Untested drug causes worry
Lori Fry’s screen reader program allows her to listen to the text anywhere she navigates on her computer.
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Lori Fry, the 100 Mile House-based representative on the Canadian Council of the Blind (CCB) is voicing her concern about British Columbia being the only province that’s subsidizing an unapproved drug to treat the leading cause of vision loss in seniors, wet age-related macular degeneration (AMD).
Wet AMD is an eye condition (retinal disorder) that causes severe and rapid loss of central vision. It currently affects 100,000 people in Canada, according to CCB statistics, and every week, 60 more Canadians lose their sight because of the disease.
Fry, who is the vice president of the Yukon/B.C division of CCB, says the national organization is concerned B.C. is funding Avastin, a colon cancer drug, which hasn’t been approved by Health Canada, as a treatment for AMD.
She adds Health Canada has stated Avastin hasn’t been clinically tested long enough to provide enough evidence for them to give the drug their OK to be used as an AMD treatment.
“It’s my understanding that Health Canada issued a warning last December that Avastin can cause infection in the eye.”
The issue resurfaced on Oct. 7 when the Alberta government announced the addition of Lucentis, a groundbreaking treatment for the leading cause of adult-onset blindness, to their provincial health plan.
Unlike B.C., Alberta has rejected the idea of also listing or funding Avastin.
Because of the lack of proper data about Avastin, Fry says, it has not been approved for use in the eye in any other province in the country.
On June 1, 2009, the B.C government approved funding for two drugs to aid in the treatment of AMD, she says, adding Victoria agreed to publicly fund Lucentis and Avastin.
Our (CCB) concern is to speak for the united voice for blind Canadians, Fry explains, and we’re talking to our provincial government because we’re not comfortable with the residents of B.C. being offered a drug (Avastin) that has not been approved by Health Canada.
“We can only wonder if it’s because our patients are OK to be used as guinea pigs. Or perhaps, it’s because Avastin is lower in cost.”
Fry notes that Avastin costs about $300 per treatment, compared to Lucentis which costs about $1500 per treatment.
Prior to June 1, AMD patients had to pay for their treatments out of their own pockets but, now, it’s subsidized by the provincial government.
“We [CCB] have publicly thanked the government for approving the funding of Lucentis because it has been proven to make a significant difference.”
Approved for use in Canada in 2007, Lucentis is the brand name for the drug Ranibizumab which is delivered by injection to the eye every four to six weeks. According to CCB, it is the first clinically proven treatment that has been shown to prevent further vision loss in 95 per cent of people with AMD and, in fact, reverse vision loss for 40 per cent of those treated has occurred.
Fry says the concern is why Avastin is being funded by B.C. when it hasn’t been approved?
Noting the CCB had sent a letter to health ministry asking this very question, Fry says they received a response in the summer, indicating, “It offers patients alternative treatments and it also offers physicians alternative treatment methods.”
While B.C. officially includes funding for both Avastin and Lucentis, CCB claims the program has a built-in financial incentive for doctors to use the cancer drug, Avastin, which has known safety concerns when injected into the eye.
“If I was offered a shot
of something that hasn’t been approved… I wouldn’t want to be messing with any little vision I have left. And that’s what they’re asking people to do.
“However, if the two drugs were both approved and had equally proven benefits, then, of course, it would make complete sense to go with the cheaper one.”
Fry says it comes down to the fact that Canada has high standards and certain governing bodies that Canadians put their faith and trust into.
“We shouldn’t have to question their abilities and expertise. We should have the faith and trust that these bodies will protect us.”
The health ministry’s letter stated there has been clinical testing in other jurisdictions, Fry says, so they must feel that because Avastin has been used around the world for years, it should be OK.
“We’re not comfortable with that because Health Canada states it “doesn’t approve it, we don’t advise it and we don’t think you should use it,” but the provincial government says it’s going to use it and we’re wondering why.”
Fry says she has had patients and their caregivers tell her that when they tell their doctors they don’t want Avastin, the doctor will refer them to another physician because they’re questioning his expertise.
She says this isn’t right and believes patients should have the right to choose a tested and approved treatment.
“I would sure like to know that if I lost my vision, it was due to natural causes and not human error.”
The CCB is urging those concerned about the issue to contact their MLAs, Health Services Minister Kevin Falcon
and Premier Gordon Campbell by visiting the CCB website www.ccbnational.net, to have them ensure that British Columbians with wet AMD are no longer used as guinea pigs.
Fry says she would like to see the provincial government take a second look at the problem.
“There wouldn’t be a problem for the government to step up to the plate and state maybe it made a mistake and it will suspend the use of Avastin for now and take another look at it. That might just move them up in the polls again.”
Fry says she would like to challenge government officials to consider whether they would have an unapproved drug injected into their eyes.
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