RACHEL SMALLEY: NZ's Shameful Health Secret

Rachel Smalley, journalist and broadcaster writes for The Common Room:

The Medicine Gap is a storytelling platform and at its heart is social justice – I write stories about everyday New Zealanders who are ill and need access to modern medicines that we don’t fund in this country. The stories are raw and brave and deeply personal.

Pharmac is at the centre of this issue – they have complete power over what drugs we buy and when.

They decide how much money they’ll ask the government for each year, and what drugs they’ll fund. They operate in a silo, and successive governments have left them to their own devices since the mid-90s.

That hasn’t served us well. New Zealand now sits at the bottom of the OECD for access to modern medicines, and there are more than 70 drugs languishing on our waiting list – including some which have been there for many years.

Pharmac is unchecked. There is no oversight of its performance. It’s not audited. There is no modern medicine strategy to guide its thinking, and doesn’t look ahead and plan for the future, and consider the big developments in medical science. It remains incredibly insular. There is no critical appraisal of its performance. And CEOs are also appointed from within. That beds in that culture of apathy.

Givealittle has become New Zealand’s platform for survival. Have a look at that site. You’ll see hundreds of Kiwis fundraising for modern medicines. How is it in New Zealand that we’re asking our friends and neighbours to donate money to help us live? This a wealthy first-world country, for goodness sake.

Pharmac’s greatest failing is in the treatment of cancer. Immunotherapies are modern, targeted cancer drugs that may help your immune system fight tumours and cancer cells. In New Zealand, we fund a handful. As in, literally one handful.

Take bowel cancer, our second biggest cancer killer. There are many highly effective immunotherapies that treat this cancer – and bowel cancer is highly treatable if you get it early. And yet New Zealand doesn’t fund one immunotherapy. Not one. In 25 years, we haven’t funded a single medicine to treat this wretched disease.

And that is just the tip of the iceberg. New Zealand doesn’t fund the modern drugs to treat triple negative breast cancer, kidney cancer, esophageal, pancreatic, bladder cancer, head and neck cancer, the blood cancers, prostate, the bone cancers…the list is long.

And that’s why I began writing stories because New Zealanders don’t know about this – until they know. You only know how desperate the situation is when you fall ill, or someone you love gets sick – or dies. It’s only then that you understand the terrible predicament we’re in. Pharmac has failed to keep up with modern science and the Western world and it’s costing New Zealanders dearly.

If there is one thing Pharmac is good at, it’s negotiating – that’s if you can get them to the table. One Aussie pharmaceutical company told me they’ve been waiting for a meeting for 13 years. They manufacture a drug to treat pancreatic cancer. It’s funded in every other Western nation but not in New Zealand. Here, they can’t even get a meeting.

So what’s the problem? Pharmac uses an outdated and flawed funding methodology. It focuses on cost. It all comes down to the price of the drug. And that’s what’s wrong with its methodology. The rest of the Western world also looks at the cost to society of not funding a drug. Pharmac doesn’t. It just looks at the price tag and moves on.

Now, Cystic Fibrosis New Zealand exposed just how archaic and costly Pharmac’s funding methodology is. They gathered data and revealed the annual cost to our health system of not treating cystic fibrosis was over $116m. And how much was Trikafta? The breakthrough drug to treat this disease? $50 million. So CFNZ said if you fund the drug, it means our health system isn’t performing bilateral lung transplants, and kids aren’t spending up to two months a year in hospital – and so you ease the burden on the health system and you save taxpayers money. It was a no-brainer!

But Pharmac didn’t make that decision proactively – their hand was forced.

Budget, of course, is also an issue. Does Pharmac need an increase in budget? Yep, absolutely. That would help.

But Pharmac also needs new leadership and new governance. For more than two years, I have researched and reported on this entity, and I have come to the realisation that Pharmac has developed a culture whereby it doesn’t believe it answers to anyone.

It is impossible to hold Pharmac to account because they refuse to be interviewed. Worse, OIA’s – Official Information Act requests – they’ve revealed the contempt with which they hold the media, and the hundreds of thousands of dollars they pay to consultants to help them avoid accountability.

The Pharmac Review last year highlighted major failures at both an operational and governance level. Pharmac CEO Sarah Fitt and Pharmac Chair, Steve Maharey have refused to be interviewed about those failings. For months, I’ve requested interviews – but they refuse to speak. Sometimes they don’t even answer my emails. I flew to Wellington this year to get in front of Chris Hipkins, and the Prime Minister publicly confirmed – twice – that it was his expectation that Pharmac would front and be open and transparent with the media.

Still, Pharmac refuses all requests. Not even the Prime Minister can force Pharmac to be accountable and transparent. They answer to no one.

And so, New Zealand, here we are. There is no strategy or solution-focused thinking to consider how we might clear the 70 medicines on our waiting list. There is no plan for how we might get you and I and the people we love, the modern medicines to treat disease when it strikes. And there is no political appetite in government to fix this beast.

In the meantime, New Zealand sits at the bottom of the Western world for access to modern medicines. That is something we should be deeply ashamed of. Medical science has moved on massively, and Pharmac has not moved with it.

And no one wins from that. No one at all.

You judge a society by the way it treats its most vulnerable. And when it comes to providing modern medicines to treat New Zealanders who are sick and need medicines, Pharmac is doing a very, very poor job, indeed.

This presentation appeared at The Common Room. You can watch it here.