Malcolm with his wife Wiki who passed away of breast cancer.
OPINION
In the past five years, I’ve had my heart ripped apart more than once. My wife, Wiki, was diagnosed with advanced breast cancer in 2018, and died three and a half years later.
The following year, when I was 46 years old, I was diagnosed with aggressive prostate cancer. I am now a widow, a solo father of three children, and a cancer patient. I am confronted with my own mortality daily, and every time I nervously await the results of a blood test, I also face my deepest fear - that my children will become orphans.
Before Wiki’s diagnosis, I can’t remember the last time I cried. These days, the nights are long and I sometimes cry myself to sleep. The deep sense of loss and grief I feel is felt by many families whom I have met, who have also lost people in circumstances similar to Wiki’s. Like us, they have been forced to beg authorities to fund the drugs that will help them live.
Soon after Wiki’s diagnosis, we were told a drug called Ibrance could help. I didn’t know it at the time, but that was the day I took my first steps on a journey to drive reform at Pharmac. For more than a year, Wiki and I campaigned, rallied support, spoke to politicians and marched on Parliament with other breast cancer patients, urging Pharmac to fund Ibrance.
Finally, two years after Wiki’s diagnosis, Pharmac agreed to fund Ibrance. It couldn’t save Wiki, but many breast cancer sufferers are alive today because of my brave wife’s campaigning.
I continue to advocate for better access to medicines alongside Fiona Tolich, who is a fellow trustee of Patient Voice Aotearoa (PVA). Fiona campaigned for many years for a drug to treat children with spinal muscular atrophy (SMA) and she was ultimately successful but, like me, Fiona has also been forced to defend murky accusations seeded by politicians and senior health officials that we are being paid by pharmaceutical companies.
I can’t tell you how angry that makes me. I was trying to keep my wife alive, and at the same time denying suggestions I was profiting from her terminal diagnosis.
In March this year, and following the poignant first anniversary of Wiki’s death, I sent a request to Pharmac under the Official Information Act. I wanted to dig into where those allegations had come from. I asked Pharmac for all the correspondence that listed my name, and the name of my late wife.
The following month, Pharmac told me my request couldn’t be made under the Official Information Act (OIA). However, I could use the Privacy Act to access the information if I could prove I was the executor of Wiki’s will. Armed with that information, I resubmitted my request. From mid-June to the end of September, batches of documents began to come through. In total, I received 10 batches, totalling over 700 pages.
It took a long time for me to go through all of the emails and at times, I suffered from procrastination. I wasn’t sure what I would find. However, when I sat down and read through everything, it gave me an overwhelming insight into the workings of Pharmac. In my opinion, it is an organisation that is focused solely on preserving its reputation. It is bereft of empathy, concern, or compassion for the patients and the advocates it is supposed to serve.
Last month, in the wake of the damning revelations by journalist, Rachel Smalley, Pharmac issued a statement on behalf of its chairman, Steve Maharey. He said he had received assurances from the agency’s chief executive Sarah Fitt, that “this was an isolated incident and unique situation and that the comments are not reflective of Pharmac’s culture”.
I believe these emails show Maharey is wrong. Smalley’s experience is not an isolated incident, and in my opinion, Pharmac’s culture issues are systemic.
One of the email exchanges revealed in the Privacy Act request dates back to 2020, and relates to a campaign I launched with Fiona Tolich, urging Labour to reform Pharmac and double the agency’s budget.
It was just before the election, and PVA had cheekily secured the URL for Labour’s election slogan “Let’s Keep Moving”. On a shoestring budget, we developed a simple website of the same name, and included a petition that would ultimately attract 100,000 signatures.
The website carried photos of several children who were suffering from rare disorders and chronic illnesses, including Olive and Tama, who both have spinal SMA, a severe genetic disorder and the biggest genetic killer of under-2s in New Zealand.
Among the 700 pages, I came across an email sent by Sarah Fitt to Pharmac’s senior communications advisor at the time, Jane Wright.
Fitt emailed a screenshot of a tweet I had sent promoting the “Let’s Keep Moving” website.
“Some light reading tonight, then,” Wright wrote to Fitt.
The flippancy of that comment is galling. The home page of our website carried images and stories of children with a severe disorder, and Wright referred to it as “light reading”.
Fitt replied to Wright saying: “the title page [of the website] is weird”. Fitt also said she had seen me on the 6 o’clock news that night and I was “not happy at all”.
“When is he ever?” Wright replied.
Again, I am stumped by these comments. I wasn’t happy. How could I be? My wife had terminal cancer and was running out of treatment options.
The following year, in an email between Maharey and Fitt in October, 2021, Maharey was critical of an interview I gave to Stuff, in which I was concerned at the rationing of medicines for Type II diabetics. I wasn’t alone. My criticism was echoed by the Diabetes Foundation Aotearoa, which believed between 50,000 to 60,000 eligible New Zealanders would be denied treatment.
Pharmac pushed back against my concerns in the story, and Maharey congratulated Fitt for doing so. He said it was remarkable that Stuff gave me “air”, and accused Stuff of “sloppy journalism”.
Maharey also engaged with Fitt when I emailed him during the first Covid lockdown, in March 2020. At the time, Wiki was still alive and I was concerned because she, and many other cancer patients, were immunocompromised. We had cashed up our Kiwisaver and were self-funding a $25,000 regime of the chemotherapy drug, Abraxane. Gone were our plans to travel to Tāne Mahuta in the Waipoua Forest, along with other bucket list locations. Like the rest of the immunocompromised community, we couldn’t afford to walk beyond our front gate.
At that stage of the pandemic, many immunocompromised patients feared for their lives. On top of this, a group of women with advanced breast cancer had been flying overseas to access generic medicines to treat their disease and could no longer do so because the borders were closed. If they couldn’t access their medicines, their disease would advance and it would have fatal consequences. Concerned, I reached out to Maharey to request an online meeting.
I received a polite response from him, but he declined the meeting. However, my Privacy Act request revealed something quite different.
Maharey had urged Fitt to give me “something” to “calm the large rumour mill” around me, and said he “was not keen to open up” because anything they said “will be used by whomever”.
It is important to understand that at this stage of the pandemic, fear had gripped many people. The Government was urging people to stay home and save the lives of the immunocompromised and the elderly. I had sought a meeting with Maharey as a representative of one of those communities. In my view, Maharey’s response was one of avoidance and self-protection.
The following year, at 3.30am, on November 26, 2021, Wiki died. We buried her three days later, one day before her 44th birthday. Three days after her funeral, Pharmac’s communications team sent an email to Pharmac’s director Māori, Trevor Simpson. Waatea News wanted to speak to Simpson on issues relating to whether Pharmac was listening to consumers and doing anything to advance Māori health initiatives.
Jane Wright was clearly sceptical of Waatea’s question line and their plans to play a tribute to Wiki.
Wright wrote “Hmmm are you ready for the wiki [sic] material?”.
This may seem innocuous to a casual reader, but to me it is deeply offensive. It is bereft of any comprehension of the loss we were experiencing that week as a whanau. I don’t know what Wright meant by the “wiki material” and I’m not sure I want to. Does Pharmac hold a file on my late wife? The email was sent just days after Wiki died.
In recent times, much has been made of Draper Cormack’s role in Pharmac’s communications. They are external communications consultants who have provided additional support to Pharmac’s communications team. My Privacy Act revealed an email Draper Cormack sent to Pharmac.
They were reviewing recent coverage and said while Stuff’s report into a Cancer Control Agency report carried “low” communications risk and “Sarah [Fitt’s] comments came through nicely,” they said it was important to note that “RNZ does not use our quotes at all”.
Draper Cormack said it was because “the quotes are not human enough” and “we can always do better to sound like humans and not comms departments”.
If there was one moment of lightness in the Privacy Act release, it was an email sent internally between two Pharmac colleagues. They had received a request for information, and then belatedly realised it was from me.
However, there is no humour in the situation we find ourselves in. I, and many other patients, are at a loss to understand why the Board and Fitt remain in their roles.
My heartfelt request to the incoming Minister of Health and Prime Minister is this - please sack the board of Pharmac in a vote of no confidence and do what you can to ensure patients no longer are beholden to the chief executive, Sarah Fitt. The culture is toxic and, in my opinion, Pharmac views patients as an adversary.
Patient Voice Aotearoa has received many emails and calls from patients who are deeply distressed at the revelations that have emerged in recent weeks. Many are from terminally ill cancer patients who don’t have faith or confidence in Pharmac to do the best by them.
Finally, I have one more request of the incoming government. At some point, could we sit around a table and discuss what a well-functioning drug procurement agency could look like for New Zealanders? Let’s do what I have been asking Pharmac to do since Wiki was first diagnosed in 2018. Please, help Kiwis to live.
The 19-year-old disappeared without her wallet or mobile phone.