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Doctors and health minister at odds over cerebral palsy surgery, families not getting funding

TORONTO — According to several families with children who have cerebral palsy, no specialist will sign the forms necessary for OHIP to cover a crucial surgery for Ontario patients in the U.S.

The families are hoping to get selective dorsal rhizotomy surgery, which has the potential to allow their children to walk without any help and is an insured service, covered by OHIP.

However, to get the coverage families require a signed form from a doctor saying the surgery would be appropriate treatment for their child.

The mother of six-year-old Alesandro Ciampa says they can’t get that form, even though she approached pediatric neurosurgeons she knew had signed the papers for other children in the past.

“I think we just somehow missed the boat because we were told they can no longer assess him,” said Shana Randhawa.

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She said she was told “no” everywhere she tried.

She has been helping parents through the process after seeing how much it improved her son Aidan’s ability to walk.

“I know another mom that has called every neurosurgeon she can find in all of Ontario, and everybody is too scared and doesn’t want to do it,” said Visentin.

She knows at least 10 other families in the same situation and just five children have been approved for OHIP coverage in the last five years.

SDR has been performed for almost 30 years in St. Louis, Missouri, on more than 2,500 patients.

A slightly different version is done in Vancouver and Montreal, but doctors in Ontario appear to have changed their position on it — although it’s not exactly clear why.

In a statement provided to Global News, The Hospital for Sick Children wrote that they “believe that more research needs to be done” with regard to the surgery.

McMaster Children’s Hospital has SDR listed as an option on its own website, but in a rejection letter written to a family requesting an assessment they stated that they are still working on a consensus on the surgery.

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“For the time being we will be unable to accept this referral,” read the letter.

But the provincial health minister still insisted that doctors in Ontario will sign the required letter.

As for the suggestion that doctors won’t sign the form, he said “that runs contrary to my understanding.”

When Global News asked Hoskins to provide the names of qualified specialists who would sign the forms, he referred us to his staff, who did not provide any names.

Alesandro’s family can’t wait any longer and is raising $100,000 in an online fundraising campaign to go ahead on and get the surgery done on their own.

Something Alesandro is looking forward to.

“It has to take a few months, then you could run, you could go climb, you could skate,” he said.

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