By Janet Mosugu
Cancer is still a leading cause of death in the United States, with African Americans experiencing higher mortality rates from several types of cancers, including breast, lung, colorectal, and prostate cancer, than other populations, as highlighted in the AACR Cancer Disparities Progress Report 2024. And in addressing this, the focus is typically placed on the socioeconomic barriers, limited access to healthcare, and cultural perceptions about medicine that contribute to delays in cancer diagnosis, treatment, and support, while the profound stigma, fear, and misinformation surrounding the condition are often overlooked. To improve cancer outcomes among African Americans, collective, open, and honest communication, both within families and the broader African American community, is crucial to breaking the stigma and encouraging prevention, early detection, treatment, and emotional support for patients.
Negative Impacts of Cancer Stigma, Fear, and Misinformation
Cancer stigma, whether driven by fear, shame, or misunderstanding, often leads to delayed diagnosis and treatment of cancer. Many African Americans hold onto deep-rooted beliefs which can discourage proactive healthcare management like seeking screenings or discussing symptoms with health professionals. Moreso, in cultures where strength and resilience are valued, admitting illness or vulnerability can feel overwhelming, leading to an avoidance of the topic altogether.
Open dialogues about diseases like cancer may be seen as taboo, particularly in older generations, where cancer diagnosis is often met with silence or secrecy. This usually comes from a place of fear: fear of the unknown, fear of death, and fear of burdening family members with bad news. Fear of judgment related to misconceptions about the causes of cancer can also contribute to stigma. For example, some may believe that a cancer diagnosis is linked to past behaviors or lifestyles, furthering the shame associated with it. This discourages open conversation about critical health information, like hereditary risk factors necessitating early detection and prevention. The culture of silence often leads to negative effects, like delaying diagnosis and treatment, reducing emotional support, and eliciting feelings of isolation for those living with cancer.
The stigma surrounding cancer is also fueled by mistrust of the healthcare system, driven by historical events like the Tuskegee syphilis study, Henrietta Lacks (HeLa cells) research, and other discriminatory practices. Additionally, limited access to healthcare, lower awareness of cancer prevention and screening programs, and financial constraints compound the problem.
The Role of Advocacy and Education
Advocacy and education are vital to effectively destigmatize cancer. The AACR is a leading organization committed to advancing cancer health equity through education, research, and patient advocacy. Since 2020, the AACR has published the biennial AACR Cancer Disparities Progress Report to educate Congress and the public about the economic inequities, social injustices, and systemic barriers that have made African Americans and other marginalized groups more likely to develop and die from cancer.
And for over 25 years, the AACR Scientist
Survivor Program® has connected cancer survivors with scientists to learn about cancer research so that they are better equipped to advocate for themselves and others. One of the program’s participants, Desirée Walker, is an African American breast cancer survivor who was driven to patient advocacy by the knowledge that cancer is not openly discussed in the African American community.
“I realized it was important to get out there and tell my story,” she said. “I took it upon myself to address this stigma by not being silent.”
Open Communication Is Key
Beyond sharing credible information, open discussion of cancer topics helps to promote cultures of understanding, support, and hope. It helps to destigmatize the disease, encourages early detection, dispels myths and misinformation, and fosters health equity. Whether as patients, caregivers, friends, or other family members, when people share their experiences with cancer, they empower others to recognize that a cancer diagnosis is not the end of the road but a call to action for increased awareness and preventative care.
Culturally tailored messages and partnerships with trusted local community outreach organizations and patient advocacy groups can significantly enhance open dialogue about cancer among African Americans. Resources like the Black TNBC Sanctuary, created in collaboration with the AACR, provide safe spaces for African American individuals diagnosed with cancer.
By encouraging open conversations about cancer and providing culturally sensitive support, African Americans can be empowered with the right information to contribute to reducing cancer disparities and improving cancer outcomes within their communities. Rather than viewing it as a death sentence, cancer diagnosis should be seen as a challenge that can be tackled with the right tools, knowledge, and community support. It’s time to break the stigma, one conversation at a time.
Janet Mosugu received her Master of Science degree in Communication for Development and Social Change at the Temple University’s Klein College of Media and Communication, specializing in Health Communication. She was the first recipient of the Margaret Foti Scholarship Fund, and is currently interning at the AACR, where she is working on the planning and implementation of an anticancer education and awareness campaign initiative for diverse populations through community-centered, inclusive, and culturally tailored approaches.
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