6 Jun 2019

'Broken promises and lies, people like me don't matter'

From First Up, 12:30 pm on 6 June 2019

"The wellbeing Budget came out on the day that I had my first treatment in Australia. So on the day that Australia was giving this Kiwi a chance to live longer, New Zealand was saying people like me don't matter," Claudine Johnstone says.

Claudine Johnstone with her daughter

Claudine Johnstone with her daughter Photo: Claudine Johnstone

After being diagnosed with stage-four breast cancer almost two years ago, Ms Johnstone had hoped Pharmac would fund the treatment she needed. She could not could not wait any longer. 

Six weeks ago she uprooted her entire family from Dunedin to Australia where she's now receiving the treatment she previously couldn't afford, for free.

"Broken promises" and "lies" are the words Ms Johnstone uses to describe her disappointment with the Labour government she's previously campaigned for after it failed to meaningfully boost funding to Pharmac in its latest Budget.

"I was devastated," said Ms Johnstone, whose eight-year-old daughter Lucy featured on a Labour campaign advertisement during the last elections.

"David Clark and Jacinda Ardern had all said they were going to improve cancer care and we believed it."

Health Minister David Clark and Prime Minister Jacinda Ardern at the government's response to the mental health inquiry report.

Health Minister David Clark and Prime Minister Jacinda Ardern at the government's response to the mental health inquiry report. Photo: RNZ / Dom Thomas

"I'd had friends who had never voted before who said, 'that's it, I'm enrolling and I'm going to vote' and who messaged me on the day 'I went and voted for you Claudine, I want to give you a chance.' So I feel like I've lied to them too, I've let them down."

Pharmac received just a $10 million increase in annual income over the next four years in the Wellbeing budget but that only results in a 1 percent lift.

Patient Advocacy groups say the funding won't keep up with inflation and they fear that it'll cause Pharmac's ability to buy drugs to decline.

Ms Johnstone said the treatment she needed to stay alive longer, which would have cost her almost $9000 every three weeks, was out of her reach in New Zealand. 

So alongside her husband and five children, she made the move to New South Wales. After successfully proving to the Australian government that the move was permanent, she was able to access the treatment under the healthcare scheme, Medicare.

"My only cost is getting to and from the hospital," she said.

"It's such a huge weight off my mind that I can do this, that I can prolong my life without being a burden financially to the family. That we don't have to make those decisions between whether to have this treatment to give me longer or realistically ... it would be a choice between treatment or eating."

Letter from 8-year-old Lucy Johnstone

Letter from 8-year-old Lucy Johnstone Photo: Claudine Johnstone

If she had stayed in New Zealand, Ms Johnstone said she would have celebrated her last Christmas and last birthday with her family this year. The treatment will not cure her terminal illness but it will give her a few more years with her family.

"To me, this is the difference between my youngest Keziah having a chance at having some real memories with me, not memories of what people have told her or looking at a photo, but her own true memories of who I was as a person," she said.

"And that's the big hope, that this can give my children that time."

Ms Johnstone's five children are between four and 12 years of age, and her eight-year-old daughter Lucy has become a recent advocate for her cause.

"She did a speech at school, she wrote a speech about why I've moved to Australia and she spoke about how it's so mum can have medication to stay alive.

"She talked about how a man called David Clark promised that if he got in government, he would improve cancer care in New Zealand but he lied," Ms Johnstone said.

Now she's pleading with the government to take a serious look at Pharmac which she says is a system that's not working. 

"Please listen for the sake of those people who can't move elsewhere."