Pacific and Māori leaders say there is a need for community-driven health campaigns to address growing inequities in bowel cancer diagnosis and survival.
Earlier this month, the Government announced the end of a pilot programme that allowed Māori and Pacific people to access bowel cancer screening starting at from age 50, effective 5 December.
Health organisations were informed of this decision, which the Māori Cancer Leadership Network condemned as shocking, citing the disproportionate high bowel cancer death rates among Māori and Pacific communities.
However Tilly Turner, a Māori ward councillor, found the news unsurprising.
"Who's the first one [that] they cut? Us. They're cutting back on all of these things to do with Māori development or Pasifika… so I'm not at all surprised. It's just going to be: keep cutting."
Turner, the Tai Runga Takiwaa Māori Ward Councillor for the Waikato District Council, shared her concerns.
As a bowel cancer survivor, she described how early detection saved her life after she experienced a blackout during a flight that led to her diagnosis in 2013.
"I had no idea that that's what was going on in my body. If I didn't fly they would not have known. I just blacked out on the plane and it happened to be that I had bowel cancer," she said.
"They found it fairly quickly, at a stage where I had to have quite a bit of my intestines cut out. And closer to the bowel. So they took that out and stitched me up, and I've been good since."
Turner encouraged everyone to get tested.
"What we need to do is just make sure that we get out, you know, if you belong to a Hauora of sorts, that you get those tests done, you know?
"Now, because before that education, we didn't even know how to test. I had no idea that that's the way that you could test. And I didn't even know that I was suffering from it until after I was blacking out, and it was just by chance."
Turner had no symptoms.
"There was nothing else other than from a child, I have always experienced quite a bit of constipation throughout my lifetime.
"But that was my norm. And so that was just the way it was with me. And so, nothing different. I didn't see any blood in my faeces or anything, you know, anything like that.
"It was just went up on a plane, blacked out on a plane. I don't know what that was all about."
She said bowel cancer is not often discussed, but as a survivor, she felt it's her responsibility to urge her family to get tested.
"Because I'm a survivor, I see it as my responsibility to make sure my daughters, my family and my community get tested by a certain age."
Despite the programme being cancelled she remained determined.
"It comes down to each local hauora in each region to ensure a campaign. If the government won't do it, we have to."
Turner stressed the importance of community action.
"We've been educated enough to know how important this is. If we want to keep our families safe, this has to be part of our conversations."
Hei Āhuru Mōwai, a national organisation focused on improving cancer care for Māori, described the Government's decision as poorly informed and devastating for whānau.
The 50+ screening pilot in Waikato diagnosed six people with cancer and led to the removal of numerous precancerous polyps.
Without the pilot screening would not have started until age 60, leaving these cancers undetected and reducing survival chances.
CEO of Hei Āhuru Mōwai Gary Thompson called for a pause on the decision, citing it's conflict with current medical evidence and the lack of notice, which left no time to assess it's impact or inform providers and whānau.
"Returning to the 60-year age limit for Māori and Pacific peoples means that the bowel screening programme will increase inequities in bowel cancer incidence, survival and death rates between Māori and non-Māori," he warned.
"It will harm Māori and Pacific peoples and worsen the 7-8-year life expectancy gap."
Doctor Rawiri McKree Jansen explained that most Māori diagnosed with bowel cancer were under the age of 60, compared to just under a third of non-Māori.
"Bowel screening detects small, potentially curable cancers and prevents cancer by removing precancerous polyps.
"Both Māori and non-Māori have a similar chance of getting bowel cancer, but over half of Māori who get bowel cancer are diagnosed before the age of 60 years (58 percent in females and 52 percent in males).
"This is compared to just under a third for non-Māori (27 percent in females and 29 percent in males).
"For non-Māori, three-quarters of people are diagnosed over the age of 60. Keeping bowel screening available to Māori and Pacific peoples from age 50 would make the national bowel screening programme fair."
Additionally, Māori bowel cancer rates were on the rise, while non-Māori rates were decreasing.
CEO of Bowel Cancer NZ Peter Huskinson expressed his disbelief at the abrupt cancellation of the programme, especially without a formal statement in the House.
"This decision will mean unnecessary suffering and deaths among Māori and Pacific communities - deaths that could have been prevented with proper screening at the right age," he said.
Medical advisor for Bowel Cancer NZ professor Sue Crengle said, "More Māori and Pasifika bowel cancer is diagnosed before age 60 years.
"As a result, these groups had less opportunity to benefit from bowel cancer screening than other ethnic groups.
"Starting screening for Māori and Pasifika people at age 50 years mean't the benefit from the programme was equal across all ethnic groups. It would be incredibly disappointing if this has been stopped."
Turner stressed the importance of empowerment and community action.
"We can't do anything about what the government is doing, but it's up to us to be responsible for our health. Make it an annual thing as part of your hauora check."
Hei Āhuru Mōwai recommends that bowel screening starts at age 50 for Māori and Pacific peoples.
RNZ reported last week that Prime Minister Christopher Luxon refused to commit to lowering the age for bowel screening in the current term.
Te Whatu Ora was approached for comment.
LDR is local body journalism co-funded by RNZ and NZ On Air.