Ontario refuses to pay for blind boy's treatment in U.S.

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Kristina Reid wishes this for her two-year-old son Liam: To see the mature trees that line their street, and his own blond curly hair – but mostly, to see his two older brothers, his father and her.

Liam suffers from advanced bilateral persistent fetal vasculature syndrome (PFVS)/Norrie's disease – a rare, congenital retinal condition that, if left untreated, would result in permanent blindness and the loss of both eyes by the age of four. Doctors in Toronto operated unsuccessfully on Liam's right eye when he was five months old. They informed the family they couldn't do anything on the other eye because the disease was so far advanced, directing the Reids to a world-renowned surgeon in Michigan instead.

The family began making the five-hour drive from their home in Whitby, Ont., to suburban Detroit, starting in November, 2009, for surgery and semi-annual follow-ups. So far, they've spent about $45,000 on medical expenses, with every expectation of being reimbursed.

But the Ontario Health Insurance Plan (OHIP) has refused to pay for Liam's care and, in January, 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 board's reason: "The appeal board finds that the identical or equivalent procedure … is available in Ontario."

Liam's case highlights the growing squeeze on out-of-country coverage – in Ontario and elsewhere – 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.

The Ministry of Health has declined to comment on the specifics of Liam's case. The question of when patients receive out-of-country reimbursement is a grey area: In a landmark decision two years ago, the appeal board ruled that the superior skills of a surgeon did, in fact, justify treatment in the United States. A health lawyer representing the family has requested records from Ontario's Information and Privacy Commissioner on funding of other PFVS/Norrie's disease cases in an attempt to bolster Liam's case.

There are no statistics on how many children are born with the disease because it's so uncommon, according to Michael Trese, chief of vitreoretinal surgery at William Beaumont Hospital in Royal Oak, Mich., who performed Liam's successful surgery. Dr. Trese has what is believed to be the largest pediatric retinal practice in the world, and sees about 12 cases of PFVS/Norrie's a year.

"I don't entirely fault the [Ontario]health-care system because they have so many demands on them to try and keep costs down. And that's a responsible thing to do. But I also think you've got a responsibility to the child and to their family to treat as best as possible, not abusively, but to do what you can," Dr. Trese said. "I think it's wrong to close the door on that."

Thanks to Dr. Trese's surgery, 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.

Wai-Ching Lam, one of the vitreoretinal surgeons at Toronto Western Hospital, concurred in a letter of support for the Reids' appeal. "…We certainly do not have the same amount of expertise as Dr. Trese. His aggressive and innovative management in pediatric retinal disease including [PFVS]is unmatched in his field."

The Reid family has done fundraising and dipped into their savings for Liam's operation and follow-ups. They couldn't afford to take Liam to his April appointment. The semi-annual visits cost about $5,000 each.

"How can OHIP be denying [Liam's]funding when I didn't have anywhere else to go, and [his]surgery was successful?" Ms. Reid asked. "I feel like they don't care. They don't see that there's a person behind this appeal number. They don't see that there's a little baby who is living blind behind this appeal number and that there's somebody out there that can help. They see the bottom line and that's it."