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Monday May 19, 2014

A valiant bid for life-prolonging treatment

Brain cancer victim confronted Ontario government about why Avastin, a drug paid for elsewhere, would not be funded for her

Special to The Globe and Mail

Continued from Page 1

The manufacturer, Hoffmann-La Roche Ltd., has been turned down three times even though Health Canada approved the treatment in 2010. According to corporate relations manager Naziah Lasi-Tejani, the kind of tumour Ms. Fletcher had, called glioblastoma multiforme (GBM) accounts for about 43 per cent of all primary brain cancers. "After initial treatment, the cancer nearly always returns with a very poor prognosis for the patient," Ms. Lasi-Tejani said, adding that the company plans to continue to work to have the drug approved nationwide to help people suffering from the disease.

The drug is covered for brain cancer in British Columbia, Saskatchewan and Manitoba. The Fletchers felt even more frustrated when they learned that Ontario pays for it to treat patients with colon cancer, which has a better prognosis.

In keeping with her can-do approach to life, Ms. Fletcher went to work to raise funds that would buy her more time to create memories for her children. "She was beyond tough," Mr. Fletcher said. "She was a take-charge kind of person. It was in her nature to see what she could do to get things fixed."

The family paid what they could for treatment and over six months raised more than $111,000 on a fundraising website. "Her story hit a chord with a lot of people," Mr. Fletcher said. And it attracted widespread media attention.

In October she met with provincial Health Minister Deb Matthews, saying publicly that just one treatment of Avastin meant that she was able to get out of bed and walk her daughter to school. Ms. Matthews acknowledged that her situation was tragic, but stood by the decision that had been made.

Megan Winkler, director of community engagement for the Brain Tumour Foundation of Canada in London, Ont., said Kimm's story is not unique and that many patients are frustrated when they see a drug turned down in Ontario on the same clinical evidence that allows it to be covered in other provinces. What was different about Ms. Fletcher, though, was her determination to speak out.

"We want to see more equitable access to medication," Ms. Winkler said. "And the only way things change is if the voices are really, really loud."

David Jensen, media relations co-ordinator for the Ministry of Health, responded in an e-mail to questions about the drug approval process.

"The ministry's Committee to Evaluate reviews and considers the drug's clinical value and conducts a thorough assessment of the scientific and clinical evidence contained in the manufacturer's submission, cost effectiveness, patient values, as well as the impact on health services compared to existing treatments."

He said the province has also taken into consideration recommendations issued by the pan-Canadian Oncology Drug Review.

The committee assessed Avastin for brain tumours in 2010 and 2011 and recommended not to fund it "because the treatment has not been proven to prolong survival and the clinical benefit compared to treatment cost is unknown."

The manufacturer's third submission in 2013 was also turned down after an evaluation by the Ontario Steering Committee of Cancer Drugs. "The committee noted that new clinical evidence did not convincingly show that single-agent Avastin improves overall survival or quality of life in patients with recurrent GBM," Mr. Jensen said. "Furthermore, it is uncertain whether this treatment is cost-effective."

After the third application was turned down, Ms. Fletcher's hopes began to fade. "She wasn't really sad or angry," Mr. Fletcher said. "She was more disappointed in the system."

In February she had a visual seizure that made her realize the tumour was winning, and she began to prepare mentally for the end she knew was coming.

The family's last outing was a trip at the end of March to Great Wolf Lodge in Niagara Falls to celebrate Martie's birthday. Ms. Fletcher made it to the water park in a wheelchair.

"Each week her health declined a little more," Mr. Fletcher said. She accepted it knowing that she had fought the best she could.

Ms. Fletcher died peacefully at Ian Anderson House hospice in Oakville on April 27 surrounded by the most important people in her life. She was 41.

"There were all the right people in the room," Mr. Fletcher said, adding that a chance appearance of a deer outside as she passed away brought him a little comfort.

"When she was a Junior Ranger, she had the nickname Fawn," he said.

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