TORONTO — It was a defeat, but not the end of the battle for Alesandro Ciampa’s family.
They lost their appeal to the Health Services Appeal and Review Board, in their attempt to force OHIP to pay for the little boy’s potentially life-changing surgery in the U.S.
Alesandro has cerebral palsy and Selective Dorsal Rhizotomy surgery, which is available in St. Louis, could help him walk better.
READ MORE: Family says cerebral palsy surgery not available in Ontario is success in U.S.
OHIP will pay for it, as long as the family can get an Ontario specialist to sign off.
But that hasn’t happened.
The Ciampas and several other families have told Global News they can’t find any pediatric neurosurgeons in the province to sign the forms.
READ MORE: Family fights back against OHIP’s refusal to pay for son’s surgery in the U.S.
The government denies that. Alesandro’s mother said they went into the appeal with slim hopes.
“No surprises, this is the verdict we expected,” said Shana Ciampa.
She found it curious that two parents scheduled to testify in the hearing for her, had reason to back out at the last minute.
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“One was approved and one was given an expedited appointment directly with the neurosurgeon,” she said.
A look back at the appeal board decisions over the last five years, reveals on average about 87 per cent of appeals are denied.
One former OHIP lawyer said the process is unfair.
READ MORE: Families fighting for childrens’ surgery rejected by OHIP
Perry Brodkin pointed out that OHIP hires lawyers and pays substantial sums to witnesses, whereas the families are often unrepresented.
He said he has argued for years for the process to be made more equitable.
“For those years nothing has ever changed,” said Brodkin.
READ MORE: Outpouring of support after Global News story about boy who needs surgery
The health minister was unavailable for an interview, but a spokesperson sent a statement to Global News.
It said that patients “may appoint a lawyer or advocate to speak on their behalf,” but didn’t address the point that they would have to pay for that.
Ciampa plans to take the highly unusual step of appealing the appeal decision, which means going to divisional court. “We’re going to see this through, all the way,” said Ciampa.
READ MORE: Doctors and health minister at odds over cerebral palsy surgery, families not getting funding
But there is little point and a lot of risk, according to Brodkin. “Because first of all your appeal would be dismissed by divisional court, secondly the costs are substantial, thirdly the costs could be awarded against you if you are unsuccessful,” he said.
But Ciampa said they are fighting on principle, and for other kids in the same situation.
Global News has interviewed more than a half dozen families who have also been trying to get OHIP to pay for SDR surgery.
READ MORE: Ontario family raising $100,000 for surgery so 3-year-old boy can walk
Most of them have been fundraising the more than $100,000 needed to go it on their own, including the Ciampas.
They said thanks to an outpouring from the community, Alessandro’s surgery is scheduled for Tuesday and they have already started the drive to St. Louis.