Ontario myeloma patients await Velcade funding

Many people in Ontario, Saskatchewan and Quebec are celebrating this weekend after their provincial governments approved the expensive breast cancer drug Herceptin.

But for a group of people in Ontario suffering from a type of cancer with its own fast-tracked wonder drug that didn't get funded, the announcement brought only disappointment and feelings of desperation.

"You realize you need this drug and you can't have it, and there are no other options,'' said Dr. Donna Reece, director of the multiple myeloma program at Princess Margaret Hospital in Toronto. "They're terrified.''

Multiple myeloma is a blood cancer that slowly eats away at tissue in the bone marrow. There is no cure for the disease, Reece said during a break from a conference aimed at educating newly diagnosed patients.

But a drug called Velcade has been shown to batter it into remission for about 18 months in advanced cases where death would usually be imminent, she said. Health Canada approved Velcade in January and every other province but Ontario has made funding available for it.

Carolyn Henry has had multiple myeloma for almost six years and she said she can't believe Ontario is the only province in Canada to not fund the drug.

"My next appointment is in two weeks and my name could be on that list of people who urgently need Velcade,'' she said quietly.

"I have a daughter that just finished first year university. I'd really like to see her graduate, to get married. I have lots of living left to do.''

Reece, who has done some consulting about multiple myeloma with the drug company that makes Velcade but does not get paid for getting patients to take it, said since both Herceptin and Velcade were fast-tracked through the approval process, she had been hoping funding for both would come at once.

She called the moment when she figured out Herceptin would be funded but Velcade wouldn't "heartwrenching.''

"This is creating a real hardship for patients, because the drug is effective,'' she said. "It is life-saving when all other treatments have failed.''

Ontario Health Ministry officials say Velcade is still in the midst of the review process.

But Health Minister George Smitherman's comments at a news conference to announce Herceptin's funding didn't inspire optimism, Reece said.

Smitherman said funding Herceptin and two other cancer drugs would increase spending on cancer care in the province by up to 70 per cent per year.

He said this would result in some "tough choices'' when it comes to deciding what other drugs to fund -- adding it's hard to say no when lives are at stake, but it's impossible to say yes all the time. According to statistics from the National Cancer Institute of Canada, about 1,840 people are diagnosed with multiple myeloma per year, 730 of them in Ontario.

Reece said at least a couple hundred of these people could benefit from Velcade immediately, and over time every single patient could need it.

Dr. Brian Durie, who came to the conference from Cedars-Sinai hospital in Los Angeles, said he recently conducted a study in which Velcade was used as soon as people were diagnosed.

"It probably had the highest response of any drug that has ever been used as a first response,'' he said. "But for whatever reason, it isn't approved for use here in Ontario.''

The drug is about as costly as Herceptin. Reece said an average dose over five months would come to about $35,000.

"As a patient possibly needing this drug, I don't care how much it costs,'' said Henry. "How can you say you're not worth it?''

Durie said he has helped patients go to the United States to receive the treatment.

Reece said that's really the only option for Ontario patients right now since it can take months to get covered by another province's health plan -- so merely moving to Manitoba, for example, wouldn't mean an Ontario patient could get Velcade right away.

"I think we try to send people down to the U.S. but most people simply can't afford it, so it's not a realistic option,'' she said. "It's not the answer.''

Henry said she used to work as a nurse and never once thought Canada's health-care system would deny a patient something they need to survive.

"When you hear these arguments (about money), you feel very marginalized in our current society, as an individual,'' she said. "And I honestly thought that's what our health-care system was supposed to avoid.''