Experts are emphasising the need for increased participation of black, Asian, and ethnic minority individuals in breast cancer trials, highlighting their historical underrepresentation in prior studies. There exists a widespread misconception that black women are less affected by breast cancer, erroneously leading to the belief that cancer primarily affects white individuals.
In response to this issue, the NHS Race and Health Observatory, in collaboration with Macmillan Cancer Support and supported by Roche, has launched a campaign to enhance diversity in breast cancer clinical trials.
The initiative aims to raise awareness about the lack of diversity in clinical studies, improve communication, and provide long-term support to patients. Specialist nurses will be stationed at two major cancer centres, Bart’s Health NHS Trust in London and The Christie NHS Foundation Trust in Manchester, to assist patients throughout the trial process. This effort also includes the inclusion of the 1% of breast cancer patients who are men in the UK.
The NHS Race and Health Observatory acknowledges several obstacles related to the recruitment, communication, and retention of black, Asian, and ethnic minority patients in clinical trials, underscoring their underrepresentation in various studies. The Caribbean African Health Network attributes this underrepresentation to a historical sense of mistrust and disengagement in research within the black community.
Medical professionals advocate for research that aligns with the patient population they encounter in clinical practice. However, previous research has shown that black women face a higher risk of mortality from breast cancer compared to their white counterparts. Additionally, they are more likely to develop aggressive forms of cancer and receive diagnoses at advanced stages.
Dr Habib Naqvi, CEO of the NHS Race and Health Observatory, expressed commitment to ensuring inclusion and representation in future breast cancer trials through culturally sensitive interventions and communications. Dr Habib Naqvi, said: “We believe that when targeted, culturally sensitive interventions and communications are put in place, under-represented groups can be successfully recruited into clinical trials.” He added: “There is a broad misperception that black women don’t suffer as much from breast cancer or it does not run in their family history. This can result in the perception that cancer is a white person’s disease.“We want this pilot to encourage women at risk, those already diagnosed and individuals undergoing post-treatment to come forward and share their experiences and get the information needed.”
Professor Richard Simcock, Chief Medical Officer at Macmillan Cancer Support, stressed the importance of research relevance to clinical practice, historically an issue. Professor Simcock added: “As a Breast Cancer Oncologist I want to know that research is relevant to the people we see in clinic. Historically that has not been the case. I’m delighted that Macmillan can support this project to ensure that future evidence from clinical trials is representative and inclusive.”
Clinical trial at The Christie NHS Foundation Trust clears patient of cancer
Jasmin David, a 51-year-old mother of two from Fallowfield in Manchester, received devastating news when her aggressive triple-negative breast cancer metastasized, giving her less than a year to live. After initial chemotherapy, a mastectomy, and radiation therapy in 2018, the cancer returned in 2019 with a poor prognosis. In a last-ditch effort, Jasmin joined a phase I clinical trial in December 2019 at the National Institute for Health and Care Research in Manchester, receiving an experimental medicine combined with Atezolizumab, an immunotherapy drug. Initially experiencing severe side effects, she persevered, and by June 2021, scans showed no measurable cancer cells in her body. Jasmin now enjoys life with her family and looks forward to celebrating her 25th wedding anniversary in September 2023. Her faith and the support of loved ones helped her through this challenging journey, and she plans to retire early and live her life with gratitude to God and medical science. She will continue treatment until December 2023.
How the NHS safeguards women
Each year, over two million women in the UK undergo breast screening, potentially saving 1,300 lives by detecting and treating cancers earlier. In the 2020/21 period, 120,000 people in London participated in breast screening, leading to the detection of 1,040 cancers that might have gone unnoticed.
Sanjeet Johal, the Breast Screening Recovery Programme Director for the NHS in London, emphasised that breast cancer is prevalent in the UK, with increased risk as women age. Women between 50 and 71 are automatically invited every three years for screening, and it's crucial not to delay these appointments as early detection enhances treatment success.
Dr Saliha Mahmood Ahmed introduced "The Bread Exam," a visual guide for women to check their breasts for changes. This guide aims to make self-checking more comfortable and encourages women to consult their GP if they notice anything unusual.
Furthermore, a blog by Dr Ruw Abeyratne and Khudeja Amer-Sharif highlights health disparities in ethnic minorities and emphasises the importance of addressing healthcare inequities through authentic partnerships and health literacy initiatives.
Mita, a participant at the Shama Women's Centre in Leicester, initially discarded a bowel cancer screening kit received by mail due to uncertainty. However, our 'Access to Cancer Services' workshop provided trusted information in a safe environment, motivating her to order a new kit and share this knowledge with the community. This illustrates the distinction between equality and equity in healthcare access. While we strive for equality by providing everyone with screening kits, disparities in trust, knowledge, and confidence hinder utilisation.
The Shama Women’s Centre in Leicester is actively working with the NHS to reduce health inequalities among deprived populations, particularly focusing on minority ethnic communities. Leicester's cultural diversity underscores the necessity of recognising and acting upon the intersections of deprivation, ethnicity, gender, and disability in healthcare access. True collaboration and co-production with communities are essential to dismantle systemic barriers and promote equitable healthcare experiences and outcomes.
Having the tests does not mean that you have cancer
ABPL Group held a special virtual event to mark Ethnic Minorities Cancer Awareness Month and discuss Breast Cancer Awareness.
Dr Toral Gathani a Senior Clinical Research Fellow in the Cancer Epidemiology Unit of the Nuffield Department of Population Health said, “Breast cancer is common among ethnic minority women. Even though Indian women are less likely to get breast cancer compared to white women, it is still the most common cancer that is diagnosed in Indian women in the UK. The most common problem is a lump. If you feel that there is a lump in either breast or under the arm then it's important that you seek help for that. The other issues can be changes to the nipple, either there is a discharge which can either be clear or with blood or sometimes the nipple can become inverted or have an ulcer for which you need to see a doctor.”
Data from Breast Cancer UK shared with the newsweekly highlights significant breast cancer discrepancies among ethnic groups in the UK. While breast cancer is more prevalent in White women compared to South Asian, Chinese, Black Caribbean, and Black African women, ethnic minority groups, especially Black Caribbean, Black African, Indian, and Pakistani women, face a higher risk of being diagnosed with breast cancer at later, more aggressive stages that are challenging to treat. These disparities are more pronounced in older age groups and among Black ethnicities.
Multiple factors contribute to these differences, including socioeconomic disparities, lower participation in mammographic screening, advanced tumour stages, biologically aggressive tumours, and a higher incidence of triple-negative breast cancer among Black women. Recent data from England (2013-2017) reveals age-standardized rates per 100,000 population: White UK females: 162, Asian females: 116, Black females: 132, and Mixed/Multiple ethnicity females: 102. Overall, ethnic minority women bear a greater risk of breast cancer with less favourable characteristics, particularly in older age groups and among Black ethnicities.
Studies in the UK have demonstrated that young Black women with breast cancer experience poorer outcomes compared to their White and Asian counterparts, with lower short-term survival rates. These disparities stem from a combination of factors, including socioeconomic status, reduced participation in mammographic screening, advanced tumour stages, biologically aggressive tumours, and a higher prevalence of triple-negative breast cancer. Additionally, limited awareness of breast cancer may contribute to increased mortality rates among these populations.
The way forward
It’s important to work with individuals and communities to understand the barriers that affect them and find the approaches that are effective. It’s important that any approaches are aimed at supporting people to make an informed choice and not doing anything that might make them feel pressured to take up screening if they don’t want to.
Dr Laura Marlow, Senior Research Fellow at King’s College London concludes, “I don’t think it’s a one-size-fits-all approach either. It might be a case of reaching out to different community groups and working with those communities to develop something that will work for that community on a local level.” For example, Marlow is involved in a study to improve screening participation amongst Muslim women.
However, it’s also not the job of local communities and groups themselves to inform people about screening and remove barriers. It’s up to the Government, the NHS, local authorities, and other services to ensure that the information reaches those who need it and ensure that good practice and ideas are shared to help reduce inequalities across the different areas and services.
