As New Zealand’s election debate focuses on the cost of living, a new public installation is exposing another cost being carried by patients and families across the country: the cost of trying to stay alive, stay well, or keep functioning while waiting for access to medicines they need.
The Forbidden Pharmacy is a public awareness campaign that shows the human impact of New Zealand’s medicines access crisis.
Inside the installation at Auckland’s Shed 10 tomorrow, are life-changing medicines that patients need but still cannot access. Each medicine represents a real illness, a real patient community and a real story about people living with the financial, emotional and physical cost of delayed and denied treatment.
For many New Zealanders, the cost-of-living crisis is measured in rent, mortgages, groceries and power bills. For patients waiting for medicines, it is also measured in hospital visits, private treatment costs, time off work, worsening symptoms, debt, uncertainty and time they may not get back.
Campaign Spokesperson, Tim Edmonds, said the cost of living means something very different when the cost is your health, your independence, your income, or your time.
“Patients are not asking for special treatment. They are asking for timely access to medicines that could improve, extend or save their lives. These medicines exist but remain locked away for most New Zealanders, with access often comparable to countries like Poland, Turkey or Mexico. Patients cannot keep waiting.”
A recent international report outlines sobering stats including patients in New Zealand having the poorest publicly-funded access to modern medicines out of comparable OECD countries and that 95% of modern medicines don’t make to shelves in New Zealand. Over the past decade, 477 modern medicines were launched worldwide with just 24 being funded in New Zealand.
The installation makes that reality visible. Visitors will see medicines physically locked behind doors, reflecting the experience of patients who know treatments exist but cannot access them when they need them.
Judith Ansell, who is living with metastatic HER2-low breast cancer, said that effective treatment options exist but remain out of reach for many New Zealanders. After selling her home shortly before her diagnosis, Judith choose to move in with her daughter instead of purchasing another home to allow funds for vital medicines to spend time with her family. Judith has already spent more than $90,000 on private treatment and is now facing the prospect of funding trastuzumab deruxtecan (Enhertu) herself at an estimated cost of $64,000 for six months.
“Some of the medicines locked away here could change my life. They are available in Australia, South Africa, Scotland and Lithuania but not here in New Zealand. They could be available, and they should be. The financial and emotional toll is becoming unsustainable as my treatment options narrow. I’m calling on political parties and the next government to unlock access to the medicines New Zealanders need,” says Ansell.
The Forbidden Pharmacy - backed by 17 patient organisations - is not calling for politicians to choose individual medicines or override Pharmac’s independence. Instead, it highlights the growing gap between medicines that have been assessed and identified for funding, and the budget available to make them accessible.
“We want to see all political parties commit to providing timely access to life changing medicines in New Zealand. People should not have to fundraise, go into debt, move overseas, or wait while their health gets worse,” said Edmonds.
“This is the literal cost of living crisis for patients: the cost of living without the funded medicines they need but cannot access. Noone should be left behind simply because they get sick.”
New Zealand currently invests 0.4% of its GDP per capita on publicly funded medicines, compared to the OECD average of 1.4%, placing New Zealand among the lowest of developed countries. Consecutive governments have under-invested in medicines relative to other parts of the health system.
The Forbidden Pharmacy invites the public, patient communities, healthcare professionals and political representatives to see what delayed access looks like, hear patient stories, and understand why patients cannot keep waiting.
“We are asking you to help unlock the medicines New Zealand needs. Share your story, join the campaign, and call on politicians to make access to medicines a priority ahead of the next election.” says Edmonds.
For more information, visit www.forbiddenpharmacy.org
