Amanda Reid (left) with her mother Anita Reid who recently passed after being diagnosed with lung cancer. Photo / Supplied
Coughing up blood was the sign it was already too late for Anita Reid.
The Rotorua woman, a non-smoker, was diagnosed with stage four lung cancer in 2018.
She died last month, with her family by her side.
She had spent tens of thousands of dollars on treatment and protested at Parliament over inequalities in the health system that made her feel like a second-class citizen.
Now her daughter, Amanda Watson, is carrying on her advocacy.
"Mum would want me to do that."
There are other stories like Anita's.
Data from a recently published Te Aho O Te Kahu - Cancer Control Agency report showed 63.3 per cent of people in the Lakes area diagnosed with lung cancer in 2015 died within one year - the worst survival rate in the country.
In the Bay of Plenty District Health Board area, 60.1 per cent of lung cancer patients died in the same timeframe.
Lung cancer experts say there are inequities in the system, especially for Māori.
They are calling for earlier interventions, a targeted lung screening programme, funding for life-extending drugs and mobile CT screening units for isolated areas.
A cough and a heart condition plagued Anita for years, but she realised things were serious while holidaying in Rarotonga.
"She coughed up blood in Rarotonga, and she told my brother when we got back," Amanda said.
"He said, 'you need to get the doctor as soon as possible', and she said, 'I know I've got an appointment'."
Amanda said after her mother was diagnosed, her oncologist tested her for a specific cancer mutation. It was a lucky decision.
"If you can call it luck when you've got lung cancer - because they realised she had this mutation she could go on this targeted drug and we had to pay for that.
"Mum had worked all her life and owned her house but she didn't have huge savings, but at least she did have some.
"We met people who chose to die rather than re-mortgage the house."
The drug was extending Anita's life, but it was costing them close to $10,000 a month so, with Amanda, she started funding petitions and marches to Parliament. The drug is now funded.
Watson said her mum was motivated by wanting to speak for people who were not well enough to make their voices heard.
"There is this inequality. If you have money or you're educated you've got a far better chance because you can afford these drugs or you have the ability to research. Well, not everyone [has that].
"So immediately we are second-class citizens in the healthcare system."
Ross Lawrenson, professor of population health at the University of Waikato, said New Zealand had poor outcomes for lung cancer compared with other developed countries because patients tended to present with advanced disease.
Lawrenson has investigated ways to improve early diagnosis of lung cancer among Māori and rural communities and found access to primary care was key in avoiding late diagnosis and reducing inequities for Māori.
The studies were conducted over three years in the Midland Cancer Region which comprises Waikato, Lakes, Bay of Plenty and Tairawhiti DHBs.
The research found barriers to Māori accessing primary care included the mounting costs of multiple appointments, symptom ambiguity and the importance of trust and understanding between Māori patients and their GPs.
"What became clear is the need for culturally safe care and a workforce that understands the needs of Māori patients and whānau," Lawrenson said.
"Our research also clearly showed the importance of whānau as carers and advocates for Māori lung cancer patients."
Lawrenson said with mortality rates three to four times higher for Māori than non-Māori, intervention was critical.
"If we want to improve outcomes, there needs to be more investment in primary care and I think we need to take a hard look at our systems to ensure there's equal access to care for everyone," he said.
Lung Foundation chief executive Philip Hope said lung cancer kills more people in New Zealand every year than breast, prostate and melanoma cancers combined.
"It is unacceptable that almost 80 per cent of patients diagnosed with lung cancer in New Zealand die in the first 12 months.
"The lack of access to a standard of care treatment is also a key reason patients in New Zealand, including Māori, are dying prematurely."
Hope said despite this, there was no national lung cancer screening programme or funding for treatments including immunotherapy.
"Unfortunately, New Zealand lags along way behind the bulk of OECD countries with its funding of targeted therapies and immunotherapies in the public health system.
"This inequity is unacceptable, and it is causing unprecedented financial toxicity for lung cancer patients and their families, who are being forced to either self-fund their treatment, raise funds, or face premature death."
A targeted lung cancer screening programme at a primary health level and a mobile CT screening unit would ensure those living in isolated parts of New Zealand were not disadvantaged, in his view.
Many Māori do not have a regular GP, and for those that do, the cost of repeated appointments, including the distance to their GP were barriers, Hope said.
Cancer Control Agency chief executive Professor Diana Sarfati agreed the mortality rate of lung cancer patients was unacceptable.
She said smoking cessation was the best strategy for preventing the disease.
She said the agency held a forum this week "brought together clinicians from across the country to discuss the results of the recently released report".
"The lessons from this forum will result in a Lung Quality Improvement Plan, which will help drive improvements and address inequities in the system."
Sarfati said the cancer was a priority and the agency was working with the Ministry of Health and the wider sector to look at what the foundational elements of a screening programme might be.
The two organisations, as well as the Health Research Council, released a proposal for lung cancer research with a funding pool of $6.2 million in February, Sarfati said.
"It is expected this money will help fund research into the feasibility of the screening programme in Aotearoa."
In response to Hope's claims about funding, Pharmac director of operations Lisa Williams said the company's model was the only one of its kind globally and so, therefore, was not directly comparable to other countries.
"While we recognise the challenges faced by patients and their whānau, and their understandable desire to try new treatments, our job is to look at all the evidence and make decisions within our fixed budget that are in the interests of all New Zealanders."
Six new cancer medicines were made available in the last financial year, Williams said.