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Summary
The month of October symbolises Breast Cancer Awareness Month. It advocates for equal access to improved treatments for breast cancer. This year’s theme emphasised inclusivity, yet Black women with breast cancer are excluded from clinical trials. This has indirectly contributed to the surge in the mortality rate of Black women living with breast cancer. This article examined how the underrepresentation of Black women in breast cancer clinical trials contradicts this year’s theme, their lives, and the purpose of Breast Cancer Awareness Month.
Every October, the world glimmers in pink. Streets are adorned with billboards featuring ribbons, hospitals display banners promising free screenings, and social media timelines are filled with hashtags of hope. It is the month of solidarity. It hums with campaigns urging women to check their breasts, fight, and survive. Early detection is emphasised, and awareness has become a ritual.
The 2025 Breast Cancer Awareness Month theme, “Every Story is Unique, Every Journey Matters,” reminds people that every woman’s experience with breast cancer is different and personal. It tells health workers to see patients beyond diagnosis. It advocates that every woman, regardless of race, status, or geography, should not be silenced or sidelined. It calls for the representation of every woman in the breast cancer narrative. Ultimately, it encourages inclusivity and drives change to improve the lives of those affected by breast cancer. The universal message seems all compassionate and embracing, but a disturbing question lies behind: “Whose stories are truly represented in the fight against breast cancer?
Breast cancer affects women across all races. Black women are likely to develop breast cancer at a younger age. They are diagnosed at a late stage, are twice as susceptible to triple-negative breast cancer (TNBC), and are 40% more likely to die from breast cancer than white women. Despite these high risks and increased mortality rate, Black women are sidelined in breast cancer clinical trials and treatments. A 2023 study revealed that only 7.2% of Black women were enrolled in breast cancer clinical trials, while only 3–5% eventually participated in the research. This exclusion means many of the new and improved treatments for breast cancer are primarily tested and meant for white women only. This left a critical gap in understanding how these same treatments can work for women of African descent. Moreover, it reveals a crack in this year’s theme and one of the core purposes of Breast Cancer Awareness month – access to improve healthcare and treatment. Other questions surface: are all women truly represented? Does every journey matter if every woman’s story remains untold?
Clinical Trials, Breast Cancer, and Black Women
Clinical trials are a type of medical research where new medicines or treatments are tested on people who volunteer to participate, allowing researchers to determine if they are safe and effective. This means new drugs, therapies, and medical approaches are developed and approved. Participants get access to advanced treatment, comprehensive and personalised care, and actively contribute to helping future patients. The researchers gain a deeper understanding of the disease, acquire diverse insights, and have structured data and evidence to support the scientific validation process, ensuring safety, effectiveness, and credibility. This is similar to presenting facts to the world to reveal the truth about an African myth.
Despite lots of advanced and improved breast cancer treatment, Black women are still heavily underrepresented in cancer clinical trials, even when they have a similar or higher risk of the type of cancer being studied. This underrepresentation means that new breast cancer treatments are made for specific groups of people; therefore, it does not represent the broader population of women with breast cancer, leading to limited access to quality healthcare, higher mortality rates among Black women, and. discrimination in access to treatment. Most importantly, it contradicts this year’s theme that emphasised inclusion and the need to recognise the diverse experiences of women with breast cancer, promoting quality healthcare for them. Even the purpose of the Breast Cancer Awareness Month – to advocate for improved access to quality healthcare and treatment is sidelined.
The majority of people assumed and believed that Black women missed out on clinical trials due to their historical mistrust, religious beliefs, socioeconomic status, and hard-to-reach syndrome. While some of these may be true, it can not be dismissed that these factors are not the main contributors to low Black women’s participation in clinical trials. In truth, more Black women are willing to participate. According to a 2023 GCI health survey, 80% of Black women are open to participating in breast cancer clinical trials. Yet, only 73% have never been asked to one because their doctors did not consider them an option, mostly due to discrimination, unconscious bias that assumes Black people are not interested in clinical trials, or they face too many obstacles to participate. Most of the Black women surveyed had a positive to neutral perception of clinical trials, and only 10% had a negative perception. Another study reveals that nearly half of Black women with metastatic breast cancer never receive information about clinical trial opportunities.
Generally, it’s the lack of information due to discrimination, racism, and not mistrust. That’s the biggest barrier to Black women’s participation in breast cancer clinical trials. This disparity in clinical participation is among the many reasons Black women have a high mortality rate of breast cancer. It’s interesting to know that the proclaimed Black women’s mistrust stemmed from the historical medical mistreatment of Blacks in the 1932 Tuskegee Syphilis Study. This was when 600 Black men from low-income families were used as test subjects for Syphilis without informed consent. Similarly, Anarcha, Lucy, and Betsy were used as surgical experiments for vesicovaginal fistula, a severe complication of obstructed childbirth. James Marion Sims operated on these women without anaesthesia. They went through unbearable pain and were discarded without compassion. Yet, they were not recognised for their contributions, and accolades went to perpetrators who caused them pain.
Aside from the several factors that contribute to low participation of Black women in breast cancer clinical trials, studies show that the trials are not offered in communities where Black women live. This is evident in Nigeria and many other African countries, where breast cancer clinical trials have never taken place. Underrepresentation of Black women in breast cancer clinical trials does not represent low participation only. It includes late diagnosis caused by delayed screening, fewer follow-up appointments, and limited access to specialised healthcare. Even the doctor is less likely to recommend advanced treatment or genetic testing to Black women compared to white women with similar symptoms. While this year’s theme emphasised on individuality and inclusion, it also expose the uncomfortable truth that Black women’s realities are statistically excluded from the science shaping future treatments, reveals the gap between the theme’s ideals and healthcare’s current reality, Black women data and experiences remain invisible in the progress toward cure and care, intentionally turn the awareness into a performance of equity rather than its practice. Systematic health inequity — new and improved breast cancer treatments remain less accessible or effective for Black women patients. In truth, it’s a form of systematic exclusion. It highlights the contradiction in current healthcare systems. When Black women’s experiences are consistently missing from data, medical guidelines, and narratives, then every journey is not recognised– some are being overlooked.
Inclusion of Black women, an Awareness necessity for Health Equity
When research ignores certain demographics, their treatment and survival are overlooked. Without data from Black women, treatment outcomes become less predictable for them. The goal of Breast Cancer Awareness Month goes beyond awareness and visibility. It’s an advocacy for access to improved healthcare. With the inclusion of Black women in research, the global campaign for breast cancer awareness becomes truly inclusive, the research findings become universally relevant, and mirror the diversity of the women it aims to serve. Black women’s participation in clinical research helps scientists better understand how conditions like breast cancer impact them.
This year’s theme, ‘Every Story is Unique, Every Journey Matters,’ finds meaning when Black women are truly represented in clinical trials, ensuring improved access to quality healthcare. When inclusion becomes the norm, the pink ribbon will finally fulfil the promise of equal access to hope and survival.
