Call For Government Action After Research Highlights Racism Experienced By Māori Needing Kidney Transplants

Kidney Health New Zealand (KHNZ) is calling on the government to dramatically improve “woeful” Māori rates of kidney transplantation in light of recent research reporting patient experiences of racial discrimination.

KHNZ says both 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” says acting KHNZ General Manager Traci Stanbury.

“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 fourteen times less frequently among Maori than non-Māori. In 2019, only one Maori patient received a pre-emptive kidney transplant nationwide. In the last 5 years, 7 Maori patients received a pre-emptive kidney transplant compared with 125 non-Maori, non-Pasifika patients.

Stanbury says concerning research published last year suggests racism and prejudice is a significant barrier 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 excluded and devalued by health system, of disease stigmatization, discriminatory body weight criteria and lack of power), personally mediated (their reported experiencing of racial profiling and explicit racism), and internalized 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, says Stanbury.

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 recognize 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, says Professor Palmer.

”Racism was also internalized by many participants who reported they felt unworthy, unconfident, and whakama [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 Maori”.

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.”

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