Adolfo Flora's OHIP odyssey

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Adolfo Flora's OHIP odyssey

He had six months to live. He was rejected for a transplant in Ontario. Then he went overseas and beat the odds. But his fight had just begun, Isabel Teotonio reports

Jan 27, 2007 04:30 AM Isabel Teotonio staff reporterAfter receiving the grim diagnosis that he had six months to live, Adolfo Flora did exactly what the doctors instructed – he got his affairs in order. He updated his will and made financial arrangements so his wife and 13-year-old son would be cared for after he was gone.

It was Christmas 1999 and the 50-year-old Toronto high school teacher had been diagnosed with liver cancer – the result of a tainted blood transfusion that gave him Hepatitis C.

"The biggest blow was them saying you have six months, go home and get your papers in order," said Flora, the retired chemistry teacher, in an interview this week. "Even now, seven years later, the impact is indescribable."

Specialists told him a transplant was useless because the cancer was spreading. It was, he said, "the final nail in the coffin."

But a month and a half later, that nail loosened when Flora sought a second opinion and was told the outlook wasn't so bleak. Suddenly, the spectre of death was replaced with a will to live. "We now had hope where before there was none," recalled Flora, who eventually went to England for a liver transplant after being denied in Ontario.

That turning point sparked a long fight with the health-care system, one that ended last week when the Ontario Divisional Court rejected his appeal of an earlier decision and ruled he would have to pay the $450,000 cost of his life-saving treatment.

Back in 1999, transplant specialists in Ontario said he was unsuitable for a transplant because the tumours in his liver had grown too large. Even with a new organ, his chances of survival were slim.

It was a prognosis his friends, family and even his physician refused to accept. They scoured the Internet, rifled through medical texts and contacted international experts. His brother, an ophthalmologist, drafted a list of about 40 experimental treatments being done overseas. Even Flora's 82-year-old mother offered up her own liver.

In England, doctors recommended chemoembolization – a treatment that Ontario considered then to be experimental.

British doctors told Flora his only shot at beating the cancer would be a liver transplant from a living donor – his brother, Dr. Flora, who agreed, without hesitation.

"There was no choice, nothing to think about, no decision other than `When is it going to be done?'" recalled the 59-year-old eye specialist. "Livers regrow. And so what if you have a scar that looks like a Mercedes symbol on your gut?"

To pay for the $450,000 treatment, Flora drained his savings, borrowed money from a close friend and used the proceeds from the sale of his mother's home.

Although the operation was a great success, with Flora beating the odds and the cancer, his fight wasn't over.

The Ontario Health Insurance Plan refused to pay for the overseas treatment because the experimental chemo was not part of the insured services and Ontario specialists had rejected him as a transplant candidate. The Health Services Appeal and Review Board later upheld the decision.

In last week's court ruling, the judges said the government does not have to do everything possible to save the lives of its citizens in every circumstance.That ruling was the final blow for a man who, for the past seven years, has been on what he describes as a "debilitating" emotional roller coaster. He had hoped that the one indisputable piece of evidence in his case – being free of cancer and Hep C – would have tipped the balance in his favour.

"People have to know there are limitations with their health-care system, and those limitations may impact their lives," said Flora. "People tend to get lulled into a sense of complacency. I did." Flora's story begins with a routine surgery in 1973 to remove a benign tumour from his esophagus that was causing his stomach to contract.

But during the procedure, a vein was accidentally nicked, which caused heavy bleeding and he consequently required a blood transfusion.

A routine check three years later revealed he had contracted Hepatitis C, a viral disease that can result in cirrhosis of the liver and liver cancer.

He says he could have launched a lawsuit but didn't. Having doctors in his family, he knew that doctors can also make mistakes.

From 1979 to 1999, liver specialists monitored Flora's condition. But a couple of years passed without doctors running a full battery of tests on him. By November 1999, Flora was already in the advanced stages of liver cancer and not a suitable candidate for a transplant.

The death sentence came when specialists said the cancer had invaded the portal vein, which carries blood to the liver.

"I was at fault. I wasn't an aware consumer," recalled the soft-spoken Flora, as tears welled up in his eyes. "A simple test would've picked up the cancer at an earlier stage..." The weeks following that bleak prognosis were the most difficult of his life. He and wife Marijana tried to remain optimistic for their son, , but each time Flora sat down to deal with his estate, the grief was overwhelming.

The couple, who taught at the same school, stayed on until Christmas when he took early retirement. Marijana also did not return in the new term because she planned to spend those final months with her husband.

A flicker of hope appeared after a new physician, Dr. Florence Wong, sent him for a second ultrasound. It turned out the portal vein was not invaded.

Wong explored treatment options with various Ontario specialists, but because his cancer was advanced, they said he wasn't a suitable candidate for a transplant from a dead donor, given the scarcity of organs. And a living-related liver transplant from adult to adult, in which a portion of a living donor's liver is transplanted, had never been done in Canada.

"We were running into closed doors in Ontario so we decided to go to Europe," said Flora. At London's Cromwell Hospital, chemoembolization treatments shrunk the tumours substantially but doctors warned the only way to get rid of the cancer was with a transplant. But the wait for an organ from a dead donor was eight months – time Flora didn't have.

His only alternative was a living-related transplant, which had been done at that British hospital numerous times. And his brother was the only potential donor.

There was "zero choice," explained Flora, a father of two daughters. "You either help someone you love or you ignore someone you love. ... I think everybody would make the same choice."

Before the brothers and their wives set out for England, Wong completed a form seeking reimbursement from OHIP for the cost of his treatment in England. The claim was denied, but it did not dissuade them from pushing ahead with the 10-hour operation in March 2000.

A week after the procedure, the first living-related liver transplant on adults in Canada was performed in London, Ont.

Flora believed the worst was behind him, but he was forced to relive much of it when he appeared before the review board to fight OHIP's refusal to pay his treatment bills. "It brought back everything in vivid technicolour," recalled Flora, adding the lengthy legal battle also opened fresh wounds.

On one occasion, a lawyer for OHIP said his treatment should not be funded because it was still uncertain if Flora would even survive.

"She said that in front of me to the review board," he recalled. "I felt like screaming at her and saying I was going to be here longer than she was."

Flora appealed the board's decision to the Ontario Superior Court of Justice and believed the mere fact that he was alive had proven his case.

But not so.

Now Flora says the "apparent callousness" of last week's decision has left him questioning the government's responsibility in providing health care.

While he understands there's a fear in opening the floodgates to claims for alternative treatments in other countries, he points out he did not go to some backwater country for an experimental procedure. "I'd like to see those limitations on the (health-care system), if not erased, then modified in such a way to accompany the needs of every individual," he said.

"Because Ontario is not necessarily at the forefront of every medical innovation, Ontario's people cannot take advantage of everything that is available internationally."

His comments were echoed by his brother Flora.

"What have I learned from all of this? Number one: Don't trust our health-care system for anything.

"And Number two: You have to be your own advocate. ... You have to work at finding appropriate information for the problem you've got, but you then have to find a way of sorting through the information to ensure you're looking at the right thing to do, and that's the hard part."

http://www.thestar.com/News/article/175529