Pharmac’s funding of Trikafta is a huge win for people with Cystic Fibrosis. But the media management of the news by Pharmac – a government agency – was strange and concerning.

At 1.59pm on Sunday, my phone pinged with an email from Pharmac, the New Zealand drug-buying government agency. In red and bold font it said at the top: Embargoed until 6:00pm Sunday 4 December.

I knew it was the announcement of funding for Trikafta, a life-extending drug for people with Cystic Fibrosis. I’ve covered the story of Pharmac’s decision-making for years and I’ve also campaigned — as the parent of disabled children — with the advocacy group Patient Voice Aotearoa.

As such, I’d been told fairly early on by campaigners that the announcement was coming but, without confirmation, I couldn’t be sure. We sometimes have these flurries of excitement in the community — a while back there were strong rumours that continuous glucose monitors would be funded. Every other person knew someone whose endocrinologist had said that the announcement would be made “next week”. Continuous glucose monitors were not funded, and the diabetic community and their loved ones are still pushing for this result.

I have certainly criticised Pharmac in the past, but I felt sure they’d let me know about this decision — as I’m a working journalist who has had plenty of contact with them. I’m on the mailing list. They know me. They won’t like me — fair enough — but they’re a government organisation and this is a public health announcement.

They can’t just pick and choose which journalist to give information to.

Right?

I mean… right?

Wrong. As Rachel Smalley, who has worked tirelessly on the campaign to fund medicines, now knows too.

The CEO of Pharmac, Sarah Fitt, issued a ban on information to Today FM and all MediaWorks stations with immediate effect after Smalley released information about the Trikafta decision on Friday. Smalley says she received the information through four sources and, despite being told by Pharmac that no funding was coming, decided to run the story anyway. As a result, Pharmac, a government agency, is planning to withhold information about future public health decisions from one of the biggest media entities in the country. Lloyd Burr has since revealed the exact exchange he had with Pharmac on Friday, which included spokespeople flat out lying to him by saying there would be no funding for Trikafta and, bizarrely, that Today FM would be “about to break the hearts of all those with Cystic Fibrosis by running this story”.

In announcing the media ban, Fitt wrote, “Pharmac will not be providing information, nor interviews, to Today FM, or any other MediaWorks station, until we feel we can trust you again.” What Smalley reported was true, and Today FM didn’t receive embargoed information until Sunday afternoon like everyone else, so the broken trust was that they didn’t take Pharmac at its (false) word.

The press release that seemingly everyone got was sent out on Sunday at 2pm with a Sunday 6pm embargo, timed for the 6pm news bulletins. And the Newshub broadcast was powerful, emotional – and very good for Pharmac. Paddy Gower announced the news in tears (he has supported children and adults with Cystic Fibrosis for a long time), the newsroom applauded, the CEO of Pharmac hugged a patient, and the Pharmac director of operations was all smiles as she said Pharmac’s “calculation” was that patients who use Trikafta “would get 27 more years of good health”. Their calculation took two years to make but there was no question asked of them as to why they took so long to decide to fund Trikafta, despite long knowing that it extends lives.

TVNZ also led its 6pm bulletin with the decision, though did not include the Pharmac CEO and appeared to be operating more closely to the information given in the wide-release announcement, namely that the decision was in the consultation process. 

Did Gower and Newshub receive a different press release to everyone else? The Spinoff asked Newshub when Gower was first informed of the Pharmac funding decision and though they responded, the question wasn’t answered.

Whatever the case, my press release was light on details about the decision so I, along with a number of people with Cystic Fibrosis, turned to Newshub to learn that Trikafta would be free to all patients over six and would be funded from April 2023.

“And the pills won’t cost anything for users!” Gower said.

“They will be completely free,” Williams said.

Good to know, given the press release sent to me simply said “Pharmac seeking feedback on funding Trikafta”. 

“I am thrilled to announce today that we are initiating consultation on the funding of Trikafta for people aged six years and above with cystic fibrosis who meet certain eligibility criteria,” Williams said in the press release I received. The PR also linked to a consultation document again implying none of this was set in stone.

I could not confirm to any of my readers the details as I was still not privy to them.

Pharmac has said the media ban on MediaWorks is because of Friday’s segment. But Smalley has a long history with the agency through her incredible work with The Medicine Gap. I have done a lot of work with Patient Voice Aotearoa. It’s disappointing but sadly not surprising that Pharmac would rather not tell us things.

We are all obviously thrilled by the funding of Trikafta. That isn’t the issue here. The issue is whether it’s ethical or not for a drug-buying agency paid for by taxpayers to pick and choose who to give information to depending on the tone of the coverage and withhold information from those who might be less fawning.

I’ve worked in PR. I still do voluntary PR work where I advise charities and NGOs. I tell them which journalists will be favourable to their stories. I ghost write op-eds for them. This is normal for private companies and charities. It’s also low-stakes to tell a company “this journalist likes cats”.

It’s not, in my opinion, normal for a taxpayer-funded organisation. 

At a time when we have a small portion of the country obsessed with labelling everything as “Big Pharma” we really don’t need our drug buying agency to be hiding information. At a time when trust in journalists has unfairly taken a hit, we don’t need public sector organisations pushing the idea that some journalists can be trusted and some can’t.

Most of all though, we shouldn’t have public health announcements framed as “a good news story” to such an extent that access is taken away if you talk about the lives lost in the fight for funding. Pharmac isn’t a benevolent king bestowing gifts on peasants. It didn’t give trakafta to us. Adults with Cystic Fibrosis and their families, and parents of children with Cystic Fibrosis and their families fought like hell for it. To frame it any other way, or to be cut off for telling the truth, is just plain wrong.

On June 1 this year, Andrew Little said: “The days of the independent republic of Pharmac are over.”

It was in response to a damning independent review of Pharmac. A panel of independent experts made 33 recommendations. Little said the government agreed in principle with most of them.

One was “greater transparency over processes, decision-making and information for the public, consumer groups and people needing accessible information”.