WATCH ABOVE: Families fighting for OHIP funding for U.S. surgery redouble their efforts. Global News took their appeal for help from the Minister of Health straight to him. Christina Stevens reports.
TORONTO — Families who have said it is impossible to get the proper paperwork to apply for OHIP funding for a U.S. surgery are appealing to the health minister for help.
Global News has interviewed seven families in the same situation. They all have little boys with cerebral palsy and they want to go to St. Louis for Selective Dorsal Rhizotomy surgery, which they said could help their children walk.
The surgery isn’t performed in Ontario, so the U.S. surgery is covered by OHIP.
READ MORE: Families fighting for childrens’ surgery rejected by OHIP
However, it has to be pre-approved, and families are required to submit a recommendation from a specialist for that approval.
But the families said pediatric neurosurgeons in Ontario won’t sign a recommendation.
“I’ve talked to neurosurgeons in Ottawa, in Toronto, in Sudbury. I’ve cold-called neurosurgeons,” said Carlene Anderson.
She said all of them refused to even see her son Mason for an assessment.
Global News told Health Minister Eric Hoskins about the parents’ concerns in early July.
But Hoskins still insists the refusals are not happening.
READ MORE: Outpouring of support after Global News story about boy who needs surgery
“My understanding is that they will see them,” said Hoskins.
When it was suggested to him that specialists are not seeing the children for an SDR assessment, the minister responded.
“Well, that’s simply not true,” he said.
Global News has documentation from The Hospital for Sick Children, McMaster Children’s Hospital and a specialist saying without more research, they won’t support SDR surgery.
SDR has been performed more than 2,500 times over nearly 30 years in St. Louis.
McMaster Children’s Hospital has since said they will see patients for an assessment through their spasticity clinic.
However, one of the doctors who would have to sign off in support of SDR, already advised one of the families that it is not a helpful operation, writing in an email that they should “seek other available treatment options.”
“It’s all predetermined by Sick Kids and Mac Kids that they will not approve children,” said Shana Ciampa, who is hoping her son Alesandro can get the surgery.
READ MORE: Doctors and health minister at odds over cerebral palsy surgery, families not getting funding
Ciampa went ahead and applied to OHIP for funding, but without a specialist’s signature she was rejected.
The same reason was given to another family in a nearly identical rejection letter.
The families are appealing to the health minister to order OHIP to fund the surgery, without a specialist’s letter.
“Minister Hoskins, we are asking you to help our son get this surgery,” said Carlene Anderson, who wants her son Mason to receive the surgery.
That was echoed by another mother.
“I would like to know if you would be willing to use your discretion to allow OHIP to pay for Kian’s surgery,” said Samadhi Mora Severino.
“We need your help,” was the plea from another mother, Melissa Perry. Perry’s son Nathan, who is seven, said waiting while his family tried to fund raise $100,000 to pay for the surgery and associated costs has been frustrating.
“I’m really looking forward to this surgery,” said Nathan.
READ MORE: Ontario family raising $100,000 for surgery so 3-year-old boy can walk
Hoskins said he feels for the families, “However I don’t have discretion,” he added.
A former OHIP lawyer disagreed.
“No, no, he’s got discretion to order OHIP to pay for any kind of service he wants OHIP to pay for,” said Perry Brodkin.
Hoskins later acknowledged he could, but wouldn’t wade into what he called a “clinical decision.”
He emphasized that families who were having difficulties accessing a pediatric neurosurgeon should contact his ministry for help.
He said the same thing when first interviewed by Global News on the subject in early July.
Two families who have worked with the ministry were rejected, leaving the others feeling there’s nowhere to turn.
“We just want what’s best for our kids,” said Perry.
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