Kidney Health New Zealand Tākihi Hauora Aotearoa (KHNZ) is calling on the government to address the "woeful" low number of Māori patients who receive kidney transplants.
KHNZ wants Te Whatu Ora/Health NZ and Te Aka Whai Ora/The Māori Health Authority to be more transparent, to integrate tikanga Māori/customs and values, and to address racism Māori patients experience in the healthcare system.
It also wants the government to consider establishing a Māori Kidney Transplant Taskforce.
It comes after a study published last year showed in the past five years, only seven Māori patients had been given a preemptive kidney transplant (as a first-line treatment), compared with 125 patients who were non-Māori/non-Pasifika.
Acting general manager of KHNZ, Traci Stanbury, said the organisation has long known that kidney transplant rates for Māori patients have been abysmal.
"Their actual rates of receiving a transplant, especially a pre-emptive planned transplant from a living donor, are woefully low compared to non-Māori, and therefore in breach of Te Tiriti Waitangi," she said.
In 2019, Māori accounted for one-third (32.0 percent) of all patients who started treatment (dialysis) for kidney failure, because they didn't receive a transplant.
That's despite Māori making up only 16.5 percent of the total population in Aotearoa.
Stanbury said the study suggests racism and prejudice are major barriers for equitable healthcare access for Māori.
"People who are well enough and receive a kidney transplant rather than dialysis live longer (by 10-15 years on average) and generally have better overall wellbeing."
Forty Māori patients and their whānau took part in the study, at different stages of the transplantation process, and the researchers found the vast majority had experienced institutional, personally-mediated, and internalised racism.
That's despite the patients in the study not being asked about racism.
Data from the National Renal Advisory Board shows preemptive kidney transplants (as first treatments) are given to non-Māori at a rate 14 times higher than Māori - meaning Māori end up on dialysis at a far higher rate.
Just one Māori patient nationwide had a preemptive transplant in 2019.
Stanbury said it's "concerning research."
Patients in the study reported not understanding much about the processes around kidney disease treatments, and not knowing what words to use.
One patient noted they were navigating a health system "not designed for indigenous people".
Stanbury said this is because patients didn't have "easy access to culturally specific assessments, weight management criteria and support, and resources for awareness campaigns and marae-based education".
Professor Suetonia Palmer, a nephrologist (kidney specialist) based in Ōtautahi/Christchurch, was one of the study's co-researchers.
She said several patients in the study felt excluded and devalued by an alienating healthcare system, which lacked tikanga and Te Reo.
One patient said: "We need a person in a position that's got power that can hold them accountable, and a system that's not designed to fail Māori."
Many "felt unworthy, unconfident, and whakamā [shy or ashamed]", which led to disengagement.
"Personally mediated racism was experienced by many of our study participants as racial profiling, with explicit forms of racism reportedly directed towards patients and their family."
As a result, patients lost trust in the health system and decision-makers, Palmer said.
KHNZ said it'll take a lot of work by Te Aka Whai Ora before "more Māori patients desperate for kidney transplants miss out on life-saving care".
Similarly, the study's authors said Māori kidney disease patients and their whānau point to an unfair health system.
"Addressing racism at all levels is imperative if we are to address inequitable outcomes for Māori requiring kidney transplantation," they said.
