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Unwanted patient battling OHIP over surgery

Sevan Hajinian suffers from very severe back pain, due to a spine problem that doctors are reluctant to operate on because it is so complex. The case is before the Health Services Appeal and Review Board which will decide whether it will pay for her to have an operation done by a world class surgeon in New York City.

Peter Power/The Globe and Mail

Sevan Hajinian suffers from agonizing back pain, and the surgery to correct it would be so complex that she has been unable to find a Canadian surgeon willing to do it. For three years, she has been offered little more than painkillers and crutches - making her the unwanted patient.

The 50-year-old is in so much pain she requires eight Percocet pills a day. But she is locked in a health-care limbo: The only spine surgeon she has found willing to perform a decompression and fusion on her is based in New York City, and the Ontario Health Insurance Plan refuses to pay the cost, estimated at $175,000 (U.S.), including physician fees and a one-week hospital stay.

Ms. Hajinian's case raises the question of how many specialists a patient must contact before the province agrees to fund treatment outside of Canada.

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"One could ask how many people need to die before someone decides it is a ministry [of health]responsibility to co-ordinate resource availability so people don't die looking," Ms. Hajinian's lawyer, David Baker, said in a telephone interview.

OHIP will pay for out-of-country treatment if it is deemed medically appropriate, is unavailable in Ontario and not experimental. It is also covered if it is available but the wait would cause medically significant irreversible tissue damage.

Ms. Hajinian has been diagnosed with pseudarthrosis, a failed spinal fusion characterized by movement at the fused site. She also suffers from nerve-root impingement. Almost three decades ago, a steel rod was placed in her back due to scoliosis, a curving of the spine. At least four Ontario surgeons have refused to operate on Ms. Hajinian for the pain she is experiencing now, saying it would not help; one said it was beyond his expertise. A Toronto surgeon initially offered to do it, and then declined. The family's efforts to find a willing surgeon in Vancouver were futile.

Jean-Pierre Farcy, a clinical professor of orthopedic surgery at New York University and a world-renowned spine surgeon, has agreed to operate, which he said would improve Ms. Hajinian's condition.

Without surgery, "she could end up with paraplegia, which, as a person of her age, is catastrophic," Dr. Farcy testified by telephone last week during an expedited hearing of the Health Services Appeal and Review Board.

The board hears appeals when the province refuses to fund out-of-country treatment. An expedited hearing is typically called when prolonging the treatment could have serious ramifications for the appellant.

When Dr. Farcy met Ms. Hajinian, in July, 2009, he recommended a decompression, which involves removing the source of nerve compression. She also requires a fusion - surgery to join two vertebrae in the spine, making it more stable.

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Her case is complex because previous operations have left scar tissue, and the steel rod in her back may have to be replaced. She sustained life-threatening complications in the previous surgery, including a cerebrospinal fluid leak, meningitis, a blood clot and an embolism.

OHIP is refusing to pay. Documents from OHIP dated May 9, 2011, and filed before the board, said the operation is available here and that Ms. Hajinian has produced no evidence from an Ontario physician that a delay would cause death or irreversible tissue damage. The document did not identify any Canadian doctors who would do the operation.

"Their case has boiled down to, 'We got a whole lot of really good back surgeons out there and there are two or three you probably haven't called yet,' " Mr. Baker said in a telephone interview. "They conceded it's medically necessary and it's appropriate."

So Ms. Hajinian is again scrambling to find a spine surgeon, an onerous task given that waits for a first appointment are usually months to a year.

With huge demand for spine surgeons - many from patients who ultimately will learn they are not eligible for an operation - the system is in gridlock. This inefficiency comes at a cost: Ontario paid for 89 spinal patients to receive care outside of Canada from April, 2007, to December, 2010, according to the latest government figures.

At the appeal board hearing last week, Ms. Hajinian's brother, Aris Babikian, a citizenship judge, testified that a Scarborough-based spine surgeon examined his sister on May 16 and said what she required was beyond his expertise. The surgeon told Mr. Babikian that he supported the idea of having the surgery in New York.

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Mr. Babikian testified about the psychological impact of the surgery delay on his sister. She is volatile, fighting with her husband and daughters, and anxious about whether she will have to pay for surgery the family cannot afford.

He said she has suicidal tendencies, and several months ago left the house and the family had to file a missing person's report.

Mr. Babikian has moved in with his sister and her family to help out. But it has come at a cost, he testified: "I personally don't have a life any more."

Ms. Hajinian said the physical pain and uncertainty has greatly affected her life, which she describes as "hell."

The pain forced her to leave her job as a manager of a dental office. At the appeal board hearing, she winced with every step; she had to go into the hallway because she could not sit through the entire hearing.

She has been told to use a wheelchair, but refuses.

"I push myself to do things because I know if I don't move and I stay in bed, my muscles will weaken," Ms. Hajinian said in an interview. "I need the wheelchair, but my kids don't want to see me in one."

Ontario Health Ministry spokesman Andrew Morrison said he could not comment on an individual case.

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