Ontario cancer patients petition for drug funding

Source: http://toronto.myeloma.org/york_region_interview.htm

The dates are etched in their memories, intertwined with other landmark occasions that map a human life. For Marion State, it was June 1996. Dorothy Plourde recalls July 1999. Everyone remembers when they were diagnosed with cancer.

A retired Thornhill nurse, Ms State was told she had multiple myeloma, a relatively rare and incurable bone marrow cancer leading to immune dysfunction, brittle bones and kidney failure. Some 1,800 Canadian cases are reported annually.

Doctors gave her seven years to live.

Undaunted, she founded the Toronto and District Multiple Myeloma Support Group in 1997. There are 350 members -- myeloma survivors, family members and caregivers -- underpinning each other and sharing information on the condition and treatment options.

Last Jan. 31 was another significant day for the group.

On that winter day, hope was delivered by Health Canada when it approved Velcade, a new drug treatment for multiple myeloma patients who are unresponsive to current front-line therapies.

The Ortho-Biotech drug, which won its research scientists a 2004 Nobel Prize in chemistry, is available through all provincial drug programs except Ontario where, at 730 new cases per year, myeloma is most prevalent. Here, only a handful of clinical trial participants can access the treatment proven to disrupt the growth of myeloma cancer cells.

At a cost of $7,200 for a 21-day course of treatment, Velcade is out of reach for most patients. The Ontario Drug Benefit plan continues to hedge on funding approval for Velcade, saying it is currently eighth in the queue for discussion, and an answer won't be forthcoming for at least eight to 10 months.

Myeloma patients can't wait that long, said Ms Plourde, a North York retiree who is one month into a clinical Velcade trial at Princess Margaret Hospital.

"At diagnosis, I had two stem cell transplants and Thalidomide as maintenance therapy," she said. "It worked for a while then I came out of remission. I was told Velcade would work best for me and I was accepted into the eight-month trial.

"The only way to get it is to travel downtown. It takes five hours out of my day to get a three-second infusion."

Ms State's research suggests myeloma is the second fastest-growing blood cancer in North America.

"With new therapies such as this we have a longer quality of life," she said. "Ontario is dragging its heels. It's the only province without a process in place to provide Velcade. No one has heard of myeloma. The other cancers get the big bucks."

Ms State and her group have pushed the issue, briefing Thornhill MPP Mario Racco on the government's dangerous procrastination.

"I have written the (health) minister," Mr. Racco said. "We have spoken. Unfortunately it takes time. We must follow normal protocol with out slowing (the process) down."

Meanwhile, myeloma patients must wait for yet another hopeful date.

"It's sad for us, we're losing our friends," Ms Plourde said.

"Lives are at risk," Ms State added. "I hope we get approval. Right now the province is doing us a disservice."

For information, visit www.toronto.myeloma.org
Chris Traber, Staff Writer - York Regional Newspapers