Stacey Lory, right, with son Liam, who has spinal muscular atrophy, and Catherine in Napier. They are waiting on Pharmac to fund a treatment for Liam. Photo / Paul Taylor
OPINION
With the interim report of the Pharmac Review Panel due soon, we're going to be hearing a great deal about Pharmac over the next month - and the op-eds have started early.
Matt Nippert's article (NZ Herald, July 29) outlined some of the challenges facing our drug-buying agency, some of its successes, and some of the criticism being levelled at it.
The article correctly highlighted that the review has no mandate to question Pharmac's budget, and little prospect of solving the dilemmas caused by skyrocketing drug prices - especially for modern medicines for rare disorders.
But one aspect of this article really made me angry, and it goes to the very heart of why people living with a rare disorder are so deeply frustrated by both Pharmac and the entire discussion of drug funding.
It's called the Trolley Problem, and here's how Nippert described it on Twitter. "At the edge of Pharmac's funding envelope is an awful Trolley Problem: Do you cure 1000 people of hep C, or arrest the decline of a few dozen children with genetic disorders for a year? The costs are comparable."
The trolley problem is appealing because it sounds logical. Of course we would all choose to save as many people as possible if the question of saving lives was framed to us in this way. But that framing is not only cruel, it's a false dichotomy. There is absolutely no need for us to insist we choose one outcome (curing 1000 people) over another (curing a few dozen), except to satisfy our own ideas about budgets and which people are worth saving.
At the edge of Pharmac’s funding envelope is an awful Trolley Problem: Do you cure 1000 people of hep C, or arrest the decline of a few dozen children with genetic disorders for a year? The costs are comparable.
— Matt Nippert (@MattNippert) July 28, 2021
The Trolley Problem is used here as an excuse for an inequitable system, a way of making us okay with the idea that some people are going to die. It's the same kind of logic that led to suggestions of a herd immunity strategy for Covid in the UK, the same kind of language used by Boris Johnson to excuse the deaths he knew would occur when restrictions were lifted.
Here's a quote from Bryce Wilkinson of the New Zealand Initiative, made in the article, which expresses this idea clearly: "Pharmac has got to look at how to spend its money....That's the reality, you can't save everybody."
This is, quite frankly, a failure of both empathy and imagination, and such sentiment shuts down the opportunity we have to explore other solutions. It's also founded on a deep misconception about what constitutes a rare disorder. By framing this as thousands of lives versus a few dozen, the argument brushes over the fact that at least 6 per cent of the population in New Zealand has a rare disorder, or around 300,000 people. Granted, drug treatments don't actually exist for the vast majority of those people, but given the rate of change in our understanding of the science that won't always be the case.
We need to be thinking about how we sensibly tackle this. Rare disorders are not a fringe issue - not just a few dozen sick kids - but a growing health crisis that strikes to the heart of the way we provide public health in New Zealand. The Trolley Problem, as a concept, gives us licence not to think about it. Instead, it obscures the deeper ethical questions, and possible solutions, to this looming crisis.
I've said before that Pharmac should not be seen as an adversary of those seeking treatment, but as their greatest ally. The article provided good reasons why that should be true. But it is also true that, as it stands, Pharmac is fundamentally ill-equipped to deal with funding medicines for rare illnesses. It's not just a question of funding levels - although improving funding for the agency is crucial - it's a question of funding pathways.
Comparing common diseases with rare ones is an "apples and oranges" situation. We need to create separate funding pathways for rare disorders, with different criteria, that run in parallel to our other drug-buying decisions.
But change currently seems unlikely. As quoted in the article, Minister of Health Andrew Little "...downplayed the prospect of significant change. 'On balance, we have a pretty good system,' Little said. 'It's a good model that has served us well for 30 years.'"
Unless, of course, you have a rare disorder. I would say in reply to Minister Little that it's not the past 30 years that should concern us, but the next 30. A significant change of mindset is required if we are to achieve equitable health outcomes for all New Zealanders.
Let's not use the "Trolley Problem" as an excuse to leave people behind.
• James McGoram is Chair of Rare Disorders NZ.