In Part II of this two-part series, staff writer Thom Barker examines mesothelioma, its prognosis and treatment, victim compensation and the current state of asbestos policy in Canada.
When Ernie Sasyniuk was diagnosed with asbestos-related cancer last year, he and his family were stunned.
“When they came in and said it’s mesothelioma, I looked at Ernie and he looked at me and we said, ‘what’s that?’,” said Ivy, Ernie’s wife.
It is not overly surprising that mesothelioma is not a household word in Saskatchewan. According to Dr. V. Torri, the Sasyniuk’s oncologist, only a handful of cases are diagnosed every year.
“I think in the whole province, maybe about 10 cases a year, something like that,” the doctor said.
That may be on the verge of increasing dramatically according to asbestos.com, the most prominent source of mesothelioma information.
“In 1984, 153 Canadian men were diagnosed with mesothelioma throughout all the country’s provinces,” the website states. “By 2003, 344 cases were reported among men, and 78 among women. Deaths from mesothelioma totaled 404 in 2008, and because of the disease’s latency period of between 20 and 50 years, it is expected that the death rate will not level off until the end of the current decade.”
This is not uncontroversial, however. A 2009 paper by M. Ray and H.L. Kindler entitled “Malignant pleural mesothelioma: an update on biomarkers and treatment,” suggests it may already be in decline.
“The incidence of mesothelioma parallels asbestos usage with a latency of 20 to 40+ years; thus, patient numbers are declining in the United States but rising in the developing world,” the paper states.
Dr. Torri sees it somewhere in between.
“It’s going to peak now, but it’s not going to decrease in incidence because that latency period is there from exposure,” he said.
Whether or not the disease is a coming epidemic or whether it has levelled off or is in decline, it is likely to be endemic in Canada for some time. While asbestos use in Canada was largely discontinued by 1978, existing stockpiles of asbestos-containing products were grandfathered. Even if workers used proper precautions after that time, given the long latency period, at least the current rate of diagnosis is probable for another couple of decades or more.
Also, in Quebec, the use of asbestos has continued unabated (see the last section of this article for more details).
The name of the disease is garnered from the mesothelium, a membrane made of mesothelial cells that lines three of the human body’s cavities, the thoracic cavity (pleura), abdominal cavity (peritoneum) and the heart sac (pericardium). Mesothelioma does occur in all of these, as well as the testicles in rare cases, but the most common, approximately 70 per cent, is within the pleura, which is where Ernie Sasyniuk’s presented, in the lining between his right lung and rib cage.
It is poorly understood how exactly the tiny asbestos crystals promote mesothelial cells from becoming cancerous and dividing uncontrollably, but once the disease does develop, it is very aggressive.
Consequently, diagnosis is difficult. A frequent sign is fluid buildup in the pleura, but this often does not manifest in outward signs. And even if doctors manage to catch it, draining off the fluid and testing it for cancer cells is most often negative and a biopsy is required.
Another problem, Torri explained, is unlike some other types of cancer, such as breast cancer, for example, there is no easily identifiable group to target for screening.
“The biggest problem is we don’t have a good screening modality,” he said.
By the time victims of pleural mesothelioma start to show outward symptoms—the most common of which are shortness of breath, chest pain and persistent cough—it is usually too late.
Prognosis and treatment
“The prognosis is really poor,” Torri said. “We’re really talking about the median survival in these patients is, like, six to 18 months.
When a diagnosis is made, the options are, for the most part, surgery, chemotherapy and radiation treatment or a combination thereof. The patients for which surgery is an option tend to fare somewhat better, but it is a highly select group. Torri explained that the pulmonary difficulties many patients exhibit, simply makes surgery too dangerous.
“There is a lot of mortality associated with the surgery itself,” he said.
And, even with surgery, the prognosis may not be that much better.
“On average people live 20 months to 25 months,” Torri said, although he warned that data is based on a relatively small sample size.
Ernie Sasyniuk was not a good candidate for surgery and chemotherapy failed to curtail the advancement of his cancer.
End of life care
Although advancements are being made toward improved therapies and potentially a cure, currently, mesothelioma is basically a death sentence.
When the time comes that a patient is considered terminal, there are myriad medical, emotional and psychological considerations. That’s where palliative care comes in. In a nutshell, palliative care focuses on relieving and preventing the suffering of patients and their families whether it is in hospital, long-term care facilities, private care facilities or in the home.
“It’s definitely not just the patient, it’s everyone that loves that patient and is involved in their life; it affects everyone that’s around them,” said Charlene Malayney, palliative care coordinator for the central area of the Sunrise Health Region. “Lots of times it’s emotional support, teaching them, explaining symptoms and symptoms management to them. Through home care we can provide nursing care. There’s also the option of having continuing care aides come into the home to provide personal care, meal prep, that type of thing. Anything we can do to make their lives easier. We can’t guarantee quantity of life, but we try to give them the best quality of life that we can.”
Ernie’s family was very grateful for the support. “They stayed with us right ‘til the very end,” Ivy said. “They came morning, noon and night and any time we needed them. They were absolutely wonderful.”
Malayney said when things work out the way they are supposed to, it is a very rewarding profession.
“There are many people out there that being able to die at home is very important to them and for a family to provide that care is often the last gift that they can give their loved one,” she said. “It can be a very unique and beautiful experience. Death in a hospital is, I don’t want to use the word ‘sterile,’ but it’s institutionalized. At home it can be a very peaceful experience and the family gets to spend all the time that they want with the loved one and get the satisfaction of knowing that they were able to take care of them and fulfil their wishes.”
In the United States, litigation in asbestos-related diseases is big business. Some large legal firms deal exclusively with the issue.
Canada, although not generally as litigious as the U.S., also has legal firms that specialize in these cases and the country has seen its fair share of court cases. There are other means, however, for victims and/or their families to access compensation. According to the Canadian Mesothelioma Foundation (CMF), there are currently more than 30 Compensation Trust Funds totalling $35 billion that victims of asbestos-related disease can make claims on.
Most provincial workers’ compensation boards, including Saskatchewan, also recognize mesothelioma and other conditions as occupational diseases and will pay for such things as lost income (including pension and spousal income), personal loss and suffering, at-home care and drug treatment regimes that are not covered by provincial health care programs or private insurance.
CMF warns, however, that victims or their families making claims to WCB will become ineligible to make claims against the trusts and the foundation recommends seeking legal advice as to the best course of action.
The Sasyniuk family is currently working its way through the compensation process, but Ivy’s greater concern is others who may be at risk. “I just think people have to know,” she said. “If you worked with asbestos, get in to your doctor and get tested right now.”
For decades Canada has resisted an all-out ban on asbestos, largely to protect two remaining asbestos mines in Quebec. In fact, as late as 2011, Canada played a leading role in successfully blocking asbestos from being included in the Rotterdam Convention, a United Nations treaty governing toxic materials.
Listing the mineral in the convention would have required Canada to warn recipients of its asbestos exports of the associated health risks. At the time, Joe Oliver, natural resources minister, denied Canada’s role and stuck to the Harper government’s long-standing claim that chrysotile asbestos (the type mined in Quebec) could be safely used under controlled conditions.
Since 2002, the Quebec government has not only maintained its commitment to asbestos mining, but has actually encouraged its use in construction projects in the province.
The two remaining mines closed in 2011, but in June 2012, Premier Jean Charest promised the larger of the two, the Jeffrey Mine in Asbestos, Quebec, $58 million to help it restart. Charest’s Liberals lost the September 2012 election to Pauline Marois and the Parti Quebecois, however, and the new government cancelled the loan signalling the end of the asbestos industry in Canada.
Quebec is also putting to an end the policy of encouraging asbestos use and, following a Radio-Canada exposé in March 2013 of 180 health care facilities in the province known to contain the carcinogenic mineral, the province’s health minister promised to make public a list of all asbestos-containing buildings.
When the Rotterdam Convention was revisited in May 2013, Canada did not oppose the inclusion of asbestos, but seven other countries did. Since the convention operates on consensus rather than by majority, those nations that continue to produce asbestos can export it without any protocol in place to protect their customers.
If an epidemic is coming, it may not be in North America.