Kidney Health NZ calls for action to address Māori kidney transplant rate

Since 2017, seven Māori patients received a pre-emptive kidney transplant compared with 125 non-Māori, non-Pasifika patients. Photo / Whakaata Māori

Kidney Health New Zealand is calling for dramatic improvements to what it describes as “woeful” Māori rates of kidney transplantation.

It calls for the Government to take action in light of recent research reporting patient experiences of racial discrimination.

Kidney Health NZ (KHNZ) says Health New Zealand (Te Whatu Ora) and the Māori Health Authority (Te Aka Whai Ora) must encourage more transparency and tikanga Māori policies and practices to achieve equity of care in Aotearoa New Zealand, including consideration of a proposed Māori kidney transplant taskforce.

“We’ve long been aware that while patients identifying as Māori make up one-third of all patients starting treatment each year for kidney failure in Aotearoa New Zealand, 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,” acting KHNZ general manager Traci Stanbury says.

“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.”

Figures from the National Renal Advisory Board show pre-emptive kidney transplants as a first treatment for kidney failure occur 14 times less frequently among Māori than non-Māori.

In 2019, only one Māori patient received a pre-emptive kidney transplant nationwide. In the past five years, seven Māori patients received a pre-emptive kidney transplant compared with 125 non-Māori, non-Pasifika patients.

Stanbury says research published last year suggests racism and prejudice are significant barriers to equitable access for Māori patients.

Published in the Journal of Racial and Ethnic Health Disparities last year, the Aotearoa study authored by a collective of experienced renal physicians and nurses, interviewed 40 Māori patients and their whānau at various stages in the kidney transplantation process between September and December 2020.

Researchers investigated participant perceptions and experiences of prejudice and racism on three levels and sub-levels: institutional (their feeling of being excluded and devalued by health system, of disease stigmatisation, discriminatory body weight criteria and lack of power), personally mediated (their reported experiencing of racial profiling and explicit racism), and internalised racism (their feelings of shame and unworthiness to receive a transplant).

“Despite not being asked specifically about racism in this study, participants reported feeling disempowered and disadvantaged in a health system not designed for indigenous people, nor with easy access to culturally specific assessments, weight management criteria and support, and resources for awareness campaigns and marae-based education,” Stanbury says.

Study co-researcher and Christchurch kidney specialist Professor Suetonia Palmer. Photo / Supplied

Study co-researcher and Christchurch kidney specialist Professor Suetonia Palmer says many participants reported feeling excluded and devalued by a healthcare system that did not incorporate or recognise tikanga Māori values and practices, resulting in their increased alienation and 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. This, unfortunately, led to their mistrust of the healthcare system and perceived failures in shared decision-making,” Palmer says.

“Racism was also internalised by many participants who reported they felt unworthy, unconfident and whakamā [shy or ashamed], with a loss of voice and power, and this resulted in their disengagement with the kidney transplantation process.”

Study participants self-reported that “knowledge is power, and we don’t have knowledge”; that “we can’t advocate for ourselves because we don’t know the words to use, we don’t understand the process and how we can drive it” and that they needed strong advocates to speak up for their rights and demand policy change to fight for equitable outcomes regarding transplantation.

One person stated: “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”.

KHNZ says Te Aka Whai Ora’s mandate is to direct and guide the health system to understand and respond to needs of whānau Māori.

“There is much work to do and we hope real progress is seen soon before more Māori patients desperate for kidney transplants miss out on life-saving care.”