For Diane Smith, access to the right medicine has been life-changing. Her experience also highlights the difficult reality faced by New Zealanders when recommended treatments are not publicly funded.
In January 2022, Canterbury woman Diane Smith was diagnosed with stage 4 oesophageal cancer and told she had around 12 months to live.
Diane underwent 11 rounds of publicly funded chemotherapy, but when the treatment stopped working, she was faced with an incredibly difficult decision: whether to privately fund another treatment option, Keytruda (pembrolizumab).
Keytruda is an immunotherapy used to treat advanced oesophageal cancer. It is publicly funded for this indication in countries including Australia, the United Kingdom, France, Germany, Spain and Canada, but is not currently publicly funded for oesophageal cancer in New Zealand.
Diane decided to self-fund.
More than three years later, she is clinically symptom-free.
Her experience is one of the stories at the heart of Forbidden Pharmacy, a campaign created by 17 New Zealand patient organisations, including Gut Cancer Foundation, to highlight gaps in access to medicines in Aotearoa.
The financial reality of accessing treatment
For Diane, being able to access Keytruda came with a significant financial burden.
The indicative self-funded cost of Keytruda for oesophageal cancer is around $10,000 every three weeks, depending on an individual patient's circumstances. Even after Diane reached the manufacturer's funding cap, she continues to face approximately $19,000 each year in private infusion and administration costs.
It is a reality Diane says many people do not fully understand until they find themselves facing a serious diagnosis.
“Until you were sick, New Zealanders did not understand what was publicly funded.”
For patients and whānau, having to privately fund treatment can mean drawing on savings, fundraising, seeking support from family and friends, or facing the possibility that a treatment may simply be financially out of reach.
Diane has also spoken about the additional burden of having to advocate for treatment while already navigating cancer and its impact on everyday life.
Her experience puts a human face to a much wider issue being highlighted through Forbidden Pharmacy.
Thank you, Diane
We are incredibly grateful to longtime GCF supporter, Diane for generously sharing such a personal part of her life through the Forbidden Pharmacy campaign, and previously through Gut Cancer Foundation's oesophageal cancer awareness work.
Stories like Diane's help show what access to medicines can mean - the impact on a person's life, their whānau, their finances and the choices they are forced to make while already dealing with cancer.
By sharing her experience, Diane is helping bring greater visibility to the challenges faced by patients when a treatment exists but is not publicly funded in New Zealand.
The Forbidden Pharmacy open letter
As New Zealand approaches the general election, Forbidden Pharmacy is asking political parties and the next Government to address access to medicines. Our open letter calls for greater funding for Pharmac and a medicines system that provides New Zealanders with more timely access to treatments available in comparable countries.
We encourage you to add your name to the Forbidden Pharmacy open letter: