A dying man’s plea for the medicine that could help him
He and others must shell out thousands since Ontario won’t pay for promising drug
It was supposed to be the start of a new chapter in life.
It was fall 2010 and Donna Kulchyk had just retired after 33 years of teaching. She and her husband, Bob, had been married 25 years.
They went to Hawaii to celebrate, with a four-day stop in San Francisco on the way home to Mississauga.
Bob and Donna were on a tour bus traversing the steep hills of the California city when he had a seizure.
At the hospital, after a battery of tests, the Kulchyks got the news.
Brain tumour. Six months to live, maybe a year.
Glioblastoma multiforme (GBM) is the most common and most aggressive primary brain tumour. It is not curable and the five-year survival rate is among the worst of all cancers.
But there is a promising drug, bevacizumab, which has increased progression-free survival in clinical trials, though its impact on overall survival is uncertain.
Health Canada granted a conditional approval in March 2010 for the drug, sold by pharmaceutical giant Roche as Avastin, to treat GBM when other means have failed. Some provinces have opted to fund the drug, at a cost of about $8,000 per month. Ontario has refused.
Those who want it must pay for it themselves.
Kimm Fletcher, a 41-year-old Milton mother, died earlier this week of the same cancer after a highly public campaign trying to pressure Ontario to cover Avastin to treat GBM. The province does pay for it to treat colorectal cancer. In 2010, Kulchyk underwent brain surgery to remove as much of the cancer as possible, followed by radiation and chemotherapy. He enrolled in a clinical trial involving Avastin, where some participants would receive the drug and others, a placebo. When he had another seizure in July 2012, he had already outlived the median survival rate for GBM — a year — by nine months. The tumour had come back. The Kulchyks were told Bob had received a placebo, rather than Avastin, over the trial. “For almost two years, he received nothing,” said Donna Kulchyk. He enrolled in another trial involving an experimental drug, E7080, but later dropped out due to side effects. There was another surgery, more radiation, more chemotherapy. By March of this year, with his health deteriorating, Kulchyk’s oncologist suggested Avastin. On April 15, Kulchyk had his first treatment. Roche gave him a discount on the drug and his oncologist has him on a lower-than-recom- mended dose to cut costs. Still, the Kulchyks will shell out $2,400 every two weeks, hoping to buy some extra time, some extra quality. “The sad part is, now it reaches the stage for us where we’re in a twotiered medical system in Ontario, which is a shock to a lot of people,” said Kulchyk, now 60. “They’re deciding, if you have the money, you can live. If you don’t have the money, you can’t.” The Kulchyks, for now, can cover it. Others, such as Fletcher, fundraised to buy the drug. “I don’t think they should have to fight, should have to beg,” said Donna Kulchyk. “If this drug was not covered anywhere else in Canada, I would come to terms with the fact that I have to give money out. When it’s covered in other provinces, I have a really hard time.” B.C. has covered Avastin for GBM since April 2011, treating 85 patients in the past year with the drug. Manitoba also covers the drug. Saskatchewan ran a three-year program that treated 24 GBM patients with Avastin, said health ministry spokesperson Tyler McMurchy. “The program was ended as the benefits were not being shown in patients in terms of improving length of life and more importantly quality of life,” said McMurchy in an email to the Star. Saskatchewan stopped funding the treatment in March this year.
In Ontario, the Committee to Evaluate Drugs (CED) issues recommendations on whether a drug should be funded. The committee reviewed Avastin for treating GBM in 2010 and 2011. In November 2013, a newly minted expert group, the Ontario Steering Committee of Cancer Drugs, reviewed a third submission seeking public funding for Avastin.
In all three instances, the committee reached the same conclusion.
“CED recommended that this drug not be publicly funded on the basis that this treatment has not been proven to prolong survival, improve quality of life, or provide value for money,” said health ministry spokesperson David Jensen in an email.
For now, for Kulchyk, Avastin seems to be working. A week after his first treatment, he felt better than he had in years. He hopes it will give him some more time, a chance to see his kids, in their 20s now, settle down. But it’s going to cost. “When you run out of coins, you’re going to die.”