Two cancer drugs funded by Pharmac are a welcomed surprise but the model needs to be faster and better funded as NZ lags behind other OECD countries, specialists say.
Photo: 123RF
Under the proposal posted on Pharmac's website late yesterday, three new treatments will be funded from 1 December: lung cancer pills Alecitnib, breast cancer treatment Kadcyla, and relapsing remitting MS drug Ocrevus.
Sufferers and supporters - many of whom have been campaigning for the drugs for years - have been celebrating the decision, but specialists say it is really just business as usual for Pharmac and the funding comes too late for many.
Some have died, while others have mortgaged their homes or spent their savings to get access to the drugs.
Pharmac had declined to be interviewed.
'We're very, very happy about this'
Troy Elliott's wife Tracey was receiving a Kadcyla infusion when the funding was announced yesterday, and it means they are no longer planning to sell their home.
"We had put our house on the market, and we had actually been working with ASB to take the house off the market because they said 'this is wrong' ... now we can officially say our house is off the market," Mr Elliott told First Up.
"It looks like it's for not just first line it's for all patients, and if that's the case this is just phenomenal, it's almost unheard of" - Troy Elliott
"Very happy to have heard ... It's not just for Tracey and I, it's for the hundreds of women in New Zealand that have been fighting for this.
"This drug has proven to work with Tracey, it's halved her cancer count, it has reduced her brain tumours, we're in a situation where this is proven to work. Proven overseas and now we're getting Pharmac to listen.
A rally at Parliament last October calling for funding of two medicines to treat advanced breast cancer. Photo: RNZ / Karen Brown
He said he was sure it would make a huge difference for hundreds of New Zealand families.
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"To fight cancer alone is a really difficult thing for a family but to fight cancer also with a big burden of debt over your head and worrying about that is just something New Zealanders should not have to face.
"It is something that is long overdue but guess what - we just want to scream from the top of the mountains that we're very very happy about this."
That decision came on the same day politicians heard impassioned pleas at Parliament's Health Select Committee for the agency to fund a range of medicines, and calls for the entire funding model to change.
'Our current model isn't serving cancer patients particularly well'
Cancer Society medical director Chris Jackson warned however that the move did not signal a change of pace or attitude for Pharmac.
"This is being characterised by some people as a victory for campaigners, but this is actually Pharmac's very much business as usual ... they've had additional money created by the fact they've got less to spend on other drugs through price reductions and it's really not to do with politics," he told Morning Report host Susie Ferguson.
"New Zealand is characteristically very, very slow to review these drugs and come to a funding decision" - Cancer Society medical director Chris Jackson
He said Pharmac had no clear or transparent process governing its funding decisions, and cancer patients in particular were poorly served.
Cancer Society medical director, Chris Jackson Photo: RNZ / Gareth Thomas
"These things turn up a little bit unexpectedly sometimes.
"Pharmac have got a very conservative investment model whereby they invest in drugs at a later stage than other countries and they take lower risks in terms of their investments than other countries do but people with cancer have less time ... they don't have time to wait."
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Dr Jackson said that delay had a very real, observable human cost.
"We know that the application for Kadcyla ... has been with Pharmac for over two years ... we know that people who have been campaigning for these drugs have missed out, and many have died during the time it's taken for Pharmac to make these decisions.
"We've heard their stories and we've seen their suffering is real, and people are cashing in their KiwiSavers, they're mortgaging their houses or they're forgoing treatment and dying sooner because they're not able to get access to these medicines."
He said many other countries had looked at the problem, and the UK's drug funding agency, called MICE, had a scheme that funded cancer drugs separately, and drugs with less evidence backing them could get temporary interim funding.
"In the UK they come to a yes-no decision within 90 days of application - at least that's the target - and there's no timeframe for Pharmac to follow to secure a good financial deal."
'The important thing is to not just make Pharmac the enemy'
Lung Foundation medical director Chris Atkinson, who is also a cancer care specialist, agreed the new funding was a step in the right direction and that Pharmac had a long way to go.
"It's a little scary what is able to be provided to cancer sufferers and their whānau in New Zealand - we are a long way behind our other OECD colleagues."
"Out of our GDP rations or the taxation that is taken - we're not spending enough on cancer care" - Lung Foundation medical director Chris Atkinson
He said cancer sufferers were facing a kind of toxicity they had never had to deal with before - financial toxicity - because they were having to self-fund costly treatments.
He agreed the UK model could provide a good example for Pharmac to follow, and noted there were other examples from New Zealand's past.
"We did have some agencies in the past - Cancer Control ... got dropped by the National government, they're now talking about a national cancer agency - sounds a bit like what Cancer Control was.
However, he emphasised that the debate should not devolve into blame and infighting.
"This topic that's so important to Kiwis, I don't want to see it belittled by bickering on either side of the House. Let's do something together and actually solve these issues.
"I think the important thing is to not just make Pharmac the enemy. I think they try hard to do the job. It's easy to make the pharmaceutical companies the enemy as well - the truth lies somewhere in the middle."
Health Minister David Clark has signalled the government's Cancer Action Plan will be announced later this month, and Dr Atkinson said the next step was for it to be released so constructive feedback could be incorporated.