Murray and Lisa Denyer are self-funding the drug treatment for Murray's kidney cancer.
Murray and Lisa Denyer are self-funding the drug treatment for Murray's kidney cancer.
Opinion
OPINION
Two cancer patients who fund their own treatments, together with the parents of a woman who lost her life to the disease, write an open letter saying the chief executive and the chairman of Pharmac need to step down after the Rachel Smalley email saga.
To the Chair andBoard of Pharmac,
This open letter comes to you from a community of cancer patients who feel let down by you and your governance of Pharmac.
Many of us feared that Pharmac treats us with indifference, and cares more for its media profile than the health of New Zealanders. The comments published last week that were made by Sarah Fitt, the chief executive of Pharmac, suggest our fears were justified.
It is offensive, unprofessional and incomprehensible that the chief executive of New Zealand’s drug procurement agency would respond to a journalist’s editorial about the suffering of cancer patients by writing “Sigh….”.
Broadcaster Rachel Smalley uncovered hundreds of pages of documents about herself after a Privacy Act request to Pharmac.
It is even more galling to read responses from the State Services Commissioner, the chair of Pharmac, and the Health Minister who described this behaviour as “disappointing”, “unprofessional” or “unacceptable”, without any indication that censure would follow. This suggests they do not believe Pharmac has a systemic culture issue, and there will be no consequences or accountability for this behaviour. It amounts, at best, to a mild telling-off for the CEO.
Cancer patients are calling on Pharmac chief executive Sarah Fitt to resign. Photo / Jason Oxenham
To our cancer community, this feels deeply personal. Some of us have been waiting for medicines to be funded for years. It shows, in our opinion, a sneering contempt towards those who have cancer, and those who advocate for the medicines that we need to live. It calls into serious question the integrity, professionalism, and capability of the board and Pharmac’s CEO.
In our view, Pharmac has been a closed shop with a broken culture for years. Decades of operating in a silo and appointing leaders from within the organisation has allowed this “culture of contempt” to manifest. In internal emails about journalist Rachel Smalley, it shows how Pharmac goes to considerable lengths to silence its critics and avoid accountability.
It is deeply concerning that despite a recent review, Pharmac remains accountable only to itself. It has been held at arm’s length for many years by successive Ministers of Health despite being a publicly funded organisation that exercises enormous power over the lives of New Zealanders. It defies logic that Pharmac continues to operate with such little accountability.
For reasons known only to itself, Pharmac seems determined to preserve the status quo. In our opinion, there is clearly no respect or empathy for people in desperate need of modern treatments who are sick and dying for lack of medicines. There is no aspiration to do better. There is no belief within Pharmac that they can or should be held accountable.
This must change. Today.
Murray and Lisa Denyer are self-funding the drug treatment for Murray's kidney cancer.
None of us chose cancer. Most of us will have our lives cut short, through no fault of our own, or are living vastly compromised lives because of the pressure this disease places on us and our families. Each and every one of us relies on Pharmac to publicly fund cancer medicines to help us live, but most of those treatments are on a waiting list. How is it that New Zealand is now at the bottom of the developed world for access to medicines?
Medical science is constantly evolving and as new treatments come to market, New Zealanders need to be confident that our government officials are working on our behalf to fund modern, cost-effective treatments. It is clear to us this is not the case at Pharmac.
Geoff Dawson and Andrea Hammond are self-funding Geoff's treatment for multiple myeloma after his diagnosis in 2018.
It is devastating to learn, when you are newly diagnosed with cancer, that New Zealand is at the bottom of the OECD for access to medicines. You will either have to pay for your own treatments, move to another country, or go without and have your life shortened by this. Further, we cannot access new treatments by participating in clinical trials because New Zealanders are excluded from many as Pharmac doesn’t fund the very basic standard of care required for the control treatments.
This is the “lived experience” of New Zealand’s cancer community and while we wait patiently and hope our treatments will be funded, Pharmac mocks and evades our champions rather than looking for a solution to get the drugs that will ease our suffering, place us into remission, or buy us quality time with those we love.
Sid Miller and his wife Christine Miller hold a portrait of their daughter Dr Heidi MacRae, who died in November 2022 after battling triple negative breast cancer.
It is our expectation that Pharmac will work hard to fund the most effective treatments using a timely process of assessment and approval, and following global best practice. It is also our expectation that an independent taxpayer-funded government agency, which plays such a critical role in the health of New Zealanders will treat its stakeholders with impartiality and respect. The recent release of internal emails at Pharmac reveals the opposite is true.
In our view, Sarah Fitt’s role as CEO of Pharmac is no longer tenable, and Steve Maharey should stand down as chair of Pharmac.
Pharmac is failing New Zealanders. There can be no confidence in its leadership, and we call on anyone who needs access to modern treatments to stand with us in our call for major reform of Pharmac.
Andrea Hammond and Geoff Dawson, who are self-funding Daratumumab (myeloma)
Lisa and Murray Denyer, who are self-funding Axitinib (stage 4 kidney cancer)
Sid and Christine Miller, parents of the late Dr Heidi MacCrae, who self-funded Keytruda (triple negative breast cancer)
