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Rose, who suffers from a rare spinal problem and had surgery at Kansas clinic and it was eventually funded by the Ontario government, poses for a photo in her home in Markham, Ontario, Canada. (Deborah Baic/The Globe and Mail/Deborah Baic/The Globe and Mail)
Rose, who suffers from a rare spinal problem and had surgery at Kansas clinic and it was eventually funded by the Ontario government, poses for a photo in her home in Markham, Ontario, Canada. (Deborah Baic/The Globe and Mail/Deborah Baic/The Globe and Mail)

Ontario looks to change the rules for those with rare conditions Add to ...

The operation was so risky and rare even the best neurosurgeons in the patient's home province had performed it just a few times. But surgery was the only way to relieve the severe pain and numbness from the 50-year-old woman's giant spinal cysts.

It took three years for that patient, Rose, to get an accurate diagnosis. Once she located the world's foremost expert in the United States, getting the province to reimburse her $38,000 U.S. for the high-risk surgery required a year-long battle and a four-day hearing.

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"It took everything to win," said Rose, who spoke on the condition her last name not be used. Her operation was done in Kansas City in November, 2010.

Rose is believed to be the second Ontarian to argue successfully that a surgeon's superior skill justified having the province pay, according to the recently released decision. She may also be the last.

Currently, patients like Rose - those with rare conditions that require treatment from experts outside the province - apply for government funding to have their procedures done. Under a suite of changes to the Ontario Health Insurance Plan called the Excellent Care for All Strategy, the province will make it virtually impossible for people whose applications are rejected to win under appeal, according to Perry Brodkin, a health lawyer who represents patients before the Health Services Appeal and Review Board.

Starting on April 1, surgeons in Ontario may perform even relatively rare operations so long as the procedures are considered within their "scope of practice," he said. The public has until March 13 to voice concerns about the proposed regulatory changes for out-of-country treatment, expected to save $28.5-million annually.

"This legislation makes patients guinea pigs because they're not going to get the foremost expert in the world," Mr. Brodkin said. "Under the new rules, that surgeon may have never performed the surgery or may have performed it only once."

Mr. Brodkin conceded the amendments may enhance patient safety in the long term because doctors will gain more expertise on rare procedures. In the interim, he said, some patients may be going under the knife with a doctor who has little experience.

More broadly, the changes are a reminder of how Canadians need to be savvy about their medical care and ask surgeons how many times they have performed a given operation, and about their death and complication rates. It also raises a delicate debate: How many operations does a surgeon have to perform to be considered proficient?

Neurosurgeon Frank Feigenbaum of the Research Medical Center in Kansas City, who operated on Rose's Tarlov cysts, said in a letter entered as an exhibit before the appeal review board that the surgery is extremely intricate, complex and a "very scarce commodity."

"There are only a few surgeons in the world with experience and proven good outcomes with surgery for these rare giant cysts who would even attempt this surgery," he wrote. "I am one of those surgeons."

Tarlov cysts are fluid-filled sacs that often affect nerve roots at the lower end of the spine. While smaller ones typically cause no symptoms, the larger ones Rose had cause bowel and bladder dysfunction.

Reta Honey Hiers, president of the Tarlov Cyst Disease Foundation, testified that no Canadian physicians were on her list as having expertise to operate on such cysts; the one Ontario surgeon that was listed had asked to be removed.

But Toronto neurosurgeon Charles Tator testified that Rose could be treated in a timely fashion in Ontario. He had treated five patients over his career of nearly 50 years and he believed other neurosurgeons treated a similar number of cases, according to the board decision.

Mr. Brodkin said government likely proposed the regulatory changes to prevent more successful appeals like that of Rose and Brad Remigis, who last year won his bid to have the province pay for him to have a bleeding lesion in his brain stem repaired by a U.S.-based world expert.

But Ontario Health Minister Deb Matthews said the legislation is about making decisions based on the best available medical evidence.

"In very rare cases where there isn't that expertise here, then we will continue to fund the out-of-country," Ms. Matthews said in a telephone interview. "We need to build up our expertise here, and doctors will not perform procedures for which they are not competent."

Ms. Matthews said the public should expect a change in coverage as the province moves to finance only what is medically necessary. For example, as part of the same changes, government is limiting the number of sleep studies, bone mineral density testing and Vitamin D testing.

She said the health care system is precious and "we must take steps to ensure that the dollars we spend are actually improving patient care."

As for the public consultation, Julie Ingo, manager of the fee-for-service program unit in Ontario's health services branch, said that so far, two enquiries have come in from the public, both which were relatively positive.

Today, four months after her surgery, Rose says she is recovering well. Unusually, she represented her own case and won, and hopes the proposed changes don't impair other patients to win their appeals.

"I need to advocate for those out there," she said.

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