GUELPH — Shortly after Thanksgiving in 2015, the year Sandra and Andrew Goss moved to Guelph from Owen Sound to be closer to their two sons and grandchildren, Sandra fell ill. At first, her doctors thought it was pleurisy, an inflammation of the membrane outside the lungs. “It’s very painful,” says Sandra, now 74. When her condition didn’t improve, they suspected mesothelioma — and, months later, that suspicion was confirmed. The cancer — which is caused by asbestos or asbestos-like fibres — attacks the lining of internal organs, and lungs are most commonly affected. Life expectancy, on average, is less than a year.
Sandra belongs to two different demographics — older adults and women — that new research suggests are getting the fatal disease in increasing numbers. “That’s a pattern that we saw very clearly here and in some other provinces, but it’s also been seen internationally,” says Paul Demers, director of the Occupational Cancer Research Centre at Ontario Health. This summer, the centre completed a study, Mesothelioma: Epidemiology and Prognosis, comparing cases in British Columbia and Ontario over a 25-year period, from 1993 to 2017. Conducted over 18 months, it looked at more than 4,000 cases in Ontario during that time. (A summary of the report is expected to be posted on the centre’s website by the end of the month.) While the majority of cases are still related to exposure on the job, Demers says, the new trend of rising non-occupational cases is “part of the gradual transition, I think, of moving away from being driven by the very high exposures in the past to having more people being exposed at lower levels but still getting cases.”
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Sandra says the vermiculite insulation that she and Andrew uncovered when they renovated an old house in the mid-1970s was one potential source of her exposure; materials the two jewellery designers used in the early ’70s to make their products was another. Fifty years ago, asbestos, valued for its heat- and fire-resistant properties and durability, was everywhere: in workers’ clothing, window-sealant caulking, talcum powder. It was even in the protective gloves Sandra wore when using a kiln for casting or enamelling. “You think of ceiling tiles and asbestos around pipes,” she says. “But all these products that it was in, and nobody knew.”
The study’s data suggests that, although actual case numbers continue to rise, the per-population rate of contracting the disease has levelled off. But Demers remains concerned about the disease’s future prevalence. That’s because asbestos is still present in many buildings, creating hazards for do-it-yourself home renovators, occupants, and workers in construction, maintenance, remediation, and disposal. “The really high asbestos exposures that people got in workplaces are becoming less common,” he says. “But lower exposures from asbestos that's in buildings where people are living in — that's gradually escaping into the environment — will become more important over time.”
Even low exposure can result in cases, Demers says. And, because asbestos can be hard to spot — “these fibres are microscopic in size,” he points out — people may not know that they have been or are being exposed.
Alec Farquhar, a retired lawyer who coordinates Asbestos Free Canada, a loose-knit coalition of individuals, groups, and labour and health organizations, says that the material’s continued presence, despite Canada’s 2018 ban, is one reason the country needs an ongoing, comprehensive national strategy. “So many things are made of asbestos,” he says. “You might not know where to look.”
Such a strategy could also address gaps in monitoring and support systems. Buildings or locations that have asbestos are identified on such lists as the federal government's inventory of federal buildings that contain asbestos, but there’s no comprehensive registry. "The office towers, the commercial buildings, and the residential building stock have not been properly assessed," says Lee Loftus, a board member for the Canadian Mesothelioma Foundation and an advocate in B.C.’s labour community for asbestos-related issues.
While people who have been exposed on the job have been monitored — by the centre as well as by some programs in other provinces — there is no system to track non-occupational cases. Although the centre’s surveillance systems in Ontario are one-of-a-kind in North America, Demers says, they’re limited to tracking worker groups “We still can’t identify the environmental groups, because we don’t have those kinds of systems in place.”
Marie-Eve Sigouin-Campeau, a spokesperson for Employment and Social Development Canada, notes that the government has banned asbestos and introduced several other initiatives. Employment and Social Development Canada, for instance, amended regulations to limit occupational exposure to airborne asbestos to 0.1 fibre per cubic centimetre in federally regulated workplaces. Several other departments, such as Environment and Climate Change Canada, have also changed regulations to reduce and manage exposures, and made efforts to identify risks and provide information on how to manage exposures and eradication.
Sandy Kinart, a spokesperson for Victims of Chemical Valley, a grassroots advocacy and support group in Sarnia-Lambton, the site of Ontario’s largest cluster of mesothelioma, points out that people unable to link exposure to an insured occupation can’t obtain financial support from resources such Workplace Safety and Insurance Board. Those claims are important because they will help pay for equipment, such as a walker, she explains. “The services that you can get because you have a WSIB claim are of great value to a family, especially because the worker can't work anymore,” she says. A Workplace Safety and Insurance Board spokesperson told TVO.org via email that "for an occupational disease claim to be allowed, there must be evidence that a person’s own workplace exposure contributed to the development of their disease." Cases are assessed on an individual basis.
Farquhar notes that non-occupational cases currently make up only a small proportion of the entire volume of cases and says that those able to prove having had secondary exposure — through washing a partner’s work clothes, for example — may be able to access support from U.S. compensation trust funds for victims set up by former asbestos companies. For those whose illness was brought about through environmental or consumer exposure, he says, civil action is the only recourse for financial support.
Farquhar points to Australia's national strategy, in effect since 2014, and its Asbestos Safety and Eradication Agency, which administers the strategy, as a model that might also work in Canada. In notes for a November 2019 presentation, he suggests that such a strategy could, among other things, identify locations where exposure is a risk, set out plans for management and material removal, introduce protections for workers and the public, and create both a registry of Canadians who have been exposed and a mesothelioma health network to foster research and innovation. “It will be important to highlight the worst current exposure situations, which will often be to vulnerable populations, including First Nations, living or working in older buildings with unmediated asbestos,” he writes. Funding and government programs would ensure that “homeowners in particular should not be left with the responsibility of remediating asbestos entirely at their own expense.”
Loftus says that establishing a system like Australia's would also help coordinate government response. Asbestos-exposure issues can be complicated and often involve multiple levels of government, he notes: “It's a challenge, and it's coordinating with each and every one of them. They all understand the necessity. But the willingness to try to coordinate this stuff seems immense to most of ... the bureaucrats I talk with."
This month, Sandra will be embarking on a trial with an as-yet-unnamed immunotherapy drug to try to slow the progress of the disease. It’s the third therapy she’s tried since 2016. The first two — chemotherapy and a trial treatment with an immunotherapy drug (“The drug that President Jimmy Carter took,” she says) — each worked for a while, then failed.
“It's a strange way to live your life,” she says. “It's not like they say, ‘Okay, we've taken off your breast, and I think you're clean. And in five years, if there's no recurrence, I pretty well think you're cured.’ It's not like that with this, because they have no cure.”
She anticipates that there will be a point at which she will decide not to fight, but, right now, she’s still feeling positive effects from the first immunotherapy trial, which ended earlier this year after her cancer metastasized — she’s walking more and even able to work a little on her jewellery.
“There’s a point at which I may say I’m giving up,” she says. “Right now, I still want to try.”
This is one in a series of stories about issues affecting southwestern Ontario. It's brought to you with the assistance of faculty and students from Western University’s Faculty of Information and Media Studies.
Ontario Hubs are made possible by the Barry and Laurie Green Family Charitable Trust & Goldie Feldman.