Greg Robertson, whose partner Deanna Trevarthan is fighting pleural mesothelioma (asbestos cancer), is pleased that ACC Minister Nikki Kaye plans to review ACC entitlement legislation, but is pleading for a greater sense of urgency.
Greg and Deanna, both former employees of the Northland Age now living in Auckland, are working hard to raise the money needed for unfunded treatment. As of yesterday a Givealittle page (www.givealittle.co.nz/cause/deesday/) had raised $11,272, and Deanna has had returned to work, but the couple need $200,000.
Ms Kaye said she was aware that 44-year-old Deanna had been declined ACC funding because she had not been employed in an asbestos-related industry. Specialists believe she was exposed to the fibres on regular extended visits to her electrician father's workplace.
The Minister said she could not get involved in individual cases, but she wanted to assure Deanna and others that she was going to look at the ACC law surrounding asbestos exposure.
Greg told the Northland Age that that was good news, but time was of the essence.
"There have been several cases of non-worker mesothelioma in the courts since the 2001 Act, and advances in medical science make the legislation archaic. Keeping the legislation current has been, well, worse than poor," he said.
"Deanna is stoked that it is being addressed though. The legislation is just so wrong, and she is happy that people in the same situation in the future may not have to go through this part of the ordeal. And it is an ordeal that people with mesothelioma should not have to deal with. The cancer itself is more than enough to focus on."
Greg urged Ms Kaye to hasten her review so it could help Deanna, however.
"Malignant pleural mesothelioma is rare, so cases don't pop up every day. I guess my father [the late Les Robertson, who ended his long career in education as principal at Taipa Area School] taught me that no one gets left behind. It's a mantra that has served Kiwis well in world wars and should be a very basic part of Kiwi lives. If we can help someone who is deserving, we have to. It should be a given," he said.
"If legislation can change for the better to help just one Kiwi then it should be fast-tracked. If this is fast-tracked it will make a huge difference to Deanna and her fight."
Deanna was currently not eligible for any sickness benefit because Greg was earning more than $42,000 a year.
"That's crazy. The system is just poorly designed, and doesn't factor in the $200,000 our doctors say we will need to extend Deanna's life and make life more comfortable.
"They told me today that I can't take out my Kiwisaver to give to her because of her being ill, only if it's my sickness. They said I could only apply under hardship. Pretty hard to show bills that haven't come yet, but we know are on the way. Ridiculous."
That left Deanna forced to continue working, although Greg had tried to talk her out of it. Constantly exhausted, in pain and losing weight, she was working three days a week, and struggling.
"In one instance we are counted as a couple and in another we are not. Which is it? Why is the system making it so hard for her to get help? I would say the system is inherently flawed," he said.
"I urge Nikki Kaye to pull finger on this. It shouldn't take months or years. This is pen-tick and cross-out stuff. Move it along. Perhaps they feel that this will blow over. The cases that attract media attention are rare."
He was not going to let that happen though. The couple were enlisting the services of a lawyer who was a specialist with ACC, and had won cases against ACC for mesothelioma victims, on a quid pro quo basis.
"The ridiculousness of all this is that Deanna will win this case. ACC will have to make the payment to her that legislation should have allowed for anyway, but the taxpayer will have to front the additional costs of court proceedings. Crazy stuff," he added.
Ms Kaye said Deanna's situation was heart-breaking for her and her family. She 'very much' felt for her, but ACC had to implement the law, and that was what it had done. She would be looking at ACC entitlement cases within the next three to six months however, and would include asbestos exposure.
"I have had some advice and am aware of the legal issue, and I am going to look at this with regard to the law," she said.
"We know more and more because of medical research, so this would be a case of looking at medical advances and if the law is still fit for purpose ... I'm definitely going to have a look at it."
ACC spokeswoman Stephanie Melville said the decision to withhold cover had been made in accordance with legislation:
"We have contacted Deanna and Greg to fully explain the decision so they have both context and disclosure of the decision-making process. We've also given Deanna a full copy of her file to review."