Jane Krsevan has malignant mesothelioma, and is among the ‘third wave’ of victims who were exposed to asbestos. Photo: Michael Clayton-Jones
Two years ago, when she was 45, Jane Krsevan finally discovered the reason for her stabbing back pains and the excess fluid in her lungs. After a frustrating decade of worsening health and conflicting medical opinions, Krsevan's ninth doctor started asking questions about her childhood. When she told him her father was a builder who made insulation boxes for hot water units, he immediately ordered a 3D body scan and a lung biopsy.
The diagnosis was devastating. Krsevan had malignant mesothelioma, an incurable cancer caused by asbestos. Forty years earlier, while she watched her dad cut asbestos cement sheeting in the garage, she was inhaling puffs of ''devil's dust'' containing asbestos fibres up to 200 times thinner than a human hair. So were her parents and three siblings, but it is only she who has developed mesothelioma.
Appallingly unlucky? Yes. But Krsevan is by no means an isolated example. The number of mesothelioma cases is rising in Australia - which already has the highest per capita rate in the world - as the so-called ''third wave'' of victims is diagnosed.
Asbestos was so widely used that new cases of asbestos-related diseases will continue to rise each year until at least 2020. Photo: Peter Braig
First came the miners, many from the deadly Wittenoom blue asbestos mine in Western Australia's Pilbara, which closed in 1967. Next were the people who worked directly with asbestos, in factories, unloading it at the docks, or as builders, plumbers, electricians and carpenters.
Now, the third or ''bystander'' wave is engulfing people such as Krsevan and includes home renovators and women who washed their husband's dust-laden overalls. Australian mountaineer Lincoln Hall, for example, died last year from asbestos exposure decades earlier, when he helped his father build two cubbyhouses using asbestos cement sheets.
He famously survived 12 hours wandering lost near the summit of Mount Everest in 2006, but succumbed to mesothelioma at the age of 56.
The recent furore over shoddy asbestos disposal by NBN contractors working in Telstra's pits is a distressing reminder that the asbestos scourge is nowhere near over. Although Australia stopped mining asbestos in 1983, phased out its use in building products by 1989 and banned it entirely from 2004, the long lag before symptoms develop means new cases will continue to rise each year until at least 2020.
And, as the Telstra debacle also highlights, asbestos is everywhere in Australia's built environment. The miracle fibre - named from the ancient Greek word for ''inextinguishable'' - was heat resistant, cheap, strong and flexible, making it the prefect material for more than 3000 products, including insulation, carpet underlay, brake linings, roof tiles and cement sheeting.
Until recently, government policy has leaned towards letting sleeping dogs lie. Asbestos is only dangerous when its fibres float free, usually from cutting, drilling or sanding it. Now, however, a push is under way to proactively remove asbestos, and to properly record how and when people are exposed to its ghastly needles of death.
On July 1, the new Asbestos Safety and Eradication Agency will begin work on a national strategic plan to remove asbestos from government and commercial buildings, increase asbestos awareness and tackle illegal dumping of the toxic waste.
It will also oversee the National Asbestos Exposure Register, launched on June 7, which allows anyone to record details of incidents where they may have breathed in asbestos fibres.
Barry Robson, president of the Asbestos Diseases Foundation, is relieved that asbestos is back on the political agenda. ''After the campaign against Hardies everything died down, everyone thought it was all over, the victims had won,'' he says, referring to the $4 billion compensation scheme eventually set up in 2007 by James Hardie Industries, which manufactured the bulk of Australia's asbestos products.
Bernie Banton, who spearheaded the campaign against James Hardie's initially inadequate and misleading compensation fund, died of mesothelioma the same year, and asbestos faded from the public spotlight. It briefly returned when James Hardie directors, including then chairwoman Meredith Hellicar, were slapped with corporate bans in 2009 (upheld on appeal to the High Court last year), but then things went quiet. ''Everyone thought the asbestos problem had gone away,'' Robson says. ''We were screaming, 'It's not over, it's still a problem.'''
His biggest worry is the lack of awareness in the general community about just how much asbestos is around and the dangers of disturbing it. Asbestos was widely used in Australian buildings between 1945 and 1980 and, as the increasing numbers of bystander claims show, there is no safe level of exposure to loose asbestos fibres. ''Anything built before 1987, you can be 99 per cent certain it's got some asbestos in it,'' he says.
Robson's own home, a 1970s brick veneer in Sydney's west, is riddled with the stuff. He's vigilant when tradesmen do any work on his house.
But Robson frets about the tens of thousands of DIY home renovators gleefully taking sledgehammers to old bathrooms, sheds and chook houses - often with their children watching and helping.
Indeed, a website about asbestos awareness funded by James Hardie as part of its compensation agreement is directed exclusively at home owners playing ''renovation roulette''.
It was exactly this scenario that lawyer Andrew Dimsey describes as one of his most upsetting cases. His client was a 40-year-old man whose only exposure to asbestos was standing near his father years earlier when he was doing some small home improvements. The father was fine, but his son contracted mesothelioma and died aged 41.
Dimsey, the national head of asbestos litigation at law firm Maurice Blackburn, describes asbestos-induced cancer as a lottery. ''It's like walking across a freeway without looking left or right. You can do it once and get cleaned up, or do it every day for months and be fine.''
When he first started working on asbestos compensation claims 12 years ago, most clients were miners and wharfies aged in their 60s, 70s and 80s. Then came the builders and plumbers. Now, Maurice Blackburn's Victorian practice sees about 50 new mesothelioma clients a year, quadruple the number a decade ago - and the asbestos exposure often has nothing to do with their work.
''The really striking thing over the last couple of years is that the new norm is for people with quite light exposure, the bystanders, the home renovators,'' Dimsey says. ''That includes a sprinkling of clients in their 40s and 50s who were exposed as children.''
Margaret Kent, the head of Slater & Gordon's Melbourne asbestos practice, paints a similar picture. ''I've done this work for 16 years and when I began it was all occupational [exposure],'' she says. ''Now a substantial proportion is home renovators and bystanders.''
She has seen clients who had only a few hours' exposure when they built a rabbit hutch or demolished an outdoor toilet. Other clients simply walked past James Hardie's asbestos products factory in Brooklyn on their way to and from school.
''It's less and less about clients telling me where they worked and more about clients saying, 'I don't know how I was exposed','' Kent says.
For asbestos lawyers such as Kent and Dimsey, the third wave bystander claims are much harder to prove and often require detailed interviews with siblings, neighbours and friends about home renovations completed 30 or 40 years ago.
Doctors, too, face challenges in accurately diagnosing asbestos-induced cancer in patients with no asbestos work history, especially if they are smokers.
Professor Nico van Zandwijk, director of the Asbestos Diseases Research Institute in Sydney, says about 700 people annually are diagnosed with malignant mesothelioma in Australia, a figure that is projected to rise for another 10 or so years. The only known cause of malignant mesothelioma is asbestos exposure.
But the asbestos epidemic is far worse than that. Van Zandwijk says malignant mesothelioma is difficult to recognise and studies have shown that about 10 per cent of cases go undiagnosed.
Further, he says that for every mesothelioma diagnosis, at least two lung cancer patients are also victims of asbestos exposure. While mesothelioma is a distinctive type of cancer mainly affecting the lining of the lungs or stomach, lung cancer looks the same whether it is caused by asbestos or cigarettes.
''It's taken a long time, 20 or 30 years, to be clearer about this,'' van Zandwijk says. ''For the majority of lung cancer patients, the cause is cigarette smoking. But some lung cancer is caused by asbestos.''
On the best figures available, van Zandwijk estimates that about 15,000 Australians have died of malignant mesothelioma since 1950. Add in the hidden victims of lung cancer caused by asbestos exposure, and the death toll is at least 45,000.
Sadly, there are many more deaths to come. Announcing an extra $10.5 million in funding for asbestos protection in the federal budget, Employment and Workplace Relations Minister Bill Shorten noted that up to 40,000 Australians would be diagnosed with asbestos-related disease over the next 20 years.
''There are children not yet born who'll die of an asbestos-related disease,'' he warned.
Astonishingly, despite the overwhelming evidence for more than a century of the dangers of asbestos and the rising death rate from bystander exposure, asbestos is still mined by a handful of countries and widely used for building products in many developing nations, including Vietnam and India. In May, a group of seven countries led by Russia (the world's biggest asbestos producer) blocked a move by the UN's Rotterdam Convention to list chrysotile, or white asbestos, as a hazardous substance.
The five other types of asbestos, including the deadliest blue and brown varieties, are already listed. It was the fourth time an attempt to list chrysotile had failed: on the previous three occasions, Canada opposed the ban but reversed its position after closing its last asbestos mine last year.
Meanwhile, at the Asbestos Diseases Research Institute and elsewhere, scientists are desperately searching for ways to better diagnose and treat asbestos-induced cancers. The ADRI helps oversee a mesothelioma register, established in 2010, where patients are interviewed about how they were exposed to asbestos. It's still early days, but after data from about 300 patients, van Zandwijk says it is clear that the number of cases with no occupational exposure is increasing.
At the start of June, ADRI researchers presented a new treatment for mesothelioma (details of which they would not disclose) to the American Society of Clinical Oncologists' annual meeting in Chicago. Van Zandwijk is wary of generating false hope, but describes the potential treatment as ''a positive note'', with clinical trials scheduled to begin later this year.
For Krsevan, a treatment that is - at best - years away, may well come too late. ''Things are looking OK, hopefully I'm in remission, but I don't know how long that will last,'' says the mother of two. ''I just try not to think about it because otherwise I'd get too depressed.'' When she first developed fluid on her lungs when she was 34, she thought it was payback for smoking, and immediately gave up. Later, when the stabbing pains began in her back, a doctor told her she had probably pulled a muscle. Another doctor put her on high doses of steroids to ease the pain, with little effect.
Since the mesothelioma diagnosis, Krsevan has had chemotherapy, radiotherapy and surgery to remove part of one lung and half her diaphragm. Recently, she spent 17 days in hospital with pneumonia, and has been coughing for the past six months. Just before Christmas, Slater & Gordon finalised a compensation deal with James Hardie, the manufacturer of the asbestos sheeting used by Krsevan's father. The amount is confidential but, as she points out, no amount of money can compensate for the loss of her health.
Instead, she is keen to get across to others the message about the dangers of asbestos. ''I just want people to be careful. Some people think it will never happen to them.''
Lucinda Schmidt is a Melbourne journalist.
Editor's Note: A graphic on the production of asbestos in Australia has been removed because of an error.