Former Northland Age employee Deanna Trevarthen, who is battling pleural mesothelioma (asbestos cancer) and her partner Greg Robertson, who also once worked for the Age, are calling for an overhaul of ACC legislation as they try to raise $200,000 for life-prolonging non-funded treatment.
ACC has told Deanna that because she was not employed in an asbestos-exposed environment, her cover for pleural mesothelioma should be withheld, despite expert medical opinion that the 44-year-old, now living in Auckland, was exposed to the deadly fibres as a child when she was a regular visitor to building sites with her electrician father.
Under the current law anyone exposed to asbestos in their employment is automatically covered, but spouses and children who are exposed through that person are not.
"It's sort of gender inequality," Greg said.
"Given that this disease is seen as a 'man disease' because of the work environment, it's mostly males that are protected by ACC, but their wives, spouses, and in this case, kids, are also exposed."
Deanna, he said, had spent extended periods of time at work with her father from the age of six. The fibres, inhaled into the lungs, can lie dormant in the body for more than 30 years.
Mesothelioma specialist Dr Richard Sullivan believed she was exposed around the age of 10, "during regular visits to building sites with her electrician father or during contact with fibres on his hair and clothes on his return home."
In its 'likely decision advice report' to Deanna on December 21, ACC said cover would probably be declined.
In his decision for the ACC claims department, lead occupational health adviser John Monigatti said 95 per cent of mesothelioma cases were caused by asbestos. Because Deanna had worked in a non-asbestos environment as a sales representative, she may be among the "small percentage of people in whom mesothelioma arises without apparent cause."
Greg said he was furious that ACC had made its decision without talking to Deanna's specialist, although ACC spokeswoman Stephanie Melville said all aspects would be considered before a final decision was made.
"It hasn't been declined yet. The final cover decision is still pending while we investigate fully," she said.
Greg believed ACC's hands were tied by outdated legislation, and he is now calling for an overhaul of the 2001 policy to keep up with medical advances, including new knowledge that minimal exposure to asbestos can do harm.
Meanwhile, Deanna has begun her third round of government-funded chemotherapy. She has three more rounds of chemo before she will be faced with a $65,000 round of Avastin to prolong her life. The couple are also planning other life-extending treatments that will cost a total of $200,000. None of those treatments will be funded.
"If Deanna's dad had mesothelioma ACC would have paid out within four days," Greg said, "but Dee, exposed to the same stuff, gets nothing except $200,000 of medical bills and a battle that currently experts say she can't win."
A givealittle page (givealittle.co.nz/cause/deesday) has been opened to raise funds for Deanna's treatment. As of yesterday it had raised $10,872.