FormalPara Key Points

  • Cervical cancer is now preventable.

  • Human papillomavirus (HPV) causes most cervical cancers, and screening for HPV prevents cervical cancer.

  • HPV self-testing is a game changer because “it is empowering.”

  • Indigenous peoples demand “No Elimination Without Us!”

Few diseases reflect global and within-country inequities as much as cervical cancer, despite it now being largely preventable through vaccination, cervical screening, and the treatment of precancerous cell changes. In Australia, Canada, Aotearoa New Zealand, and the United States, Indigenous women (and people with cervices) have a markedly higher risk of cervical cancer incidence and mortality than non-Indigenous women [1]. Once screened, achieving timely diagnosis, treatment of abnormalities, and/or subsequent follow-up all support cervical health. Most cervical cancers occur in those who either have not or have less frequently been screened [2]. Barriers to screening, diagnosis, and treatment, including differences in access to and quality of care impacted by institutionalized racism and health system structure, result in unacceptable cervical cancer inequities across many countries. We can do much better.

Human Papillomavirus and Cervical Cancer

Human papillomavirus (HPV) causes cervical cancer. For most people, this virus is naturally eliminated, preventing abnormalities of cervical cells and cancer. Almost everyone comes into contact with HPV, and most people with HPV detected on the cervix do not develop cancer. However, for some, persistent infection by certain types of HPV can cause cervical cancer. The majority of precancerous lesions (cervical dysplasia) and cervical cancers are caused by HPV types 16 and 18 [3].

Compared with cervical cytology (the “cervical smear” involving a speculum examination by a trained provider), HPV-based screening is a more sensitive method for detecting cervical changes that may lead to cancer, providing 60–70% greater protection [4]. This better test enables greater detection of precancerous diseases compared to cytology. The negative HPV test provides protection that cancer will not occur in the next 5 years, supporting a longer interval between screens (e.g., 5 years).

HPV Self-Testing: An Equity Tool for Cervical Cancer Prevention

HPV self-testing using a vaginal swab is a game changer, providing sensitivity and specificity comparable with clinical testing [5] and reducing deaths by cervical cancer. For Indigenous peoples in high-income settler-colonial nation-states, HPV self-testing is more likely to be taken up compared with cervical cytology [6, 7].

Women appreciate the privacy and noninvasiveness and call it positive and empowering for them to be able to do it themselves. Women described it as taking the whakamā (reticence) out of the process: “I really actually enjoyed the process … less intrusive, that’s what I liked, not having someone else to look at your bits to do it, and that whole whakamā [reticence] around it, and just something I could do with no concerns or no difficulties” [8].

Described as an empowering method, people report that, as a descriptive term, “self-testing” is, in itself, empowering [9].

When offered in a culturally responsive way, high uptake of HPV self-testing increases opportunities for people to successfully engage in follow-up diagnosis/treatment if required, substantially reducing inequities.

No Elimination Without Us!

The World Health Organization (WHO) recommends that all countries offer HPV testing as the primary method for cervical screening [10]. In May 2018, the WHO Director General announced a global call for action to eliminate cervical cancer, and in August 2020, the World Health Assembly adopted the global strategy for cervical cancer elimination (incidence rate of below four per 100,000 women). To achieve elimination in the next century, each country is called to meet the 90-70-90 targets by 2030:

  • 90% of girls fully vaccinated with the HPV vaccine by the age of 15.

  • 70% of women screened with a high-performance test by 35 and again by 45 years of age (scaling up to 95% in 2045).

  • 90% of women identified with precancer treated and 90% of women with invasive cancer managed.

The WHO targets seek to address the unjust differential burden of cervical cancer between low-, middle-, and high-income countries, but they fail to address the rights of Indigenous peoples to be counted within the elimination targets. In this way, within-country inequities remain hidden. No country should be allowed to declare elimination without Indigenous peoples also reaching the target: No Elimination Without Us!

International Alliances

Concerned by the inequitable burden of HPV disease for Indigenous peoples globally and the lack of meaningful action to improve Indigenous cervical health, an international collaboration of Indigenous and non-Indigenous researchers, clinicians, and stakeholders published a call to action [11]. The International Indigenous HPV Alliance (IIHpvA), supported by the International Papillomavirus Society (IPVS), outlined fundamental principles to guide an equity-driven approach involving partnerships with Indigenous peoples and communities, with Indigenous leadership. To reduce Indigenous HPV-related health burden, recommendations for action included addressing and improving Indigenous data quality and ensuring that HPV-related issues affecting Indigenous peoples are presented at relevant forums. The IIHpvA continues to work to ensure that the call-to-action “No Elimination Without Us” is shared with a wide range of audiences (including media) and offers Indigenous-led appropriate and sustainable solutions to inform equitable elimination action strategies.

Cervical Cancer Prevention in Aotearoa

The National Cervical Screening Program (NCSP) in Aotearoa New Zealand was established in 1991. Prior to this, opportunistic screening was conducted in many general practices and family planning clinics, but there was no organized program nor national standards. Until 2023, those eligible for screening (since November 2019 between the ages of 25 and 69; previously between the ages of 20 and 69) were recalled three-yearly for cervical cytology, with recall administered firstly through primary care/general practice and back-up by a central register. While this led to a reduction in cervical cancer incidence by 50%, this screening method has never reached Māori equitably—it has failed Māori. The latest screening coverage data published by the National Screening Unit indicates that 41% of wāhine Māori (Māori women) are underscreened or never screened, compared with 21% of European/other women. These inequities are unacceptable. We need more Māori voices informing the NCSP! We need Māori-led solutions!

He Tapu Te Whare Tangata (The Sacred House/s of Humanity)

He Tapu Te Whare Tangata (The Sacred House/s of Humanity) is the name of a Kaupapa Māori (by, with, and for Māori) body of research, with the goal to eliminate cervical cancer among wāhine Māori through improved screening. He Tapu Te Whare Tangata reflects the veneration of wāhine Māori and people with cervices as whare tangata (the house where human life grows) and the sacredness of the womb from a Māori worldview. The cervix is the neck of the womb, and its health impacts the ability of the womb to fulfill its role as the whare tangata and the ability of wāhine Māori to lead long and healthy lives [8].

The Kaupapa Māori (by, with, and for Māori) research lens of He Tapu Te Whare Tangata values and privileges Māori experiences. Kaupapa Māori research paradigms see being Māori as normal and draw on principles such as Tino rangatiratanga (self-determination), He taonga tuku iho (cultural aspirations), Ako (culturally preferred pedagogy), Kia piki ake i ngā raruraru o te kainga (socioeconomic mediation), Whānau (extended family structure), and Kaupapa (collective philosophy) [12]. These principles drive Kaupapa Māori research projects that challenge inequitable systems to transform and ensure the best health outcomes and wellness for Māori, as Māori [13].

Through the research projects of He Tapu Te Whare Tangata, starting in 2016, HPV self-testing was made possible in selected regions and communities with high Māori populations. This was led by Māori and overseen by kaumātua (Māori elders and knowledge holders). Māori and non-Māori researchers, clinicians, and kaiāwhina (nonclinical community health workers) worked collaboratively in a strength-based, Māori-centered approach, guided by iwi (Tribal) partnerships (including with the Ngāti Pāhauwera Development Trust and Ngāti Porou Oranga) and reflecting tikanga Māori (Māori customs) [14]. Throughout, strong Māori community voices were featured alongside general practice, colposcopy services, and support-to-screen services, with key learnings and findings shared regularly with stakeholders and the National Screening Unit responsible for the NCSP (see Fig. 34.1 showing HPV self-testing promotional material).

Fig. 34.1
A photo of the back side of a woman holding a H P V self-testing kit in her right hand. A text on the backside of her T-shirt reads, cervical screening, ask me about H P V self-testing. A board on the wall on her right side has text in the foreign language.

Promoting HPV self-testing as a cervical screen for a research project in Te Tai Tokerau (Northland Aotearoa). (Photo: F Storey)

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Studies of He Tapu Te Whare Tangata (including qualitative interviewing, clinical implementation, and randomized controlled trials) have shown HPV self-testing to be highly acceptable. For underscreened wāhine Māori, the offer of an HPV self-test was almost three times more likely to result in a cervical screen [15]. Wāhine Māori >10 years from their last screen were almost five times as likely to be screened when offered HPV self-testing compared with the control group (cervical cytology with a speculum).

Wāhine Māori and their whānau have highlighted the importance of culturally safe and empathetic care through the cervical screening pathway—from self-testing to diagnosis and treatment [16]. Care must be taken in the delivery of HPV-positive self-test and colposcopy results to ensure understanding and mitigate any trauma.

Research as Activism

Offering the new and better cervical screening test through He Tapu Te Whare Tangata in communities with predominantly Māori populations was an intentional equity action—research as activism! Māori-driven research, privileging whānau Māori voices and experiences, has challenged the inequitable cervical screening system, highlighted system failings and barriers, and introduced possible solutions. As stated by influential Māori health champion the late Dr. Paratene Ngata, “If you get it right for Māori, you get it right for all.”

Working overall toward global Indigenous wellbeing, together we can share research evidence, call for the improvement of safe Indigenous data collection, and build and grow alliances and collaborations that challenge colonialized systems to achieve equity for Indigenous peoples as a fundamental right [17].

Campaigning and Advocacy

In the absence of meaningful government action, we have used research to support Indigenous peoples in determining their own transformative change. The work of He Tapu Te Whare Tangata informed wider activism, including the establishment of a nationwide campaign committee of champions, which led to a submission to the Māori Health Select Committee in 2019 to persuade the Ministry of Health and government to fund the change to a primary HPV cervical screening program (see Fig. 34.2) and public lobbying.

Fig. 34.2
A close-up photo of 3 women and a man sitting before a table with table mics fixed in it. A few people are sitting behind them.

Submission to the Māori Health Select Committee (pictured left to right: kaumātua Matthew Bennett, Lady Tureiti Moxon, Professor Bev Lawton, and Dame Silvia Cartwright). (Photo: NZ House of Representatives collection)

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Campaigns included online petitions: “Prevent Cervical Cancer! Introduce HPV Self-Testing to Aotearoa—We Need it NOW” in 2021 (see Fig. 34.3) and “Urgent Call for FREE Cervical Screening” in 2023.

Fig. 34.3
A photo of 4 women standing and holding a H P V self-testing kit in their hands. The woman on the left is carrying a girl and the girl is holding a testing kit.

Online petition host and campaigners calling for the HPV self-test to be introduced in a new National Cervical Screening Program (pictured left to right: Tracey Mackay, Kim Chappel, Jordanna Hermens, and Natalia Repia). (Photo: F Storey)

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Through public crowdfunding, a documentary was filmed at “Shear-4-a-Cause”—a rural farming community sheep shearing fundraiser where a mobile cervical screening unit was piloted (see Fig. 34.4). In the film, shearers, wool handlers, whānau, health practitioners, and researchers highlighted the continuing barrier of cost and the unique cervical screening challenges faced by wāhine who live rurally. The film was published by an online news website and was shared widely through social media.

Fig. 34.4
A close-up photo of the hands of a person holding the H P V testing kit. The strip is held in the right hand and a tube-like container in the left hand.

The offer of HPV self-testing at “Shear-4-a-Cause” shown in the film “Cervical Screening in Rural Aotearoa: Preventing the Preventable.” (Visit www.hpvselftest.nz to watch the documentary on YouTube)

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These campaigns featured strong Māori community voices and provided easily accessible and shareable platforms for individuals and organizations to champion the eradication of cervical cancer and a change to the NCSP. This led to a call from the champions for a cross-political party commitment to free cervical screening for all and an Aotearoa Elimination Action Strategy setting 2035 as the year cervical cancer is eliminated in Aotearoa New Zealand.

Equity Levers

Leveraging for change required a collective of individuals and organizations working together. The wide range of support, encouragement, and campaigning from kaumātua, Māori health providers, iwi organizations, communities associated with He Tapu Te Whare Tangata, medical and practitioner colleges, petition signers, Hei Āhuru Mōwai Māori Cancer Leadership Aotearoa, members of the IIHpvA, and others together contributed to seeing a more just and equitable program finally actioned. Whether the new NCSP responds adequately to the evidence provided by He Tapu Te Whare Tangata in regard to access, equity, and sustainability remains to be seen.

Policy Impact

In May 2021, funding to change the NCSP was announced, five years after the Minister of Health had declared that Aotearoa New Zealand would move to primary HPV screening. The Health (National Cervical Screening Program) Amendment Bill was passed in June 2021, during which the work of He Tapu Te Whare Tangata and its impact was acknowledged, and researchers received parliamentary thanks. In September 2023, after years of campaigning, challenging, and championing, Aotearoa New Zealand became the first high-income country to switch straight to HPV self-testing as the primary screening method for their cervical cancer prevention program. However, further lobbying was—and continues to be—required to ensure the new program is equitable. This included persuading the NCSP that participants presenting with HPV types 16 or 18 are to be referred directly to colposcopy [18]. Only as a result of extensive feedback and lobbying from key groups and organizations (including findings and recommendations from He Tapu Te Whare Tangata) and arguments that an additional cytology option could lead to increased inequities did the NCSP change the drafted pathway.

Separate from this, the collective of individuals and organizations working together have campaigned for cervical screening to be fully funded. While this led the government to commit limited funding to make cervical screening free for Māori and other populations at higher risk of cervical cancer for one year only, this is not enough. The call for the NSCP to be fully funded for all remains to bring Aotearoa New Zealand closer to our goal of cervical cancer elimination and to save lives.

While associated research activism in Aotearoa New Zealand has contributed to informing a new (albeit overdue) program, engaging in a high level of advocacy to ensure it was informed by Kaupapa Māori research findings, whānau voices, champions, and an equity-driven approach was not without its challenges. Whānau, researchers, and others engaging in such “positive disruption” benefited from support from other Indigenous peoples and non-Indigenous allies around the world, together influencing transformational changes and working toward Indigenous wellbeing. No one should die of this preventable cancer!

We first and foremost acknowledge the whānau who have generously participated in He Tapu Te Whare Tangata, with thanks to the practice groups involved—Queen Street Practice, Ngāti Porou Oranga, and the communities of Te Tai Tokerau. Special thanks to Te Tātai Hauora o Hine Kāhui Kaumātua (Council of Elders) for their guidance and vision—Matthew Bennett, Charlie Lambert, Wendy Dallas Katoa, and Dame Areta Koopu. We acknowledge our fellow researchers and the champions who have contributed and mobilized support to bring about change, including the Cancer Society of New Zealand, He Hono Wāhine, RANZCOG, Smear Your Mea, RNZCGP, Mana Wāhine, Mahitahi Hauora PHE, and Hei Āhuru Mōwai Cancer Leadership Aotearoa—ngā mihi (thank you). We pay our respects to all whānau who have been impacted by cervical cancer—me aro kī te hā o Hine–ahu-one (pay heed to the dignity of women).