Tūtakarerewa—Indigenous advocacy and structural racism in bowel cancer screening in Aotearoa New Zealand

Māori, the Indigenous people of Aotearoa New Zealand (Aotearoa), have a younger age profile and die almost 8 years earlier than non-Māori.^1,2 Māori are disproportionately affected by cancer at younger ages, are more likely to be diagnosed at a more advanced stage of disease and are more likely to die from cancer compared with non-Māori people.^3–5

Hei Āhuru Mōwai Māori Cancer Leadership Aotearoa is a charitable network of Māori cancer specialists and whānau in clinical, research, management and advisory positions right across the health service and health research spectrum. Our members have backgrounds in oncology, general medicine, epidemiology and public health, onco-surgery, wairua (spiritual) healing, health promotion, biomedical cancer science, mātauranga Māori (Māori knowledge), cancer research, cancer screening, equity, haematology, pharmacology, advocacy, nursing, Māori health and cancer care service provision.

We provide system leadership to inform and influence national cancer control policy and advocate on issues affecting whānau Māori (Māori families and communities). We focus on cancer research, system-level cancer issues and collaboration with Māori leaders across the health sector.

Aotearoa has one of the highest rates of bowel cancer in the world.⁶ Although both Māori and non-Māori have a similar chance of being diagnosed with bowel cancer, this tends to happen at older ages for non-Māori. In addition, bowel cancer incidence is increasing for Māori, while the incidence has been trending down in non-Māori.^7,8 Further, Māori have much lower cancer survival rates than non-Māori and are more likely to die within 2 years of a bowel cancer diagnosis compared with non-Māori.⁹

Although Pacific peoples are less likely to be diagnosed with bowel cancer compared to the NZ European population, bowel cancer is the third-most common cause of cancer death among Pacific peoples. This represents a significant mortality burden.¹⁰

In this policy review we trace the timeline, delays and advocacy in the 15 years since 2010, as cancer leaders from Aotearoa fought for an equitable bowel screening programme (BSP) in the face of sustained structural racism.

Background

Screening programmes provide opportunities to improve health by identifying people within a population who are at higher risk of a health problem or a condition. The rationale is that, for those with the condition, early intervention or treatment can be provided, resulting in reduced incidence and/or risk of illness or death.⁷ Bowel screening is an effective approach for preventing bowel cancer and improving survival by identifying and diagnosing bowel cancer earlier and removing polyps that have potential to develop into bowel cancer.^11,12

Screening programmes for breast and cervical cancer have existed for decades in Aotearoa. Cancer screening programmes invest heavily in quality, including monitoring screening pathways by ethnicity.⁷ Regardless of this, screening programmes consistently fail to deliver on equity for the Indigenous population in Aotearoa.¹³

The national breast and cervical screening programmes continue to underserve Māori with regard to reaching the 70% (breast) and 80% (cervical) minimum access target rates. This is illustrated by equity gaps of 10% for breast screening between Māori (63.4%) and Other (73.4%) and 14.8% for cervical screening between Māori (66.8%) and Other (81.6%).^14,15 The National Bowel Screening Programme (NBSP) follows the same pattern of underserving Māori with regards to access. This is depicted in Figure 1, which reveals an 11.3% equity gap between Māori (50.8%) and Other (62.1%) in access to the programme.¹⁶

Done well, national screening programmes could lead the way to achieving equity, accelerating Māori health gains and upholding Māori rights to health. In the case of breast screening, evidence shows that when women are screened and diagnosed with breast cancer through the national breast screening programme (BreastScreen Aotearoa [BSA]) there are no survival inequities between Māori and non-Māori due to coordinated cancer control measures over many years.¹⁷

For cancer screening programmes to be equitable, multiple factors such as prevalence, mortality rates, invitation, diagnosis and treatment pathways need to be considered from design through to delivery and monitoring. An obvious and evidence-based way to ensure that screening programmes deliver on equity for Indigenous populations is to have Indigenous cancer experts involved in leading the design, implementation and monitoring of cancer screening programmes for their own populations. The NBSP team has had considerable input from Indigenous cancer experts about how to ensure that the NBSP is equitable. However, this advice has not been consistently incorporated into the planning and delivery of the NBSP.

View Figure 1–3.

Methods

A search was carried out of documentation relating to the NBSP, including minutes of meetings, correspondence between Hei Āhuru Mōwai members and government departments, government policy and strategy documents, media releases and publications, and position statements. A summary of the content was included in the review of bowel screening, and the bowel screening age extension was mentioned. From this information, a draft timeline of events was created. Key informants identified in the search were interviewed to help source further documentation and to review the timeline and content.

The draft analysis was circulated to subject experts who collaboratively reviewed it for key decision and delay points. Findings from these steps are presented below, with critique and discussion at each key point.

NBSP

A national screening programme for bowel cancer was officially announced by the New Zealand Government in 2016 for those aged between 60 and 74 years.¹⁸ However, the 4-year pilot leading up to the announcement had utilised an eligible age range of 50 to 74 years.¹⁹ Māori cancer leaders, particularly those from Hei Āhuru Mōwai Māori Cancer Leadership Aotearoa, recognised the implications of this 10-year age difference for increasing inequities. They reviewed the evidence, recommended changes and started an advocacy campaign to have the age lowered for Māori and Pacific peoples.

New inequities created

In 2016, in pursuit of solid evidence of the impact of the BSP on equity, Hei Āhuru Mōwai sought data modelling expertise. Markov model analysis found that health gain, measured in Quality-Adjusted Life Years (QALYs), for those who had access to the BSP, would be over twice as high for non-Māori than for Māori.¹³ Thus, the proposed programme would create new inequities between Māori and non-Māori by providing more health gain for non-Māori.²⁰

Markov modelling was also employed to identify adjustments to the bowel screening pathway that would create equal health gains for Māori and non-Māori.²⁰ This showed that lowering the starting age of screening to 50 years for Māori, and keeping it at 60 years for non-Māori, would result in equal proportions of diagnosed cancers occurring within the eligible age ranges for both groups. This solution was also shown to result in equal health gain from bowel screening for both groups.²⁰

Over the next several years, reiteration of these key messages continued via an informal coalition of entities, including chief executives and Māori general managers of the (then) district health boards, Te Ohu Rata o Aotearoa (the Māori Medical Practitioners Association) and a national representative body for general practitioners. Methods and forums included peer-reviewed publications and unpublished papers, presentations, letters and meetings held with ministers in Parliament (particularly the minister of health), position statements on bowel screening and media stories. Formal structures and spaces also brought together those with an advocacy agenda, specifically, the National Māori Bowel Screening Network and the National Pacific Bowel Screening Network.

Evaluation reports and an independent review

The Final Evaluation Report of the Bowel Screening Pilot 2016¹⁹ had numerous recommendations for equity. It acknowledged that the interim BSP evaluation had reported that the programme was exacerbating inequities for Māori and those living in deprived areas, due to low participation in the context of high disease burden.

The report recognised that while Māori and Pacific expert advisory groups were set up during the early implementation of the pilots, support for these groups to participate in and influence the pilot diminished over the course of the programme. In their initial work, these groups identified that a systematic and structural focus on equity for Māori and Pacific peoples was not being consistently applied and resourced. They also highlighted that methods to increase participation were stymied by the pilot’s invitation pathway, which did not initially support active follow-up for people who did not return their screening tests.¹⁹

The final evaluation report of the BSP pilot concluded that the NBSP must lead with an equity focus to avoid increasing inequities in bowel cancer outcomes. It made 11 comprehensive equity recommendations, which included having a clear equity statement: Māori and Pacific leadership at the governance level, dedicated resource to address structural and systemic approaches to equity, a focus on structural and systems improvement, multifaceted and multidisciplinary approaches, monitoring of data and key performance indicators (KPIs) by an independent Māori and Pacific monitoring group, connecting with Māori and Pacific primary health and other community providers, and that an equity focus be developed and implemented for the symptomatic bowel cancer pathway.¹⁹ Of the 11 recommendations made in the final evaluation report of the BSP pilot, the authors of this study conclude that three have been partially implemented.

In 2018, an independent review of the NBSP was released by the Health Quality & Safety Commission.²¹ The review was conducted by a panel with no Māori involvement, and its terms of reference did not include a specific focus on understanding the programme’s impact on equity. Disturbingly, the report framed inequities in access to bowel screening between Māori and Pacific and non-Māori/Pacific populations as a health literacy issue, suggesting that a lack of understanding among Māori and Pacific populations resulted in low participation in the programme.²¹

Nevertheless, the report restated concerns from the final report of the 4-year BSP pilot—that “The current NBSP has not adequately addressed inequities for Māori.”²¹ Furthermore, two of the 19 high-level recommendations from the review included equity. One critical recommendation was the need to strengthen resourced Māori involvement in design of the programme and one essential recommendation was that the Ministry of Health – Manatū Hauora note the health and disability sector’s concern about the current age-range restrictions, in particular in relation to the equity impact for Māori “as additional data becomes available”.²¹ However, they did not reference the published 2017 equity-focussed modelling research¹³ in the report, and, in a move that would continue to exacerbate equity issues, further recommended that the National Screening Unit should plan for an extended age range for all population groups.

Bowel screening expert forum

In early 2019, following persistent pressure from Hei Āhuru Mōwai and others, a bowel screening expert meeting was hosted by the National Screening Unit. The meeting drew representatives from key national organisations and experts from across the cancer care sector. The focus was on achieving equity for Māori in bowel screening, with the latest evidence presented as the basis for robust discussion. The evidence included an updated evaluation of bowel cancer trends, showing that the age-standardised rates of bowel cancer for Māori were increasing while the rates for non-Māori were decreasing.⁷ The conclusion from this evidence was that “In the next few years we will face a new inequity in health for Māori: a higher incidence of bowel cancer.”²⁰ Based on the evidence at that time, a series of equity recommendations for government were established.²²

The principal recommendation from this forum was that the bowel screening age should be lowered to 50 years of age for Māori. While those in attendance had been advised from the outset that changes would not be considered until after the national rollout was complete, there was consensus among attendees that it would be unethical to wait any longer to correct this inequity-by-design. A note of urgency was placed on this recommendation.²²

Another recommendation from that meeting was that “value added” initiatives be explored to increase health gains from the NBSP.²² Such initiatives can not only improve Māori health through directly reducing death and disease rates from the condition being screened for, but they can also include other health-enhancing initiatives, such as provision of on-the-spot care such as blood pressure checks or referring to other screening programmes or further targeted care.

Evidence ignored

In September 2020 the Government, via the Ministry of Health – Manatū Hauora, announced the decision not to proceed with considering a NBSP age extension for Māori and Pacific peoples until the existing programme was fully rolled out—at that time estimated to be late 2021. Documentation sought under the Official Information Act 1982 shows the advice provided to the country’s leaders at the time.²³ Despite numerous redactions in the documents provided, it is clear that the argument against lowering the screening age for Māori and Pacific peoples focussed on unfavourably comparing its gain against other, less resource-intensive interventions. The incapacity of the health sector to provide colonoscopies was a significant consideration in the final decision not to extend the programme.²³

A flurry of media articles ensued, representing the many health leaders, researchers and providers, both Māori and non-Māori, who were frustrated with this decision given that it was discriminatory and delayed required actions.^24–27 This was a major setback for a long and complicated journey. In fact, the rollout of the national programme would not be complete until mid-2022, almost 2 full years after the announcement and approximately 5 years after the NSBP commenced.

Māori cancer leaders persevered

Continuing their campaign, Hei Āhuru Mōwai persevered for another 2 years after the announcement. Their messages remained unchanged. They were delivered at all appropriate opportunities and forums, particularly those where government employees and officials were present. The media became an important partner in collaborative efforts to generate the necessary change.²⁸

Finally, in Budget 2022, the Government committed to extending the bowel screening age for Māori and Pacific people to 50 years of age in 2023.²⁹ While this announcement was celebrated, it was long overdue and would initially only apply to three regions, covering approximately 13% of the country’s total population and 20,000 Māori and Pacific people.²³

A bittersweet victory

The decision to lower the screening age for Māori would help to fix long-standing issues with the programme. It would not, however, detect bowel cancer earlier for those that were missed during the years that this issue was being considered and debated. While it is difficult to quantify the impact of structural racism, sharing details of the journey can add to the evidence base. It can also draw attention to those that have suffered the consequences of a long, arduous and anticlimactic journey.^30,31 Of these there are many, including one of our own. Our māreikura (esteemed friend) was diagnosed with late-stage bowel cancer in 2022, at age 58; 2 years too young for the eligibility criteria at the time, but 8 years past the eligibility age recommended for Māori. Her story illustrates some of the issues highlighted by the data.

During the early months of 2022, I began to experience the typical “bowel changes” of pain and rectal bleeding that indicated I should make a visit to my GP. I was 58 years old. My GP was reluctant to refer me for a colonoscopy because he considered that I was underage and that his request would be declined by the hospital service unless I was 60 or had more significant symptoms. His tone changed when I said I had health insurance that would cover the procedure.

I was ultimately diagnosed with metastatic colorectal adenocarcinoma.

My long history as a researcher into cancer inequities for Māori had somewhat prepared me for a diagnosis like this. After all, why should I be any different to my research participants? However, in my sadness, fear and acceptance, I am also angry. I would not be facing illness, pain and early death if I had had access to bowel cancer screening at an equitable age. I [along with] my research [was] a part of the consistent calls for the screening age to be lowered to 50 for Māori. The surgeon who resected my bowel was unequivocal in his statement that, had I been screened, my cancer would have been either prevented or caught early enough that it would not have metastasised. I received an invitation to join the national bowel screening programme on the week I turned 60, but it was too late.

My story is no more or less important than any of the hundreds of stories I have heard from bereaved whānau. I share it here as yet another piece of evidence that the decisions made to maintain an inequitable bowel screening age are costing Māori lives. This time, the life it has taken is mine.³²

Ongoing inaction

It is undeniable that there was inaction in the face of need during this time, evidenced by expert data modelling and supported by experts in the sector.²⁴ A number of justifications for the repeated decisions to not extend the age range had been provided throughout the years. There was always a reason. According to personal communication from one of our most resolute advocates, “The hold-up was fear of white backlash, [it] was the number one factor holding this progress back. This is a stark expression of whiteness; such decisions provide clear evidence that Pākehā [NZ European] feelings are valued more than Māori lives.” While the 2022 announcement was somewhat anticlimactic with its slow, phased rollout, it seemed that the years of perseverance had achieved the necessary result to eventually achieve an equitable NBSP.

In 2023, however, a new government was voted in partially on a campaign of rolling back Māori equity and sovereignty gains. They immediately commenced a programme of defunding, disestablishing and reversing initiatives that sought to address Māori inequities and agency across the health, education, justice and social sectors.³³ By mid-2024, concerns were being raised about the future of the NBSP age reduction rollout for Māori and Pacific peoples. During media investigations, it emerged that the previous Government had not completed the ministerial approval required to progress the rollout and that the application of the policy was again under consideration.³⁴ The inaction on the part of the previous Government had increased the already substantial risk to the programme posed by the racist agenda of the current Government.

Discussion

Structural racism “normalises historical, cultural and institutional practices that benefit white people and disadvantage people of colour”³⁵ thereby making whiteness both central to society and invisible to advantaged observers. It establishes and reinforces the unequal distribution of resources, as well as the attendant socio-culturally embedded justifications for such inequalities. Structural racism functions in tandem with institutional racism, whereby institutions or organisations act (or fail to act) in accordance with the norms established by structural racism.

In this paper, structural racism describes the focus of successive governments on the bowel cancer trajectory of non-Māori, non-Pacific peoples. It normalises the expectation that a successful programme should focus on addressing the health needs of the older population aged 60–74; primarily white people. It asserts that consequent inequities represent a failure of the Māori and Pacific population to protect their own wellbeing, even though the majority of Māori diagnosed with bowel cancer in a given year are not eligible for bowel screening. More than that, it doubles down on blaming the victims of such inequities by portraying their cancer diagnoses as evidence of low health literacy.²¹

The enactment of a structurally racist BSP is undertaken at the institutional level, where organisations such as the Ministry of Health – Manatū Hauora, the National Screening Unit and Te Aho o Te Kahu – Cancer Control Agency make decisions based on societal assumptions about what is normal.²³ The strength of the normalisation created by structural racism is such that even epidemiological modelling was disregarded in the development of the NBSP. This pattern of ignoring, reframing, delays and inaction is consistent with the findings from a national Māori review of the health sector, which concluded that institutional racism is a significant feature of the Aotearoa health system.³⁶

In a call to action, United States cancer researchers issued a challenge to “explicitly name structural racism and describe its operation in scientific research.”³⁷ In this paper we name its impact on Māori lives affected by bowel cancer. Our own call to action to the current New Zealand Government, its advisors and political allies is to recognise and address the healthcare system as a colonial institution, and that “just doing their job” is a profoundly racist act. Radical transformation is required to achieve the opposite of what the current system is designed to do. We recommend that these three key questions be applied to the ongoing consideration of implementing an equitable screening programme, whether for bowel cancer or for other conditions:

• What is the status quo in terms of Māori and Pacific equity in this and associated areas? 
• Who have you included in the design, implementation and monitoring of the programme?
• How is this decision/proposal going to address the identified inequities in the short and long term?

Conclusion

Structural racism delayed the decision to lower the age range of bowel screening for Māori, to the detriment of Māori lives. This advocacy journey provides evidence of structural and institutional racism in Aotearoa New Zealand—specifically, deliberate inaction in the face of need. It showcases the perseverance displayed by and required of Māori leaders in cancer control to respond to the ongoing push-back from government and its employees, despite substantial evidence to support the advocacy efforts. While the advocacy efforts resulted in some belated pro-equity action, a change in government has placed equitably designed population health programmes in jeopardy.

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