn't have a vitreoretinal background, I'm afraid that she's going to be misinformed, that we're going to get information that's not accurate," she said. "I'm still a little fearful."