This cervical cancer prevention week, we can no longer ignore racial inequity in gynaecological health

The impacts of cervical cancer, and poor gynaecological health are devastating, and disproportionately experienced by ethnic minority women. This cervical cancer prevention week, Leona Letts, RHO Senior Policy Officer, spotlights the need for urgent action to address these unacceptable inequities.

Persistent racial inequity in cervical cancer

While there has been progress in recent years in combating misinformation, reducing stigma, and improving education, we need more ambitious action to tackle entrenched racial inequalities in cervical cancer, and in gynaecological healthcare more broadly.

In the UK, cervical screening is offered to women and individuals aged 25 to 64 to test for high-risk Human Papillomavirus (HPV), a major cause of cervical cancer. It is estimated that in England each year 520 cases of cervical cancer are linked with deprivation, which is more likely to be experienced by certain minoritised ethnic groups, such as Pakistani, Bengali, and Black groups. Some ethnic minority women are less likely to attend cervical screening, with Asian women having a 32% lower uptake of cervical screening compared to White women. Lower uptake of screening can result in cancer symptoms not being detected early, worsening survival rates. This is key when roughly 95% of women will survive their cancer for 5 years or more after cervical cancer diagnosis compared to just around 15% of women diagnosed at the most advanced stage.

Compounding this inequity, poor ethnicity data collection means the scale of inequalities within cervical cancer is difficult to gauge.  Latest data available from 2017-19 shows that mortality rates for cervical cancer are higher for Black African women (4.9 per 100,000 per year) compared to White women (2.7 per 100,000 per year). But what we do know about inaccuracies of ethnicity data means this could well be an underestimate.

Reasons for these inequities can be varied and, as outlined by The King’s Fund, can include low awareness of, or stigma towards, cervical and other cancers and symptoms; mistrust and previous negative experiences within the health system; cultural beliefs; anxiety associated with male healthcare providers; caring and work responsibilities; as well as language barriers and poor access to interpreters. Migration status can compound this inequity, with refugee women facing multiple interrelated sociocultural, religious, and structural barriers. Such factors can contribute to lower cancer screening rates and delays in seeking help.

Gendered racism in gynaecological health

This indicates the clear and urgent need to address racial and ethnic inequity in cervical cancer. But the problem doesn’t stop there. The issues that we see in cervical cancer are indicative of a broader crisis in gynaecological health. Medical misogyny is compounded by racism, and ethnic minority women sit at the intersection of these challenges. Too often, ethnic minority women are not getting timely, compassionate care they need.

The evidence of racial inequity in gynaecological cancers, and gynaecological health is staggering:

• South Asian women and African and Caribbean women are more likely to be diagnosed with breast or ovarian cancer at a later stage, when treatment is less likely to be effective
• Black and Asian women are up to 2.5 times more likely to be diagnosed with PCOS, and those from ethnic minority backgrounds more likely to present with more severe symptoms such as insulin resistance
• Black women are diagnosed with fibroids at younger ages with larger and more numerous growths. Black women are 2 to 3 times more likely to experience severe symptoms like pelvic pain and fertility issues
• Black women are more likely to be diagnosed with uterine cancer at a later stage, and have higher mortality rates than other ethnic groups
• 34% of Black women were diagnosed with ovarian cancer via an emergency presentation, more than any other ethnic group, compared to 29% of White women
• Knowledge gaps and misattribution of red-flag symptoms, in particular vaginal bleeding, have been reported by endometrial cancer survivors of Black ethnicity

In the RHO’s Trust in Primary Care report we found strong evidence of ethnic minority women and people facing challenges in accessing gynaecological healthcare. This can manifest in different ways – from being stereotyped, to being ignored by healthcare professionals and to having their concerns dismissed. Our research found a profound lack of cultural awareness and education around the barriers and challenges faced by ethnic minority women, which negatively impact health outcomes and health seeking behaviour.

A participant from our research spoke of the damaging effects of this, saying:

It took 26 years of misdiagnoses and not being listened to, to finally be diagnosed with endometriosis. Which at that point had left me infertile and erased any less invasive treatment options. It wrecked my life. Women’s health is not taken seriously AT ALL. Even less so when you are non-white.

(Female, Mixed White & Black Caribbean, 45-54 years)

What the RHO and communities are doing about this

We know communities are doing great work to address racial inequities in cervical cancer by providing practical and emotional support, rooted trust, and a strong understanding of faith-based needs and cultural sensitivities. From grassroots groups like Cysters delivering culturally sensitive drop-in clinics to address cervical screening misconceptions, to the Caribbean and African Health Network providing  free, expert-led, online sessions on cervical cancer.

But there is a need for decisive, urgent action from the health system to tackle ethnic inequity in cervical cancer, and beyond. That’s why here at RHO, we’ve put together robust evidence and engaged with political stakeholders and decision-makers to call for changes in gynaecological cancer and health, so ethnic minority women get the dignified care they need.

Last year, we gave written, and oral evidence to the Women and Equalities Select Committee’s parliamentary inquiry into reproductive health conditions. We also engaged with the All-Party-Parliamentary Group on Women’s Health’s spotlight campaign on ovarian cancer.

In both submissions, we highlighted the unacceptable ethnic inequities and the need for improvements in diagnosis, treatment, and prevention for women and girls from Black and minoritised ethnic communities. We called on the Department of Health and Social Care and NHS England to implement several changes such as: undertaking sustained co-production and engagement with diverse communities, prioritizing accessibility and a race equity lens to boost screening uptake, and ensuring the testing and roll-out of innovative diagnostic tools take into account ethnic health inequalities.

Call to action for policymakers

We need a transformation in cervical cancer care and gynaecological healthcare that ensures the diverse needs of ethnic minority women are respected, and that care is culturally sensitive. Without this, the cost of inaction is immense. The physical and mental health of racialised women hangs in the balance, as their ability to live healthy, full lives and thrive are impeded by health inequity. On top of this – the failure to act has real costs for our economy. The preventable socioeconomic burden of cervical cancer in the UK amounts to £406 million.

We must take action to address ethnic inequity in cervical cancer, and gynaecological healthcare, so that no women are left behind.