A New Zealand Cancer Patient's Fight for Access to Life-Saving Treatment

Jo Neep, a 50-year-old New Zealand woman diagnosed with myeloma cancer, has made the difficult decision to relocate to Australia in order to access a life-prolonging treatment called daratumumab (dara). The drug, which is fully funded in Australia, is not available through New Zealand’s publicly funded healthcare system, leaving patients like Neep with limited options.

Neep, who had been living in Australia and visiting New Zealand regularly before moving to the South Island in 2015, received a stem cell transplant in 2022. Her doctors in New Zealand recommended the use of dara, an immunotherapy drug that has been shown to significantly improve survival rates in patients with multiple myeloma.

According to her doctors, the drug costs $45 per dose in Australia, compared to $10,000 privately in New Zealand. Neep explained that she felt she had no choice but to move overseas, stating, ‘I moved because I wanted life.’ She is one of three New Zealand patients treated by her haematologist in Sydney, with another former New Plymouth resident also returning to Perth to access the drug.

Daratumumab is currently funded in over 45 countries worldwide, and has been on Pharmac’s ‘options for investment’ list for several years, with the drug considered a high priority for inclusion. However, it has not been included in the list of 12 medicines with substantial clinical benefits identified by the Cancer Control Agency (CCA), despite multiple trials showing a four-year improvement in survival when the drug is used in its most effective form.

Dr. Rodger Tiedemann, a consultant haematologist, has expressed strong criticism of the CCA’s analysis, stating that it has ignored 90% of the trials on daratumumab and focused only on a single trial that showed an 11-month survival benefit. He emphasized that the CCA’s approach is not reflective of the drug’s overall impact on patient outcomes.

The CCA has clarified that its analysis is not directly related to funding decisions, but rather aims to identify gaps in access for drugs that meet a minimum threshold of clinical benefit. It also noted that Pharmac’s funding methodology considers a broader range of factors when making decisions.

Health Minister Simeon Brown has stated that the government is ‘focused on putting patients first’ and highlighted a recent $604 million boost to Pharmac’s budget, which has funded 66 new medicines — six of which are for blood cancers. However, none of these are for myeloma, despite the growing number of patients affected by the disease.

Leukaemia and Blood Cancer NZ reports that only 115 patients will benefit from these six new medicines in the first year, leaving thousands of cancer patients without access to potentially life-saving treatments. Neep, who is now in Australia, has expressed frustration with the government’s lack of prioritization of cancer treatment and urged continued advocacy for better access.

This story highlights a growing trend among New Zealand cancer patients who are turning to Australia or private funding to secure treatment for conditions that are not available in their home country. As the demand for innovative and effective cancer treatments continues to rise, the gap between what is available and what is needed is becoming increasingly apparent.

As the debate over access to life-saving drugs continues, patients like Jo Neep remain at the forefront, fighting not just for their own lives, but for the rights of all New Zealanders to receive the care they deserve.