Journalist Rachel Smalley has spent years reporting on the human cost of what drug-buying agency Pharmac will or won’t fund. She made a Privacy Act request about herself to the agency – and what she found provided insight into the minds of Pharmac’s leadership team, the tactics employed by the agency to “spotlight” journalists, and politicised commentary from some of its most senior executives.
In May, I submitted a Privacy Act request to Pharmac seeking “all communications with or about Rachel Smalley”. Following last year’s damning Pharmac Review which made 33 recommendations for change, the drug-procurement agency rejected all of my interview requests. I hoped a request for information under the Privacy Act may explain why.
Several months later, Pharmac emailed me a link to a secure transfer site for large files. It held 274 pages of communications relating to “Rachel Smalley”.
I started scrolling, and then stopped when I saw an email sent by Pharmac’s CEO, Sarah Fitt in July last year.
“Sigh….” she had written in the subject line.
The email included a Twitter link to an editorial I wrote about a group of cancer patients who had become friends. They were self-funding the immunotherapy drugs that were keeping them alive.
“Sigh……” Fitt had written.
The editorial revealed the human impact of Pharmac not procuring particular cancer drugs. Fitt had forwarded the email to two colleagues with the digital equivalent of an eye roll.
For the last three years, I have reported on what I see as Pharmac’s archaic processes and decision-making methodologies, attempting to highlight the human and economic impact of the agency’s outdated approach to drug procurement.
Medical science has made huge progress developing cost-effective drugs to treat disease and disorders, but to me, Pharmac has not progressed with it. Its operating model and objectives were set in the 1990s and, in an observation that should floor anyone in the private sector, Pharmac’s objectives and funding methodology have never been revisited. A quarter of a century has passed and Pharmac is still using the pharmaceutical equivalent of an abacus to choose the drugs it funds.
It would be amusing if it hadn’t had such a devastating impact on the health of New Zealanders. Cancer is one of our greatest failings. Our country has fallen far behind the Western world and we now sit at the bottom of the OECD for access to modern medicines.
In a response to Fitt’s email, Jane Wright, a communications adviser for Pharmac at the time, writes that she considers me an activist – not a journalist.
Fitt agrees and says “the good thing is that she has a terrible time slot and not much of a following”.
At the time, I was working for TodayFM hosting the 5am-6.30am pre-breakfast programme. Fitt didn’t question the accuracy of my editorial, but appeared confident few people would see it.
The release of documents also raises several questions for me about the impartiality of Pharmac’s executive, and its opposition to being questioned or held to account.
Some of the agency’s staff have moved on since I lodged my Privacy Act request, including Peter Alsop. He was Pharmac’s director of engagement and implementation until February this year, but is now Te Whatu Ora’s Chief of Staff, appointed by chief executive Fepulea’I Margie Apa.
Three months before he left Pharmac, in a heavily redacted email, it appears Alsop took exception to my interview on TodayFM with Fiona Tolich from Patient Voice Aotearoa. In the interview, Tolich had called on Pharmac to provide equitable access to medicines for children with rare disorders.
The next day, Alsop sent an email to Pharmac communications adviser Wright.
“… you can hear some shit you really don’t want to hear (sort of like a Smalley (redacted) interview!) That interview yesterday was utterly nauseating.”
Pharmac redacted Tolich’s name, but a second Privacy Act request revealed the full sentence. It read “(sort of like a Smalley-Tolich interview!)”. Tolich had called on Pharmac to prioritise the treatment of children with rare disorders in the same way it prioritised treating children with cancer.
Like Fitt, Alsop is a senior public servant. In a healthy democracy, the public and media should be free to question and challenge the performance of a government and its agencies. It is especially important that Pharmac, which has been afforded extraordinary powers to act as the nation’s judge, jury, and executioner on drug funding - is held to account.
I find Alsop’s language troubling. His use of the term “utterly nauseating” to describe an interview should, in my view, concern Peter Hughes, the State Services Commissioner. Alsop sits at the top of the health service in the office of the CEO of Te Whatu Ora. He is in the engine room of our health system.
Alsop and Fitt weren’t the only public servants to push back on being held to account.
Earlier this year, I wrote an editorial about the culture at Pharmac and my frustrations with Pharmac’s governance and leadership teams.
I was also critical of the mixed messaging coming out of the Beehive. Rob Campbell had been sacked as chairman of Te Whatu Ora for criticising the National Party leader, Christopher Luxon. Steve Maharey, a former Labour minister, had also criticised Luxon in editorials for Stuff and the Herald, but retained his role as Pharmac’s chairman.
I drew a comparison citing Labour’s swift sacking of Campbell, but lamenting what I saw as the Government’s blinkered support for public servants like Fitt who, according to the Pharmac Review, was overseeing a dysfunctional organisation that was a long way from providing fair and equitable outcomes for New Zealanders, operated with a “fortress mentality”, and had an “excessive focus on containing costs” at the expense of patient health.
The editorial attracted the attention of Trevor Simpson, who is on Pharmac’s senior leadership team as Kaituruki Māori. Simpson described my column as a “brutal pitch for the right”.
It’s an odd response from Simpson, in my view. For the record, I voted Labour in 2020. But if the public service is apolitical, why is a Pharmac senior executive concerned that I am working “for the right”?
The 274 pages of communications did provide some insight into the agency’s reluctance to speak to me about the Pharmac Review. The first day I requested an interview, Fitt said she didn’t want to do the breakfast round of “Smalley and RNZ”.
Wright emailed a colleague in the communications team.
“Smalley is going to be mega shitty,” she said.
In another twist, the dump of documents revealed what appears to be a strategy to travel to Auckland to engage with the media and “demask” Fitt as the “bad guy”. The email exchange was in August last year, when I was a pre-breakfast host on the now-defunct TodayFM.
Fitt emailed communications adviser Wright.
Fitt: “Fancy a trip to Auckland with me?”
Wright: “Yes! Absolutely!”
Fitt: “I did wonder if we should go see Rachel Smalley F2F (face to face) but will take your advice on that.”
Wright: “I think we should. Let me ponder a plan … ”
Fitt responds: “Anything is possible although not wild on a 6am studio appearance. Was thinking of a separate meeting off-air with her. Just an idea. If we don’t do her, we could do NZ Herald/Stuff/usual suspects or we could just go up and sit in the Viaduct in the sun.”
Wright: “Yes definitely to all of that. I agree, not a studio interview, more a check in (like we do with the others) but focused on getting her to see the bigger picture, demask you as the bad guy.”
That meeting did take place in Auckland, although it was testy for both sides. Pharmac is afforded considerable power; it decides what drugs to fund, and chooses how much funding it will request from the Government.
I asked Fitt if she always informed the Health Minister of the cost to clear Pharmac’s sizeable waiting list for drugs. (There are currently 114 drug applications on the waiting list.)
“No,” she laughed. “That would be quite a lot of money, Rachel.”
Fitt’s laugh infuriated me. I told her it wasn’t her job to decide if the Government could afford to clear the waiting list, but it was her job to inform the Health Minister of the size of New Zealand’s unmet need for medicines.
Exasperated, I asked Fitt how the Government could fix the issue if she didn’t provide the financial parameters that would define the size of the problem?
There was an awkward silence. I left soon after. From memory, that was the last time we spoke.
Pharmac’s approach to monitoring the media was also laid bare in the Privacy Act release of documents.
Isentia, a media intelligence agency, is commissioned by Pharmac to monitor journalists and in 2022, Wright asked for a “spotlight” to be placed on myself and TodayFM.
In many of Isentia’s media reports, I am listed as Pharmac’s “Leading Detractor”. My commentary was (and possibly still is) monitored across all platforms, and Isentia provides analysis of my criticism and assesses whether it is gaining traction with the public.
Isentia’s analysis considers media sentiment and the “tone” of commentary, and highlights where Pharmac has had favourable media coverage too.
Fitt seems to closely monitor the media herself, and the Privacy Act release reveals many emails where she has taken screenshots of my Twitter posts. Remarkably, it is Fitt who frequently alerts Pharmac’s communications team to my tweets.
Fitt also commissioned an external communications company to begin working on a “plan” when she saw a story about me in New Zealand Woman’s Weekly. Just before I began work as a host on TodayFM, I appeared in a NZWW article promoting my new role.
Fitt flagged it to her communications adviser and advised them to “work on a plan” with external communications consultant David Cormack from Draper Cormack.
She anticipated Pharmac would “ … get a few calls from her and her new chums when they start”.
The Privacy Act didn’t reveal details of the “plan” but Draper Cormack would later provide consultancy support to Pharmac when announcing the drug, Spinraza, would be funded to treat children with spinal muscular atrophy (SMA).
SMA is the biggest genetic killer of children under 2 in New Zealand but because the disorder is considered rare, it falls outside of Pharmac’s funding objectives. Pharmac’s continued refusal to fund Spinraza despite its ability to save infant’s lives and ease long-term suffering and disability, had become a PR issue for the agency.
Pharmac asked Draper Cormack for support to ensure the announcement would be received positively. My criticism of Pharmac’s and its multi-year failure to treat children with the disorder was described as having a “serious bent against Pharmac’s approach to helping those with SMA”.
In September last year, in what is consistent with Draper Cormack’s advice, I received a phone call from Pharmac’s communications team to tell me they would fund a drug to treat (SMA) in children.
My voice broke. I have sat with deeply distraught parents who have pleaded with Pharmac and the Government to fund a drug to treat this horrible disease. One family I interviewed had lost a baby, other parents were trying to support their toddlers as they lost mobility, or could no longer walk or swallow food. Many parents were forced to set alarms in the night to get up and turn their children in their beds. It is a grim disease but Pharmac chose not to prioritise its funding.
The drug has an annual cost of between $500,000 and $1 million. That is not a per-child price. That is the total price. Untreated, SMA was costing impacted families, our health system, and a lot more.
I remember my voice breaking when I took the call as a wave of relief swept over me. Some of the sick children I had written about would now live. I hung up and cried. The Privacy Act release reveals that Pharmac hung up too ... and emailed.
Yes, you win, Pharmac. But as long as your senior leadership team fuels what I can only see as a protectionist and defensive culture, and invests time and energy into blocking the media and protecting a flawed and outdated funding model, it is a tragic reality that vulnerable New Zealanders will always lose.
Reform must come to Pharmac. For the sake of us all.