Following this morning’s appalling revelations on Radio New Zealand that Pharmac is considering abolishing a process by which paediatric oncologists can access unsubsidised medicines for New Zealand children suffering from cancer, Patient Voice Aotearoa is pleading that the Minister of Health immediately intervene and instigate a Royal Commission of Inquiry. (See: https://www.rnz.co.nz/news/in-depth/441649/pharmac-likely-to-end-blanket-funding-for-kids-cancer-drugs).

Pharmac instigated this change in response to a landmark discrimination claim by Patient Voice Aotearoa Trustee and lead SMA advocate Fiona Tolich at the Human Rights Commission. Tolich’s claim was predicated on the fact that children with cancer in New Zealand are afforded special access to all available oncology treatments, whereas children with conditions such as Spinal Muscular Atrophy (SMA) suffer and die because medicines are not funded. Pharmac’s removal of the exemption for children with cancer is evidently a knee jerk reaction to being called out for blatant discrimination.

Chair of Patient Voice Aotearoa, Dr Malcolm Mulholland commented “This is an absolutely horrifying decision that has been made by Pharmac. Every New Zealander should be outraged by this act. The result of this decision could very well result in kids with cancer being deprived of access not only to new medications, but to existing medications that have been funded overseas for some time. The inevitable outcome of such a result is that New Zealand children with cancer are likely to die or die sooner.”

Fiona Tolich, PVA Trustee, the lead claimant against Pharmac at the Human Rights Commission, and a patient afflicted with Spinal Muscular Atrophy (SMA), emphasised “I was very clear from the outset that New Zealand kids with cancer should continue to receive the very best treatment options. The sole purpose of my claim was to highlight the discrimination occurring between Kiwi children with cancer and those with SMA. All children deserve equal consideration and yet, there’s a whole primary school class worth of kids who are essentially being picked to die.”

She continued “If a child with SMA can access treatment, then the likelihood of their lives being cut short diminishes drastically and in fact, many will go on and live a healthy and long life. It is unconscionable that rather than Pharmac addressing the inequity by funding available (and highly rated and prioritised by Pharmac’s own technical team) medicines for children with SMA, they have taken the shocking preference of looking to curtail treatment options for children with cancer so that they cannot be accused of discrimination. Jacinda Ardern wants New Zealand to be the best place in the world to be a child, while allowing a Government agency to condemn yet more children to die.”

Both Mulholland and Tolich met with the Minister of Health Andrew Little to discuss their concerns regarding Pharmac on March 12th 2021. At the meeting, Tolich disclosed to the Minister the threat made by Pharmac’s legal counsel to close the pathway for paediatric oncologists to access unsubsidised medicines for their patients in order to address the inequity that exists between children with cancer and children with SMA. Little appeared shocked, apologised immediately, and Mulholland and Tolich were left with the impression that Pharmac would do no such thing under his watch.

States Tolich “The Minister must now act immediately and instruct Pharmac that he will not tolerate this Government agency that comes directly under his remit, continuing with any consultation or plan to disestablish access pathways for unsubsidised medicines for children with cancer. He must also instruct Pharmac that the only way the inequity can be addressed is by having Pharmac fund either Spinraza or Risdiplam for children with SMA. This is a matter of life and death. Pharmac must be funded to a level whereby discrimination, between all patients, does not occur.

Sadly, this is Pharmac’s third strike in a long line of terrible decisions that have had life and death consequences for New Zealand patients. Last week it was revealed that Pharmac requires some $400 million to fund 73 medicines that are on their “Options for Investment” list. Their own documents reveal that the agency has only ever requested a miniscule increase, if any, for funding over the past five years and appears comfortable with a level of investment that has made New Zealand so low in OECD rankings, that the country no longer features in international comparisons. New Zealand barely scrapes into third world status.

Another strike is the ongoing Lamotrigine drug switch tragedy that is currently before the Chief Coroner. While the Coroner is considering whether or not the drug switch was responsible for the deaths of six New Zealanders with epilepsy, Patient Voice Aotearoa can reveal that they are aware of eleven patients that have possibly died as a result of Pharmac’s actions, while advocates begged the Minister of Health to intervene.

Mulholland observes “The review announced by the Minister into Pharmac does not go far enough. The review has excluded past decisions made by Pharmac, as well as any decisions that have been made around Pharmac’s budget. While we agree that the funding of Pharmac is political, it has very real consequences for the health of New Zealanders. Our questions are around how Pharmac calculates how much funding it requests from the Government? For example, while there has been much focus on Pharmac’s “Options for Investment” list of 73 medicines at a cost of $400 million dollars, there is no discussion of how Pharmac intends to fund the 350 medicines that are currently being processed within Pharmac’s system that will treat 500 applications that are routine in countries vastly less well off than New Zealand. Patient Voice Aotearoa policy adviser, Penny Tucker, has noted that some of the options that the organisation has repeatedly tried to discuss with the Government would actually save money by prioritising treatment and cure instead of debilitating and expensive downstream consequences.

Mulholland concludes “This is not about delivering everything; it’s about merely trying to get closer to the international average. The degree to which we are so callously below average at the moment is a complete anathema to the rest of the world. The Minister needs to announce a Royal Commission of Inquiry into Pharmac now, before more disastrous decisions are made by Pharmac – costing the lives of New Zealanders.”

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