This year, the theme for UICC’s World Cancer Day examines inequalities in cancer care globally and looks at how we can close this gap. This campaign will continue for 3 years and in 2022 the campaign focuses on understanding and recognising the inequities in cancer care around the globe. The inequity and inequalities in cancer care directly impacts death from cancer, and the barriers that people face from diagnosis to survivorship and beyond.
Income, education, location and discrimination based on ethnicity, gender, sexual orientation, age, disability and lifestyle are just a few of the factors that can negatively affect care. Whilst many factors predispose a person’s risk of developing cancer including sex, lifestyle, and family history, the role of socio-economics and structural bias within healthcare and cancer organisations cannot be denied when it comes to cancer care and outcomes.
Poor outcomes in UK for ethnic minorities
In the UK, despite having free healthcare for all, we have the poorest outcomes for cancer in Europe. The type of cancer care that you receive will depend on many things including your postcode, gender and sexual identity, ethnicity, language, education and more. There is a vast disparity in cancer awareness screening , diagnosis and survival among different communities in the UK.
Evidence has shown (see cancer research and skin cancer data) that people of different races need to be included in campaigns so that they understand the health implications and that they also need to be aware of cancer risk. Research shows that people from ethnic minorities are often diagnosed later and at a more advanced stage which leads to poorer outcomes - this is partly due to cultural and socio-economic factors including that they don’t think that they will develop cancer as media is not targeted to them. Evidence suggests that the gap in provision of cancer information is especially high in people from Black, Asian and Ethnic Minority groups, potentially resulting in lower awareness of cancer risk factors, signs and symptoms and cancer services, and health seeking behaviour due to socio-economic reasons and education. (Macmillan report from 2014 The Rich Picture People with Cancer from the BME groups).
South Asian and black women had lower breast cancer awareness than white women. (National Cancer Registration and Analysis Service - Breast Cancer : Ethnicity - NCIN Data Briefing
Diagnosis and screening
Black, Asian and ethnic minorities in the UK feel like they are treated differently to white communities – this data has been collected in several reports including Macmillan’s Richer Picture, reports from Runnymede Trust and King’s Fund). National screening programmes can effectively detect many types of cancer earlier, which results in better outcomes but this requires screening to be offered and taken up equitably.
Ethnic minorities see the GP at least twice more than White people before they get referred to a hospital. (National Cancer Patient Experience Survey 2016).
Language barriers and poor understanding of cultural and religious needs prove to be a barrier to screening and effective follow up and initial diagnosis of cancer.
There is a much lower uptake of NHS breast screening amongst Black, Asian and Ethnic minority women in the UK.
Cancer survivors from White communities are more likely to receive follow-up screening than cancer survivors from BME communities. -Treanor & Donnelly BMC Health Services Research. 2012.
In the UK, we have thousands of people dying early from cancer due to a postcode lottery in the way the NHS diagnoses and treats cancer. In some areas, people have a 61% higher risk of dying just due to where they live, and this is further exacerbated in people of colour. People living with cancer in London report worse experiences of cancer care than those elsewhere in England. This is worse still for minority ethnic groups who account for around two in five – that’s 42.5% – of all people living in London. The research found that patient experience is worse for those who live in the most socioeconomically deprived areas.
Black and Asian cancer patients are:
up to 36% more likely than those who are white to say their treatment options were only partially or not at all explained before they started treatment
up to 48% more likely than those who are White to say they were only partially involved in decisions about their care and treatment)
Participants in clinical cancer trials have better outcomes than are reported in the population at large, but people from BAME groups are less likely to participate. Barriers to participation include:
Cultural factors (such as fear and cancer stigma).
Lack of knowledge regarding clinical trials.
Mistrust of the medical system.
In the UK, around 50% of those diagnosed with cancer will live for at least ten years after diagnosis but there are differences in survival rates between people from racially minoritised groups and white cancer patients. Macmillan 2017 report: “Mind the Gap” analysed results of the 2016 CPES survey for London, focusing on both deprivation and ethnicity and found was that cancer patients from all ethnic minority groups have poorer experiences than those who identify as white, on nearly all dimensions of care.
Black women in England are almost twice as likely to be diagnosed with advanced breast cancer as white women. Black women have significantly poorer survival from breast cancer at both one and three years since diagnosis than White women (85% compared with 91% at three years) (The Unsurvivors report - Breast Cancer Now). There is a higher proportion of Black women developing triple negative breast cancer—an aggressive form of the disease associated with poorer outcomes (Jack et al Our J Cancer 2013)
Support and mental health
Many of the ethnic minority patients felt that they had been unable to discuss anything with their GPs and hospital doctors beyond their immediate physical needs, and this included all forms of support. Some racially minoritised groups are also more likely than White people to suffer financially and psychologically as a result of a cancer diagnosis. National statistics suggest that black and ethnic minority communities are less likely access cancer support groups, and reported a lack of ease, ability or willingness to discuss their cancer with others due to the existence of stigma around cancer in their community.
Culturally sensitive support was missing with a lack of appropriate wigs, and skin coloured lymphodema sleeves and prostheses.
This is just a fraction of inequity and inequality that we are facing in the UK within cancer care. The independent NHS Race and Health Observatory was set up to examine these inequalities and advice departments on how they make cancer care more equitable. The current issues relate to
Structural racism within the healthcare system in the UK, and lack of individuals and organisations examining their inherent bias within this system to create change.
Inherent patriarchy and systems built to favour men leading to reduced listening and support for women and lack of training around women’s health issues.
Lack of inclusivity in the health & medical industry, e.g. lack of communication, translation and appropriate information, and clinical trial recruitment for and involving minority communities.
Lack of data collection for minority groups and poor review of data that is collected
If you would like to educate yourself on these topics, I have given several talks and hosted panel discussions sharing more on these health inequalities in cancer care.
Trekstock - Lifting the lid – where’s the data?
MyNutriweb _Diet and Breast cancer: reducing risk and addressing inequalities
WCRF – Racial disparities in diagnosis and treatment of cancer