Drug funding fight life and death for man with rare disease
Roy Green, Staff Writer The Richmond Hill Liberal
02/24/05 00:00:00
Rick Sgroi says he's living on borrowed time, caught in a battle between a drug company and the Ontario government over the costly therapy he needs to stay alive.

The Richmond Hill man suffers from Fabry's disease, a rare genetic disorder that causes fatty buildup in the heart and kidneys until they eventually collapse.

For the past 3-1/2 years, he has received twice-monthly treatments of an enzyme replacement therapy called Fabryzyme at North York General Hospital.

But drug company Genzyme Canada has stopped providing free Fabryzyme treatment for the 30 Ontarians with the disease and wants the provincial government to start paying because the therapy was approved by Health Canada last year.

Ontario refuses to fund the treatment, which costs $25,000 per month, and is awaiting a report from an expert panel that earlier recommended Fabryzyme not be covered by the province.

Although Health Minister George Smitherman blames Genzyme for withdrawing the treatments, Mr. Sgroi is furious at the government's refusal to pick up the tab.

"More than 40 countries, including Third World countries like Croatia, are funding enzyme replacements, but not here," an angry Mr. Sgroi said this week. "Since when are we below a Third World country?"

Mr. Smitherman promised to fund treatments after the death of a Kitchener man with Fabry's disease, Mr. Sgroi said.

"(Mr.) Smitherman wrote to the man's wife and assured her that enzyme therapy would be approved, but now two of my friends with the disease have been cut off and their symptoms are coming back after only two weeks."

Mr. Sgroi's drug company-funded treatments are due to end in June and he fears a return to painful symptoms that plagued him for much of his life before he began receiving enzyme replacement therapy.

"I don't need to wait for any report, I know (the treatment) works," he said. "More than 50 per cent of the fatty substance disappeared since I began treatments."

Yesterday, a Genzyme spokesperson said Mr. Smitherman's comments that the company was continuing treatment to patients in British Columbia but not Ontario were incorrect and misleading.

"There isn't any special deal with any province and the company is drafting a letter to Mr. Smitherman to confirm that," the spokesperson said.

Oak Ridges Tory MPP Frank Klees, who forced a special debate on the subject in the legislature Tuesday, said Mr. Smitherman's suggestion that Genzyme continue free treatments was an insult to Mr. Sgroi and other sufferers.

"This drug company, as much as (the minister) wants to demonize it, has already done its part in providing it free during a lengthy trial period," Mr. Klees said.

"There is always an understanding the drug company will get paid for the drug. It's just a foolish and very insulting comment on the part of the minister, particularly in the context of his promise to fund the treatment."

During Tuesday's debate, MPP Jim Brownell, Mr. Smitherman's parliamentary assistant, said the committee studying the treatment had been provided with additional information on Fabryzyme and is expected to make a recommendation this spring.

Mr. Sgroi said he and his brother were born with the disease but it went undetected until seven years ago.

"We went back and did a family history and discovered all my mother's family died as a result of Fabry-related disease," he said.