Jess Fulford with her daughter Sofie and husband Karlos. Jess was diagnosed at the age of 17 and got treatment quickly. Photo / Supplied
Every day, cancer patients are being failed by our health system as signs of the deadly disease are ignored or misdiagnosed. As a result, lives are being lost. In a five-day series, health reporter Emma Russell tells the stories of some of the people who have been let down, and looks at what needs to change.
Surviving cancer in New Zealand can be a lottery.
A father has a better chance of beating the deadly disease in Christchurch than if he lived in Wanaka due to the limited resource available in small towns.
A teen is more likely to be fast-tracked through the system than her grandmother due to age.
A person battling aggressive melanoma has access to live-saving drugs like Keytruda, while a lung cancer patient has no option but to pay thousands of dollars for the same drug – but only if they can afford it.
And a Māori woman living in Auckland is less likely to be screened for breast cancer than a Pākehā woman due to cultural and socio-economic barriers.
Health advocates say these "unacceptable" inequalities relating to age, location, cost and ethnicity urgently need ironing out.
Oncologist and Cancer Society of New Zealand medical director Chris Jackson says thousands of Kiwis are dying every year from cancer due to inequalities in health care.
"Frankly that's unacceptable and we need action now."
Lung cancer has the highest death rate with about 1805 New Zealanders dying from the disease each year.
Lung Foundation chief executive Philip Hope said the inequalities of health care in New Zealand are extremely disappointing.
He said many patients he'd been in contact with had to re-mortgage their home or start a Givealittle page to afford life-saving drugs because they aren't publicly funded even though they are for other cancers.
"And then we have patients sent home to die because they can't afford to pay."
Researchers and medical practitioners interviewed emphasised that regional inequalities are prevalent among all cancers and "were not acceptable but more importantly were preventable."
Waiting times vary greatly at each district health board (DHB) with some places having delays of two months and others up to six months.
While there are different reasons for this, one of the big issues was a lack of specialists and resource to keep up with demand.
There are also regional inequalities in the percentage of people presenting to emergency departments (ED) with non-diagnosed bowel cancer.
This was found in a 2019 report, conducted by the Ministry of Health and the National Bowel Cancer Working Group.
University of Auckland professor and colorectal surgeon at Auckland City Hospital Ian Bissett, who led the study, said this rate varied between each DHB from 15 to 35 per cent.
He also found the quality of surgery outcomes varied greatly between DHBs.
The study showed that of 7170 patients who had major surgery for bowel cancer over a three-year period, 4 per cent died within 90 days of the operation.
That death rate was not consistent across DHBs.
In Whanganui 7 per cent of these people died; in Auckland it was 2.2 per cent.
At Waikato the death rate was close to 6 per cent, while in Canterbury it was half that at 3 per cent.
Researchers said national initiatives to improve these outcomes and reduce the rate of emergency surgery are needed to bring down the overall post-surgery deaths in New Zealand.
Disparities in the quality of surgeries around the country aren't the only concern. Today, Health Minister David Clark is opening a summit addressing the shortfalls in radiation therapy.
The Royal Australian and New Zealand College of Radiologists estimate one in two Kiwis diagnosed with cancer would benefit from radiation therapy yet it's only used 37 per cent of the time.
Radiology oncologist Dr Carol Johnson said one of the reasons for this is a patient's address.
"For some patients, particularly those living in rural areas, it can be a four-hour drive to the nearest clinic."
Currently, there are only six public radiation clinics in the country. They are in Auckland, Hamilton, Tauranga, Palmerston North, Wellington, Christchurch and Dunedin.
For father-of-three Mike Heiler staying alive meant packing up his family's life in Wanaka and moving five hours away to Christchurch.
The 42-year-old discovered he had stage four bowel cancer that had spread to his liver, lungs and kidneys and treatment wasn't available in the place he and his wife Turid had planned to grow old in.
The nearest place to get radiation was Dunedin - three hours' drive away.
"We were lucky enough that my work was already based in Christchurch, otherwise moving could have been a lot harder."
He said the decision to move had to be made quickly as time was of the essence.
"Staying in Wanaka wasn't really an option."
For his three young boys it meant disrupting their schooling and moving them to a different primary school.
And for his wife Turid, it meant leaving the speech therapy job she loved.
"Along with all our friends and family down there and the life we were starting to make for ourselves. It was hard."
Originally from Auckland, the family moved to Wanaka in 2012 for the lifestyle and to be closer to Turid's parents.
"We had always planned to retire there but an opportunity to move sooner came up and we jumped at it."
Now living in Christchurch, all his specialist doctors are just a 10-minute drive away and he has better access to diagnostic testing.
He's had 12 rounds of chemo and five weeks of daily radiation therapy – all of which he would not have been able to have in Wanaka. He is also due to have surgery on his liver this month.
The civil engineer said that because of the treatment he's had access to, continuing to work full-time hasn't been an issue so far.
He doesn't know how long he has left to live.
Heiler said given the population growth in the Central Lakes district, not being able to access treatment in the area was a huge problem.
"It should be available there because some people might not have the flexibility to move that we did," Heiler said.
Māori are 20 per cent more likely than non-Māori to get cancer, and nearly twice as likely to die from it. For Pasifika people those rates are similar.
Director of the Cancer and Chronic Conditions research group at University of Otago, Professor Diana Sarfati, said much of that was because fewer Māori and Pacific people were accessing a GP. Cultural communication barriers were also a big issue.
Māori and Pasifika people are over-represented in low socio-economic backgrounds, which means being able to afford a visit to the GP is harder.
It's also more common for Māori and Pasifika people to be living in rural areas and to have kids so finding child support or being able to travel could add to the difficulties, Sarfati said.
Research shows that overall, Māori and Pasifika people are diagnosed, referred and treated later than other ethnicities.
Sarfati said much of that was due to communication barriers as New Zealand's health system is Westernised and the majority of health professionals are not Māori or Pacific people.
Last year a Herald investigation revealed only 55 per cent of Māori women living in Auckland were getting checked for cervical cancer.
Overall, screening for Māori has worsened since 2016 in 17 of 20 health boards.
Dr Debbie Holdsworth, director of funding for Auckland and Waitematā DHBs, said last year there were significant cost barriers contributing to the inequity in Auckland.
Researchers who have studied these ethnic inequities say national leadership to address these barriers is crucial and the first step is collecting more widespread data.
Jess Fulford strongly believes she received better cancer treatment than her grandma because of her age.
The young mum was diagnosed with Non-Hodgkin Lymphoma cancer several years ago, when she was a teenager. Within seven days she had been treated.
Years later, she has a daughter Sofie and husband Karlos she adores, she does triathlons competitively and lives each day like it's her last.
She credits the hospital care she did receive but says her grandma did not receive the same.
The 73-year-old discovered she had bowel cancer around the same time as her granddaughter. She suffered long delays and died seven days after diagnosed.
Director of the Cancer and Chronic Conditions research group at University of Otago, Professor Diana Sarfati, said inequalities by age was a real issue.
Randomised clinical trials tended to exclude many elderly which meant health professionals were more hesitant to recommend the treatment to them.
"Basically elderly who could benefit from treatment aren't getting it because of an absence of evidence."
An Age Concern spokeswoman said some of the biggest issues preventing elderly from getting cancer care were access to transport and the high rates of health insurance.
Research shows New Zealanders over the age of 65 are cancelling their health insurance because the cost is too high.
While everyone in New Zealand is entitled to public health care, the reality is the chances of survival often come down to how much money you have.
Whether it's affording an appointment to see a GP, paying for testing, being covered with private health insurance or having the money to get life-saving treatment – alarming inequalities by cost are prevalent across the country.
Every year the number of Givealittle pages for people needing money to afford life-saving cancer treatment grows.
As of Wednesday, there were 4594 Givealittle pages created by people who needed money for cancer care.
Some, like Auckland father Kurt Brunton campaigned for $1.5 million to get overseas for life-saving treatment that wasn't available in New Zealand.
Brunton managed to raise the money and travel nearly 13,000km to the United States for treatment but died after returning to New Zealand in January.
Others, like 20-year-old Shannon who has ovarian cancer, need money to afford treatment in New Zealand.
Leukaemia and Blood Cancer New Zealand chief executive Peter Fergusson said many patients were prematurely dying because they did not always have access to life-saving medicine.
"Many of these emerging medicines and treatments are being fast-tracked, funded and made available in other OECD countries." But not in New Zealand.
On Tuesday, hundreds of people marched to Parliament calling on the Government to fund 26 life-saving drugs for cancer.
Breast Cancer Aotearoa Coalition chair Libby Burgess said the Government is failing our vulnerable people by not funding the medicines they need.
"These medicines have been proven around the world and are funded in most comparable countries."
When comparing access to funded-drugs in Australia, New Zealanders are severely disadvantaged:
• Between 2011 and 2017, 24 new cancer medicines have been funded in Australia but not New Zealand.
• In New Zealand it takes about 190 days longer to process approvals of new drugs.
One of Labour's pre-election promises was to provide world-class cancer care and a swifter process for funding new treatments.
Prime Minister Jacinda Ardern asked Health Minister David Clark to do more work on an early access scheme. Similar ventures operate overseas. This scheme is a process that aims to give people access to promising new drugs that are not yet licensed.
Pharmac board chairman Steve Maharey has also backed the idea, although he suggested it should be piloted to avoid making costly errors that had emerged overseas.
Lung Foundation chief executive Philip Hope echoed Burgess' comments saying there is no good reason not to fund more effective treatments that keep patients well longer.
"Pharmac often does not request sufficient budget to fund the treatments people need; this means they are intentionally under-resourcing urgent treatments that means life for our most vulnerable."
Getting access to publically funded medicine can also depend on the type of cancer you have.
Pamela Jones and Baden Ngan Kee were both told they were going to die after being diagnosed with terminal cancer.
But, as Ngan Kee began planning for his funeral, Jones was given hope with a "miracle drug" that was funded by Pharmac for melanoma patients.
Ngan Kee, who started picking out his casket with his wife in April last, wasn't entitled to the same life-saving drug Keytruda as it's not funded for lung cancer.
Fortunately, the Auckland father-of-three was able to self-fund the drug - but it was costing him $8000 every three weeks.
Eventually his money will run out but he counts himself one of the lucky ones.
"There are so many people out there who can't afford to pay that and die. At the start of this year I was supporting three people with lung cancer, now two of them are dead."
Jones - who had Keytruda funded for two years to treat her "initially terminal" melanoma cancer - said she couldn't understand why she had the drug funded while people dying from lung cancer had to pay.
Inequalities due to cost are not only common in accessing treatment but also for early detection of the disease.
A 2017 study, conducted by American public policy researcher Amy Downs who was bought to New Zealand to study these inequalities, showed 14 per cent of 19,000 New Zealanders surveyed couldn't afford to pay for their GP.
Downs said ensuring people have access to a GP is one of the most important investments of any health care system.
"Numerous studies have concluded that greater access to primary care is associated with lower mortality rates from all causes including cancer."
Bowel Cancer New Zealand spokeswoman Mary Bradley said New Zealand prides itself on everyone getting a fair go. But this is not the case for cancer care in this country.
"Everyone should have a chance of life – and at present Māori, Pacific people and less wealthy New Zealanders are clearly not having a 'fair go'."
The series
Monday: ACC payouts for misdiagnosed victims
Tuesday: Failings at a primary care level
Wednesday: Lengthy treatment wait times
Friday: What needs to happen?
Three of the whales succumbed on the shore.