The breath of death
Mesothelioma is a death sentence. As the law stands, both occupational exposure and accidental exposure should be covered by ACC. So why do dying patients have to dredge years of memory to try to pinpoint where and when they might have been exposed? Nikki Macdonald reports.
It was supposed to be a routine GP visit for a repeat prescription. The doctor asked Leonie Metcalfe how she’d been. Actually, I’ve been a bit short of breath, the 68-year-old replied.
Her heart rate was up and her blood pressure sky high. One lung sounded ‘‘absolutely crappy’’.
That was July 29, 2020. Five hours later, she was admitted to Waikato Hospital, where she’d been working as a nurse for 38 years. Four litres of fluid were sucked from her right lung and tests revealed she had malignant mesothelioma – a fatal disease caused almost exclusively by inhaling asbestos fibres.
Her retirement plans disappeared in an instant. The doctors gave her maybe 12 months, depending how she responded to chemotherapy.
She’d only been home a few days, trying to digest the ‘‘devastating’’ news, when ACC called. Her GP had filed a compensation claim and they wanted to know how and when she had been exposed to asbestos.
That would have been an easy enough question for the tradies and maintenance workers who are mesothelioma’s most common victims. But Metcalfe was one of the unlucky 1 per cent of ‘‘nonoccupational’’ cases.
She’d only worked as a nurse. There were no construction workers in the family, who might have brought contaminated overalls home. Or childhood hugs with a tradie dad, like Deanna Trevarthen, who died of mesothelioma in 2016.
Trevarthen’s sister-in-law, Angela Calver, fought a five-year battle for ACC compensation, winning in the High Court in 2019. That case set a precedent that mesothelioma caused by accidental exposure outside a workplace should also be covered by ACC.
But ACC still demanded Metcalfe dredge 40 years of memory to identify the likely source.
‘‘That was terrible,’’ she recalls. ‘‘Because I was facing having to have chemo, not knowing how that was going to be. That was what I got brassed off at . . . that initial shock of being asked ‘where have you got it from?’ . . . I would have no idea. It was just a bit overwhelming.’’
Between chemo sessions, she racked her brains. She had sometimes touched the cladding on pipes at Wairoa Hospital. At Waikato Hospital, there had been renovations, blocked off with plastic sheeting, while the nurses worked on the other side.
She tracked down engineers to confirm that buildings contained asbestos. She called lawyer Beatrix Woodhouse, who also took the Trevarthen case, to help her navigate the paperwork.
Twice, ACC indicated it was likely to decline her claim. There was not enough evidence of workplace exposure, they argued.
‘‘It’s been bloody frustrating . . . I feel like you get fobbed off, maybe because you’re female and not working in a tradie job.’’
But then ACC changed its mind. In October, it approved a lump sum compensation and two years of a weekly wage. The relief was huge. In March, Metcalfe retired to enjoy what time she has left. But she shouldn’t have had to waste precious family time fighting, she argues.
‘‘When I retired from work, I was going to be a patient advocate. Little did I know I’d end up being my own advocate.’’
She’s not the only one who has to fight. Court documents record other struggles.
Former Wellingtonian Dianne Welch had her claim declined because she couldn’t prove she breathed in asbestos while building a house in 1980, in Wellington, rather than in 1991, while building a house in Australia, where she now lives. She appealed from hospital, finally winning in the district court.
Sharon Catterall was probably exposed while helping her fireman dad repair cars between 1967 and 1973. She would have sucked up dust from brake linings, which contain asbestos.
But her claim was also declined, on the basis she inhaled the toxic particles before ACC came into existence, in 1974. She also appealed to the district court, and won.
In 2020, even after the Trevarthen decision theoretically extended cover to accidental exposure outside the workplace, ACC declined eight mesothelioma claims.
ACC chief clinical officer John Robson says claims are declined if the mesothelioma cannot be linked to asbestos exposure, or if the exposure happened overseas. Some claims are also lodged before the disease is confirmed, so are rejected if there is no definitive mesothelioma diagnosis. And cover for accidental exposure only extends back to 1974.
Robson says ACC recognised the seriousness of Metcalfe’s condition and worked ‘‘at pace’’ to get external advice. ‘‘ACC does not provide presumptive cover for mesothelioma claims. This means that to accept the claim we have to confirm both the diagnosis and the nature of the exposure.’’
But Metcalfe wants the rules changed, so a simple diagnosis unlocks compensation.
From wonder to worry
Strong, stable and a great insulator, asbestos was once heralded as a wonder material.
In New Zealand, asbestos imports began in the late 1930s and peaked in
1974. The mineral was briefly mined in Takaka in the 1950s. From the late
1930s, factories in Auckland and Christchurch mixed it with cement to make building products.
It was used in homes from 1940-90, for everything from roofing, floor tiles and wall cladding to spray-on texture for decorative ceilings.
Over the decades, more than
200,000 tons of asbestos were imported. Much remains, in our buildings, homes and machinery insulation.
Its legacy also lingers in hospitals and cemeteries. Every year, about
100 unlucky Kiwis are diagnosed with mesothelioma. That number has inched up from 52 in 1996, as the disease can lie dormant for decades before attacking the lungs.
The majority of asbestos-related disease – 99 per cent of all cases between 1992-2012 – was caused by inhaling asbestos on the job. Worst off were blokes in the building trades.
Asbestosis and asbestos-related lung cancer are caused by prolonged or heavy exposure, but mesothelioma can be triggered by much lower levels. While the risk from a single, low-level exposure is considered extremely low, no-one knows just how much is too much.
A 2015 report by then Chief Science Adviser Peter Gluckman found deteriorating asbestoscontaining materials ‘‘represent a potential public health issue for the future’’. There had already been mesothelioma cases in schoolteachers and maintenance workers in public buildings.
Gluckman found New Zealand had been slow to deal with the hazard.
In 2010, former Wellington principal Peter Kohing pleaded for all schools to be made asbestos-free, after he contracted mesothelioma from inhaling asbestos fibres at two schools he worked at.
Metcalfe knows of at least one other nurse who has mesothelioma after being exposed at work, and fears their cases are just the beginning.
A 2020 stocktake of hospitals found 230 buildings at medium risk of containing asbestos and 117 considered at high risk. Another 372 buildings had not even been assessed.
ACC does not expect a significant increase in mesothelioma claims, but says anyone worried about their exposure should talk to their GP.
David McBride, Otago University associate professor of occupational and environmental medicine, says there’s no knowing how many Kiwis might be in danger of developing mesothelioma, outside those who worked in known risky jobs.
Risk depends on the kind of asbestos, and the level and duration of exposure. The blue and brown asbestos (crocidolite and amosite) used in earlier construction are more harmful than the white chrysotile, which is the most common form found in New Zealand.
But there’s also a genetic component. People with a gene called BAP1 are much more likely to succumb to mesothelioma.
Researchers are also investigating whether an asbestoslike fibrous mineral called erionite, that occurs naturally in Auckland, could be causing the disease.
‘‘If you get a high exposure to asbestos, you’re much more likely to get mesothelioma. But you can also get it at the lower levels as well, because of that genetic susceptibility, probably. We haven’t got the whole picture as yet.’’
What about treatment?
For now, Metcalfe is in remission and feeling great. But she knows the disease will return.
When it does, she will have to decide whether to spend $10,000 every three weeks for unfunded immunotherapy Keytruda. She has squirrelled away her payout in case, but it won’t cover the full cost.
‘‘That’s giving it with one hand, and taking it with the other.’’
That makes Angela Calver mad. Having fought to get ACC coverage for her sister-in-law Deanna Trevarthen’s deadly disease, she took the agency on again to retrospectively fund the Keytruda the family paid for.
They couldn’t afford to pay out every three weeks, but managed eight treatments in total. It was transformative. ‘‘It gave her another 10 months of life,’’ Calver says.
‘‘After her third treatment, she was considering going back to work. From a person who couldn’t go from the bed to the toilet, without needing someone to help her, to ‘I’m well enough to go back to work’.’’
ACC refused to fund the treatment, so Calver appealed, and won. She thought she had unlocked Keytruda for everyone.
But ACC says Keytruda funding requests are usually declined, ‘‘due to the current lack of clinical evidence of the efficacy of Keytruda for the treatment of mesothelioma’’.
A 2020 trial found that, while some mesothelioma patients responded well to the drug, it showed no overall survival benefit over chemotherapy.
Any day now, the Court of Appeal will decide whether to overturn Calver’s ‘Hug of Death’ win, which set a precedent for ACC coverage for accidental asbestos exposure. ACC appealed the 2019 High Court decision in November 2020.
If she loses, Calver isn’t sure she can go through the process again. Like Metcalfe, she just wants ACC to cover mesothelioma and Keytruda funding, without the hoop-jumping and stress she’s had to endure.
‘‘I’ve been fighting for this for a long time and it’s tiring, and it’s expensive. It’s cost upwards of $30,000 in lawyer fees. It’s taken me personally around 400 hours. And emotionally, it’s devastating hearing lawyers talk clinically about a life that meant so much to you.
‘‘Can I do it all again, for another five years? I haven’t answered that question yet.
‘‘Why did I do the fight? a) I promised Deanna I would and b) ACC should just do their job as a nofault insurer and should cover people, when this disease hits them, through no fault of their own. It’s the most hideous way to die.’’
‘‘ACC should just do their job as a no-fault insurer ...’’