Local man buys time with $29K cancer treatment not available in Ontario
How much would any of us pay, sell or sacrifice to extend our lives by a year or two?
Hy Elmas kept his soul, but parted with $29,000 for a trip to London, England, in November to undergo a procedure to zap a growing tumour in his pancreas, one of the worst places to get cancer. And, every new day, he’s glad he did.
“I feel great. I have a good appetite. I have good energy. I even put on a few pounds,” he said recently at his Centrepointe home. Since his diagnosis last February — it would have to be the 14th, wouldn’t it? — Elmas, 69, has been on a mission to improve his own prospects and find out why the Ministry of Health is lagging in a treatment available in the U.S., Britain and Europe.
“How come they can afford all these things in their countries and we have none of that in Canada?”
Elmas, a retired property manager, travelled to England with his wife, Christl, and their teenage daughter, Aisha, to be treated with the NanoKnife, the commercial name for irreversible electroporation, or IRE, which uses electrical pulses to destroy cancer cells.
We’ve had such a device in Ontario since 2013 — with very limited use — and it’s undergoing clinical trials for pancreatic cancer that began in September at the Princess Margaret Cancer Centre in Toronto. The main part of the trial, involving 47 patients, is to take three years.
Elmas, who has Stage 4 cancer with a small spot on his liver that may have since disappeared, was not deemed eligible.
So his research for alternatives took on a new urgency. Via online searches, he already knew that the NanoKnife was being used with promising results in the U.S., Germany and London. One night, he even telephoned the German clinic and spoke directly to Dr. Matthias Birth, who has performed the procedure on at least 15 Canadians.
(But, upon seeing the Elmas imaging scans, Hy was deemed unsuitable for the German clinic.)
So Elmas turned to Dr. Edward Leen, a radiologist at the Princess Grace Hospital in London and a specialist in the NanoKnife, which uses up to 3,000-volt current in pinpoint applications around the tumour.
Elmas said he emailed him one day in early November and sent his scans along. Only days later, while at his cottage in Ladysmith, Que., his cellphone rang. It was Dr. Leen, inquiring about his well-being, even though it was 1:30 a.m. in England. Sure, he could help.
Within days, the family was on a flight to London, arriving on Nov. 26. (What the family most appreciated about Leen and Birth was the powerfully positive idea that something COULD be done with a terminal illness.)
“It was much better than what I’ve been offered so far,” said Elmas. He was admitted one day and walking out the next, nearly pain-free, for a stroll in Hyde Park.
Elmas said Leen was clear that this was not a cure for cancer. But there is a body of evidence to suggest it could at least double his life expectancy.
“I feel every extra day is a gift. So, I enjoy. My main concern is, before anything happens, I want to help as many people as I can, either by informing them about what’s going on or somehow getting a machine put together in Ottawa,” he said, steps away from the Christmas tree he wasn’t sure he’d put up. "So there is hope.”
He is under no illusions. Since his diagnosis, Elmas has looped in with several people in the pancreatic cancer community. He corresponded with fiery Hector Macmillan, 59, the mayor of Trent Hills, near Peterborough, who led a vocal campaign to broaden IRE treatment in Ontario.
Worried he was being “sentenced to death” by the Ministry of Health, Macmillan raised about $60,000 to be treated in Germany. He considered it successful, though he died in October, about 12 months after undergoing the NanoKnife. Similarly, ex-Ottawa Rough Rider Rick Sowieta died in August at age 63, about six months after an IRE procedure overseas.
Pancreatic cancer is considered the deadliest among the major cancers. About 4,800 people are diagnosed in Canada annually and roughly 75 per cent don’t survive the first year.
This month Elmas is headed back to his own doctor, where he will likely continue with chemotherapy, including a drug that might cost him $4,000 a month. He’s still trying to understand why Ontario health authorities can’t accept 15 years of data on IRE from around the world.
“There should be one in Ottawa. This is the capital of our country. And we do have a large cancer unit at The Ottawa Hospital, minus this instrument.
“Why? I’d like to talk to the Ministry of Health about that.”