The Forbidden Pharmacy - a powerful installation calling for political commitment

Imagine being told the medicine you need exists - and it works. It's funded and prescribed every day in countries like Australia and the UK. But because you’re in New Zealand, you can’t afford it.

This is not hypothetical. It's the reality for thousands of New Zealanders right now.

Crucial drugs used in the treatment of rare disorders are among hundreds of others in the Forbidden Pharmacy that remain out of reach for Kiwis due to underfunding.

These are life-extending and life-changing medicines for everyday people fighting cancers, rare disorders, and chronic conditions.

We wanted to show what that looks like. So, together with 16 other organisations we built a pharmacy.

The Forbidden Pharmacy opened to politicians and the media on Friday 24th July, and to the public on Saturday, July 25, for one day only; every shelf stocked with medicines that New Zealanders cannot access.

MPs from National, Act, NZ First and Labour, as well as the Minister of Health, came along for a tour of the pharmacy, and spoke with the patient organisations present.

There are currently 27 rare disorder medicines sitting on Pharmac's Options for Investment list - a list of medicines they have approved for funding, but currently unable to fund due to the limited medicines budget.

Flynn Maguire, a 21 year old from Kaitangata lives with an ultra rare inherited retinal disease caused by an RPE65 gene mutation, which leads to progressive blindness. A gene therapy has been developed to target specifically the RPE65 gene mutation, and has proven to improve vision in most patients with significant vision loss, and halt further disease progression.

Access to this one-time treatment would be life-changing for Flynn. He would no longer face a future of progressive vision loss and could plan for a future with more opportunities.

Pharmac has approved this gene therapy for funding, but until the medicines budget increases, Flynn has to wait while his vision deteriorates. He has no way of knowing how long he will have to wait.

2026 is an election year. That means right now, we have a real chance to demand change.

We created the Forbidden Pharmacy with 16 other organisations to call on the future government to unlock these medicines for the people who need them.

Take a stand with us. Show your support by signing an open letter calling on political parties to invest more in medicine.

Thank you for your support.