'Go off in a corner and quietly die' - cancer patient feels betrayed

News 11/04/2019

A Kiwi cancer patient ditching the country for Australia says she feels as if the Government has told her to "go off in a corner and quietly die".

The Health Select Committee on Wednesday voted against an inquiry into Pharmac's decision-making processes, despite a 33,000 signature-strong petition calling for funding of drugs like Ibrance, which can significantly extend patients' lives.

Claudine Johnstone told The AM Show on Thursday she's heading to Australia, where the drug is funded.

It's not going to save my life. I'm not going to see my four-year-old into adulthood, but Australia and the drugs there will allow me to see her start school

"Aristotle said, 'Show me a child at seven - I'll show you the man.' Australia gives me the chance to see a glimpse of what my child will be as an adult. I won't get to be there as an adult, but I want a glimpse."

She has previously been taking Herceptin, but it's no longer working.

"Most likely if we stay in New Zealand, I've had my last Christmas."

Her husband Stuart said before Labour took power, they were in regular contact with David Clark, who would go on to become Minister of Health.

David gave us personal assurances that things were going to improve in New Zealand. He used to reply to my texts, he used to reply to emails - I don't hear from him anymore.


Cancer Patient Claudia Johnstone, Duncan Garner, David Clark

"We've actually been told that we have hurt David Clark's feelings by speaking out," said Claudine. "I'm offended. I actually feel like the message we got from Labour is I should just go off in a corner and quietly die and not say anything because I'll tarnish their reputation.

"I actually don't care. I'm surprised he acknowledges he has feelings because we're not seeing that."

But I'm not going to go off quietly and die. I'm going to fight for me and others.

Labour MP Louisa Wall, who chairs the Health Select Committee, told The AM Show it would not be appropriate for the committee to hold an inquiry for two reasons. The first is that there already is an inquiry underway into Pharmac by the Maori Affairs Select Committee; the second, that any inquiry by the Health Select Committee wouldn't be independent.

"The Health Select Committee gets advice from the Ministry of Health and Pharmac. The Ministry of Health have advised us they're developing a cancer action plan, and they're looking at an early access scheme. Pharmac have advised us they're doing an internal review, and they will look at transparency, timeliness and an early access scheme.

If we do an inquiry, guess who gets to advise us? The Ministry of Health and Pharmac. It's inappropriate.

Labour MP Louisa Wall

She said the Health Select Committee would recommend an independent inquiry into Pharmac's processes, "which is exactly what the women asked for".

"The fact we don't think the Health Select Committee is independent means that we will advise the House that we think either the Law Commission should undertake a review, or that Treasury should undertake a review with a specific focus on an early-access scheme, and provide options to the Government on how we can better serve people with cancer."

She accused National MP Michael Woodhouse, one of four National MPs on the eight-strong committee, of "circumventing" the usual processes in bringing the vote, which ended in a 4-4 tie - the three Labour and one NZ First MP voting against it.

Wall also criticised National's instruction to Pharmac to fund cancer drug Herceptin when it took power in 2008.

"The entity that makes those decisions is Pharmac. We will not intervene as the previous National Government did and circumventing the process and informing Pharmac that they must provide Herceptin."

We will not do that, that is absolutely right.

Meanwhile, the deaths continue

Claudine Johnstone said 14 members of a Facebook support group for woman battling cancer she's a member of have died since October. Her partner said no one appeared to be taking responsibility.

"Everyone seems to be blaming everyone else… the select committee said they weren't the right body, it had to go back to David Clark again. No one's actually taking responsibility for it. They don't want to make a hard decision.

"It's really difficult to stay calm and to find the words to really describe accurately how we feel, how angry, betrayed and let down we feel."

Ibrance is registered for use, but not subsidised. It costs almost $6000 a month.

Wall said the Ministry of Health and Pharmac are looking at early access schemes for drugs, like they have in Australia and the UK.

Any indication that we are not empathetic or understand what the women are going through, I refute 100 percent…

"I say to that family kia kaha, and I also say the select committee is engaged in a robust process."

She said an indication on whether Pharmac might fund Ibrance should be known by the end of May.

The AM Show / Newshub reporter Dan Satherly