Desperately seeking care

By MARGARET WENTE

Saturday, March 23, 2002  Page A15

"The beginning was not particularly ominous," says Ralph Smith. "I was approaching 50, I knew I should start watching out, so I asked my doctor about PSA testing and he said, 'I guess it's not a bad idea.' "

The PSA test is the standard screening test for prostate cancer, which is the most common cancer in men. It's the test that detected Allan Rock's cancer. After his successful surgery, Mr. Rock, the former health minister, became a poster person for early detection and treatment.

Mr. Smith and Mr. Rock make for an interesting parallel. The two are nearly the same age; at 53, Mr. Smith is a year younger. Both work for the government and live in Ottawa. Their PSA tests both turned suspicious around the same time in 2000. After that, their stories diverged.

Mr. Rock, who is said not to have received any special treatment, became a glowing testimonial for a health-care system that, despite its woes, still works.

Mr. Smith's story has a different lesson. Trust the system, and it could kill you.

After his first suspicious PSA result in August of 2000, Mr. Smith's doctor retested him and referred him to a urologist. Waiting lists in Ottawa were long, but Mr. Smith says he wasn't particularly concerned. He waited more than three months for the appointment, which was in February of 2001. "The urologist said, 'I really recommend a biopsy because your PSA levels are a little high and I detect a nodule.' Then I started to get a little worried."

The urologist, meanwhile, wrote to Mr. Smith's family doctor saying he strongly suspected a malignancy -- though he didn't tell his patient that.

Mr. Smith had a biopsy in March. The diagnosis: cancer of the prostate. His urologist told him the good news was that they had caught it fairly early, and they agreed that surgery was the answer. Then the urologist told him the bad news. He had one of the longest waiting lists in the city. Mr. Smith would have to wait for months.

Meantime, Mr. Rock had been cured and was back at work. His family physician is a well-connected, high-profile doctor in Toronto, where urologists' waiting lists for surgery are often shorter than they are in Ottawa. Mr. Rock had his surgery as soon as the biopsy revealed the bad news.

Back in Ottawa, more tests revealed more bad news for Mr. Smith. They indicated that his cancer was the aggressive kind. He had moved from low risk to high risk.

Mr. Smith is better armed than most to meet the challenges of being a cancer patient. As a policy analyst and adviser on homeless issues, he's used to doing research and dealing with complexity. He's also married to a doctor. His wife, Fionnuala O'Kelly, is a pediatrician.

But none of that did any good. They could not pull strings. They also found that there was no triage system for prostate-cancer patients; everyone had to stand in the same line. Their doctor wouldn't refer them to someone in Toronto, where, in any case, quicker treatment was not guaranteed. They were also wary of switching to a doctor whose track record was unknown to them. "It's a long operation," Mr. Smith says. "If it's mishandled, you could be impotent and incontinent."

It was the end of April now, and they were helpless.

One day, Mr. Smith's wife asked another cancer doctor what he would do if he were in their shoes. "I'd get on a plane to the Mayo Clinic next week," he said.

Instead, Mr. Smith went to England, where a relative had recently been treated by one of the world's top specialists. He contacted the specialist's office on the weekend. On Monday, the office called back and told him that, if he could be in London by Friday, they would operate on Saturday.

They were. The surgery was successful. Mr. Smith's cancer was indeed very aggressive. He learned that it probably would have spread to his lymph nodes and surrounding tissues in a matter of weeks. When prostate cancer spreads, it can't be cured.

"I never would have thought of doing this," Mr. Smith says now. "I come from Saskatchewan, the home of medicare. I'm a bit of a student of our big social programs."

When Mr. Smith returned home, he applied for reimbursement from the provincial health-care plan for the cost of his treatment, which was about $17,000. He was turned down, on the grounds that appropriate treatment was available in Ontario. He decided to appeal. So he and his wife began their research again, gathering facts and figures on the availability of urologists and the length of waiting times. They had to prove that further delay would have put him at significant risk, and that the long wait for treatment wasn't his fault.

Last November, they made their case before an independent appeals board. This week, they learned that they have won. The government will have to pay them back.

There are likely to be many more Ralph Smiths, because there's no quick fix for what ails cancer care. One reason for long waiting lists for surgery is that operating rooms are dark. There aren't enough nurses and anesthesiologists to staff them.

Some cancer experts say there's an even bigger problem than waiting lists -- access to new drugs. Canada's health bureaucracy is slow to approve them, and the provinces are even slower to agree to pay for them because they're so costly. "Doctors have a gag rule imposed on them if they're working in cancer centres," said one clinical oncologist recently, before he left Canada to practice in the U.S. "They can't tell patients about the newest treatments which they know are being tested and probably work, because the director will come down on their head."

But the worst problem is probably the demographic time bomb. Mr. Smith and Mr. Rock belong to the first wave of baby boomers to reach the prostate-cancer age. There are millions more men right behind them. The system isn't coping well now, and soon it could be overwhelmed.

"What I'd like to tell Roy Romanow is that my story is one that many cancer patients have," says Mr. Smith. As a man who makes his living studying social policy, he's got a few suggestions. "It's not about facilitating people leaving the country to seek surgery somewhere else. And it's not about setting up a two-tier health system. It really is about ensuring that people who are at risk receive timely treatment here in Canada."

That will be a formidable task. Meantime, don't trust the system to take care of you. As Mr. Smith found out, "It comes down to the patient having to do it himself."

mwente@globeandmail.ca