SCAN 2025 · A New Zealand reading
Among the best in the world
– and still waiting
New Zealanders with neuroendocrine cancer rarely pay for their care, and access to treatments like PRRT is now among the best in the world. But they still wait longer than the rest of the world, and are largely cut off from the trials and newer treatments others reach.
SCAN is the Survey of Challenges in Access to Diagnostics and Treatment for Neuroendocrine Cancer Patients – a global study run by INCA, the International Neuroendocrine Cancer Alliance. This report reads its 2025 results for New Zealand.
Foreword
When you are told you have a cancer most people have never heard of, the first thing you lose is certainty. For many of our people, the road to a name for it takes years, and only a fraction of the more than 400 New Zealanders diagnosed each year find their way to us.
The first SCAN survey, in 2019, gave us a global picture. Back then New Zealand had only just installed its first GaTate scanner – which we funded – and there was still no PRRT here; patients who needed it had to have the means to travel to Australia. We have come a long way since.
For SCAN 2025, thanks to our community of patients and health professionals, we could set New Zealand's experience beside the world's for the first time. Some of it made me proud: our people rarely pay for their treatment, we now have some of the best access to PRRT anywhere, and the care our nurses give is second to none. Some of it is harder to read. We still wait too long, and too many never hear about the trials and newer treatments others take for granted.
These gaps are exactly what our goals are built to close. This is where we stand. Now let us do something with it.
Dr Michelle Sullivan Chief Executive, Neuroendocrine Cancer New Zealand
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How far we've come
The road to here
New Zealand did not always have the care this survey measures. Much of it was won, step by step, by patients and their whānau refusing to accept the gaps. This is the ground SCAN 2025 measures from.
Founded to fill a gap
Neuroendocrine Cancer NZ was started by patient Siobhan Conroy as the Unicorn Foundation, when New Zealand had no dedicated support for people with NET cancer. It was formally established the following year.
New Zealand's first GaTate scanner
We fundraised for and installed the country's first GaTate PET scanner at Mercy Radiology, ending the need to travel to Melbourne just to check whether PRRT could help.
Specialist nurses and peer support
Our first specialist NET nurse was appointed, and free one-to-one support and cuppa catch-ups for patients and whānau began around the country.
The case for PRRT is won
Backed by our evidence and a 2,000-strong community, PHARMAC and the Government committed to publicly fund PRRT in New Zealand.
Faster access while we waited
Our advocacy secured High Cost Treatment Pool funding so the most urgent patients could reach PRRT in Australia without paying their own way.
PRRT arrives in Aotearoa
When COVID closed the Australian border, we helped spearhead an interim national PRRT service in Auckland, set up within weeks. PRRT is now delivered here at home.
In a decade, New Zealand went from no scanner and no PRRT to some of the best treatment access in the world. SCAN 2025 measures what came next.
The big picture
Free to get, but slow – and short on the newest treatments
Care for neuroendocrine cancer in New Zealand comes from one public system. That system does two things at once: it takes the cost off patients, and it leaves them waiting – and going without the newest treatments.
What we get right
- 1 in 3 patients pay nothing at all
- 91% of clinicians say PRRT is free
- Half saw a NET nurse this year
What we need to improve
- 59% of clinicians report treatment delays
- 37% of patients have heard of a clinical trial
- Under half can get precision medicine
The whole survey, one picture
New Zealand against the world, one dot per measure
Every question in the survey, plotted. The dotted line is where New Zealand matches the global average. Above it, we are ahead; below it, behind. The dots furthest from the line are the story.
Each dot is one survey measure. Hover any dot to see its question and the exact figures.
Two clusters stand out. Top-left: where New Zealand runs ahead of the global average – PRRT, surgery, and care that is covered. Bottom-right: where it trails – clinical-trial awareness, and the newer interventional treatments. One system, two different stories.
A note on "the world": the global average spans all 103 countries surveyed, ranging from the highest-income countries to many with lower incomes. Even so, some elements of New Zealand's care stood out, such as access to PRRT. Treat small gaps as roughly level.
The short version
Five things the numbers tell us
Care is free, and that is New Zealand's real strength NZ ahead
91% of clinicians say PRRT is provided free of charge, against 40% globally. Almost every therapy is free at the point of use, and one in three patients pays nothing at all.
But New Zealanders wait NZ behind
Delay is the defining problem on both sides. 59% of clinicians report delays getting a treatment, against 33% globally; patients say the same across every stage of care.
A clinical-trials blind spot NZ behind
Only 37% of patients have heard of NET clinical trials, against 57% globally, and only 43% of clinicians, against 68% globally. The clearest gap in the data, and both groups report it on their own.
PRRT is available here when much of the world cannot get it NZ ahead
80% of patients say PRRT is available in New Zealand, against 61% globally, and 24% are receiving it, against 11% globally. Newer options such as immunotherapy and precision medicine remain thin.
A nurse-led model, and a strong safety net NZ ahead
50% of patients saw a NET clinical nurse specialist in the past year, against 28% globally. Support groups, teams and palliative care are all more available, and free. Decisions are made in partnership.
How to read these numbers. This is a rare cancer and a modest New Zealand sample: 110 patients and 73 clinicians. We report only the large, consistent differences, and we treat them as the experience of the New Zealanders who took part, not as proof about every New Zealander. Where patients and clinicians point the same way, we have more confidence.
At a glance
New Zealand against the world
Every headline measure on one scale: where New Zealand does better for patients than the global average, and where it falls behind. Each bar shows the New Zealand and global figures.
Bar length shows the size of the gap between the New Zealand and global figures. "Ahead" and "behind" are judged by what is better for patients, so more delay counts as behind even though the number is higher.
01 · Access and cost
Care without cost
The most consistent finding in the survey: treatment after treatment, provided free of charge at rates far above the world.
Where a NET patient elsewhere often pays privately, here our public system carries the cost. Our near-zero worries about affordability are the flip side of care being free, not a sign that care is unaffordable.
Almost every treatment is free here, far more often than the rest of the world.
02 · The wait
Free care that you have to wait for
If cost is New Zealand's advantage, time is its price. Delay is the one problem named more often here than anywhere else.
Asked what most needs fixing, New Zealanders do not point to money or information. They point to waiting. And twice as many patients as the world say the most helpful change would be access to treatments they know exist overseas but cannot get here.
New Zealanders wait longer than the world at almost every step of care.
03 · Trials and newer treatments
Behind on research and newer treatments
The clearest shortfall in the survey is knowledge of, and access to, clinical trials, the same way for patients and clinicians.
Fewer New Zealanders have even heard of NET trials, let alone joined one. And while our established therapies are strong, the newer options run thin. It is the trade-off of a small, publicly funded system: solid on the essentials, short on the newer stuff.
On trials and newer treatments, New Zealand sits well below the world.
04 · Support and the care model
A nurse-led model, and a strong safety net
New Zealand's care is built around clinical nurse specialists, teams and support services, and patients feel the benefits of this approach.
Half of patients saw a NET clinical nurse specialist in the past year, nearly double the world. Care decisions are made in partnership far more often than the global norm. New Zealand's nurse-led model helps put patients at the centre of care, and this survey shines a spotlight on this quiet strength of our health system.
Care here is built around nurse specialists, teams and shared decisions.
The diagnostic journey
Diagnosed the long way
New Zealand does not have any accredited NET centre of excellence, and few dedicated NET tumour streams. Diagnosis usually happens through GPs, emergency departments and general hospitals rather than specialist units, so an accurate diagnosis can be slow – much like the rest of the world.
First symptoms
Often vague, and easily mistaken for something common. NETs are the zebra that medicine is trained not to look for first.
The GP
Here the GP suggests the diagnostic test for 28% of patients, against 20% globally: a more GP-led start than most of the world.
A general hospital
Where diagnosis usually happens – 56% of cases, most often involving two to three specialists.
Rarely a specialist NET centre
Just 3% of New Zealanders are diagnosed at a specialist NET centre, against 18% across the world.
Diagnosis
A mean of 4.7 years to a correct diagnosis, about the same as the global 4.5. The wait is similar; the route is New Zealand's own.
Why we trust it
Two witnesses, the same story
The survey asked patients one set of questions, and health professionals a separate but related set on the same topics. Where the two groups give the same answer, it amplifies the message.
Clinical trials
✓ Both well below the world
Free care
✓ Both confirm care is free
A nurse-led model
✓ Both point to nurse-led care
One difference stands out. On delays, clinicians sound the alarm far louder than patients – they report treatment delays 26 points above the world, where patients report 6. Those working in the system feel the wait most.
New Zealand in the world
Where New Zealand sits among the regions
Against every world region, not only the average. New Zealand leads on some things and trails on others.
Plain English
What the terms mean
- Neuroendocrine cancer (NET)
- An uncommon cancer that starts in hormone-making cells. It is often slow-growing and easily mistaken for something else, which is why a diagnosis can take years.
- PRRT
- Peptide receptor radionuclide therapy – a targeted treatment that delivers radiation straight to NET cells. In New Zealand it is publicly funded, at a single national service in Auckland.
- Somatostatin analogues
- Regular injections (octreotide or lanreotide) that slow tumour growth and ease symptoms. Funded by Pharmac for NETs.
- Multidisciplinary team (MDT)
- A group of specialists – surgeons, oncologists, nurses and others – who plan a patient's care together.
- Precision medicine
- Treatment matched to the make-up of a person's own tumour, rather than a one-size-fits-all approach.
- Clinical trial
- A study that tests a new treatment. Taking part can give access to treatments that are not yet widely available.
More terms are in our full glossary.
Method and limitations
How to read this report
SCAN 2025 is the second edition of a global study first run in 2019, run by INCA, carried out through self-completion online questionnaires and reported against the 2019 baseline. This is a New Zealand reading, comparing the New Zealand responses with the global sample on each relevant question.
- Field period
- 4 September to 1 December 2025
- Global sample
- 3,411 participants across 103 countries (2,764 patients and carers; 647 clinicians)
- New Zealand sample
- 110 patients and carers (4% of global respondents); 73 clinicians (11% of global respondents – a high share for a small country)
- Comparison
- New Zealand result against the global average, per question
On the small sample. A rare cancer means a modest New Zealand base. We report only sizeable, consistent differences, and describe them as the experience of the New Zealanders who responded rather than as population-level proof. Findings resting on small sub-groups have been set aside, not headlined.
How sure are we? With 110 patients and 73 clinicians, a single figure carries a margin of roughly ±9 to ±11 points, a little wider for the smaller clinician group. We only headline gaps larger than about 15 points, and treat anything smaller as roughly level.
Who answered.This is an online survey recruited largely through global patient networks, so it leans towards people already connected to advocacy and support – such as those in the Neuroendocrine Cancer NZ community. That may highlight New Zealand's strengths – receiving PRRT, seeing a nurse, shared decisions – more than its gaps.
What "the world" means.The global average spans all 103 countries surveyed, ranging from the highest-income countries to many with lower incomes. Even so, some elements of New Zealand's care stood out, such as access to PRRT.
What it cannot see. The survey is not broken down by ethnicity for any nation, and almost certainly under-represents the experience of first-nations peoples in many countries, including Māori and Pacific New Zealanders. Equity – who waits longest for diagnosis or treatment, and how people outside the main centres can access care – is a gap these numbers cannot show.
With thanks. This report draws on SCAN 2025, run by the International Neuroendocrine Cancer Alliance (INCA). We are grateful to INCA for the survey, for generously sharing the data, and for their ongoing collaboration and friendship.
The full report
Get the full report
This page is the short version. The full report goes deeper on every theme, with the working, the caveats and the source tables.
The full report
Long-form analysis, methodology and the full data tables, as a PDF you can print or share.
Download the full reportWhere you come in
You are not alone in this
If you or someone you love is facing neuroendocrine cancer, we are here: specialist nursing, good information, and a community that understands. These are exactly the gaps this survey lays bare – and the work we do every day.
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