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Two-year-old Liam Reid, who suffers from a retinal disease called persistent fetal vasculature syndrome, plays with his mother Kristina in Whitby, Ont. Wednesday, May 2/2012. (Kevin Van Paassen/The Globe and Mail/Kevin Van Paassen/The Globe and Mail)
Two-year-old Liam Reid, who suffers from a retinal disease called persistent fetal vasculature syndrome, plays with his mother Kristina in Whitby, Ont. Wednesday, May 2/2012. (Kevin Van Paassen/The Globe and Mail/Kevin Van Paassen/The Globe and Mail)

Matthews won't commit to funding treatment for boy with eye disease Add to ...

Ontario’s Health Minister was non-committal on calls to help fund a young boy’s rare, congenital disease in the United States, saying it is not appropriate for her to intervene.

“We have a very strong process in place where experts make decisions. It is not appropriate that politicians make decisions. I simply must rely on expert advice,” Deb Matthews said Tuesday in Question Period.

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She was commenting on the case of Liam Reid, a two-year-old boy who 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. The Globe and Mail reported last week that doctors in Toronto couldn’t do anything more for Liam and directed the family to a world-renowned surgeon in Michigan. The family has spent more than $45,000 out of their own pocket, because Ontario’s health insurance plan has repeatedly denied them funding, arguing equivalent care is available here.

Ms. Matthews said there are more services being brought to the province, such as bariatric surgery. “What I can tell you ... is that there is a process to get funding for out-of-country care and I urge the family to continue with the process,” Ms. Matthews said.

Progressive Conservative health critic Christine Elliott, who raised Liam’s case in Question Period, said the Minister clearly doesn’t want to acknowledge that there is no treatment available in the province because Liam’s disease is so far advanced, that the Reids have exhausted all avenues, and that Liam’s treatment in the U.S. has been successful. The Ontario Health Insurance Plan has funded a handful of out-of-country PFVS/Norrie’s treatments in the past, and in a landmark decision two years ago, the Health Services Appeal and Review Board ruled that the superior skills of a surgeon did, in fact, justify treatment in the U.S.

“I would suggest that when you’re faced with fundamental unfairness that we’ve see here that she [Ms. Matthews]would exercise discretion in order to make sure that the unfairness is taken away,” Ms. Elliott said in an interview.

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. Thanks to 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.

Kristina Reid, Liam’s mother, said she was “disgusted” by the Minister’s “complete ignorance” of the situation. The family had to cancel Liam’s April appointment because they couldn’t afford it. The semi-annual follow-ups cost about $5,000 each.

“Our Ontario specialist has indicated that nothing more can be done locally for our child. This same specialist supports our applications for treatment out of country. But still our applications for funding are denied. And when the Minister is asked to comment on this, she insists the treatment is available locally. But by who?” Ms. Reid asked.

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