In our five-part series on Making Black Lives Matter In Health Care, we seek to uncover facts and share insights on the racial disparities impacting health, with a particular focus on the role of genetics and genomics. By bringing light to these issues, we hope to be a part of the solution to address these inequities and improve health outcomes for all. Today, Feb. 4, is World Cancer Day, and we would like to acknowledge it by highlighting how systemic racism impacts people with cancer.
Among the many tragedies that the Black community experienced last year was the death of actor Chadwick Boseman. Mr. Boseman was most well-known for bringing the iconic title character of the movie “Black Panther” to the silver screen. The film was lauded as being exceptional and essential for its portrayal of the power of an advanced and complex Black civilization and the importance of that representation. “The Revolutionary Power Of Black Panther” was examined by Time and others for its cultural importance, and the impact was crystal clear when we saw the viral joy and excitement of Black children when they learned they would get to see the superhero that they had been waiting for. During Mr. Boseman’s extensive but abbreviated career, he portrayed fellow barrier-breakers such as Jackie Robinson in “42,” Thurgood Marshall in “Marshall,” and James Brown in “Get On Up.”
The shock of Mr. Boseman’s death was not only due to his young age (43), but also because he had been fighting a diagnosis of colon cancer for four years without the public knowing. He was diagnosed with stage III colon cancer in 2016 that eventually spread throughout his body, and he had “countless surgeries and chemotherapy”. He did not make his illness public and continuing to film outstanding performances. And suddenly, in late August 2020, the same children who were dancing gleefully at the thought of seeing King T’Challa in the theaters only two years prior were mourning his passing.
As the shock of his death faded, important questions arose. How did this young man have colon cancer? Why was it detected so late? And did the medical system that has failed so many Black men and women fail Mr. Boseman, too?
Details about the course of Mr. Boseman’s cancer, his family history and his medical care have not been made public, so these questions are impossible to answer. But there is no question that there are racial disparities when it comes to the prevention, diagnosis and treatment of colon cancer. As Rebecca L. Siegel, the scientific director of surveillance research at the American Cancer Society, stated in a New York Times article about early-onset colon cancer, “African-Americans are 40 percent more likely to die from colorectal cancer. It’s because of later-stage diagnosis, it’s because of systemic racism and all that this population has been dealing with for hundreds of years.”
The higher rate of death from colon cancer impacting African Americans is not an outlier. In the U.S., the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Program collects data on all things cancer related. They have found that:
- Black women are more likely to die of breast cancer than white women, even though they get breast cancer at the same rates
- Black men are twice as likely to die of prostate cancer compared to white men
- Black and Hispanic/Latinx women have the highest rates of cervical cancer, and Black/African-American women have the highest rates of death from the disease.
So what aspects of systemic racism might impact the ability of Black patients to access quality screening, get a diagnosis of, or receive treatment for cancer? The reality is that there are impacts across the entire experience for Black patients with cancer. A 2019 report in the New England Journal of Medicine featuring the story of a Black woman with breast cancer in Chicago highlights that many hospitals serving a higher population of Black patients don’t have Commission on Cancer Center designations, which help set standards for quality of care. This has an impact on access to quality screening and interpretation of breast imaging like mammography, leading to missed cancer diagnoses. Because of the high correlation between race and geography, there is no question that where you live literally puts your life at risk.
Additionally, it is well-known in health care that the introduction of new technologies is more likely to widen disparities in care, rather than narrow them. As Genome Medical is a genetics company, we’ll focus on access to genetic and genomic testing. A 2016 article, whose authors included Genome Medical Scientific Advisory Board member and hereditary cancer expert Heather Hampel, assessed this issue and noted that Black women were less likely than white women to receive genetic counseling or genetic testing for breast cancer, even when they had a personal diagnosis of early-onset breast cancer. Additionally, physicians are less likely to refer patients for genetic services when they have patients who are mostly from marginalized groups. This bias may be tied to their perceptions about ability to pay -- even though many insurance companies cover the cost of hereditary cancer testing for people with a strong personal and/or family history, and many labs have financial support for those who may need it. There may also be assumptions about whether these individuals will pursue testing -- even though there is evidence that non-white patients are equally likely to pursue testing as white patients.
Finally, there is a well-described bias when it comes to disbelieving Black patients, particularly involving reported symptoms and pain. A 2016 study specifically assessed how bias impacts pain management. They found that multiple misconceptions that persist in the general population are also seen in medical professionals, including the belief that Black people have “thicker skin” and “less sensitive nerve endings”. More importantly, when medical professionals had more of these biased beliefs, they were more likely to assign lower pain ratings to Black patients and change their treatment recommendations.
In addition to addressing the systemic issues that limit access to high-quality testing, clinicians need to examine their biases. One way to do that is with the Implicit Association Test, which is available online. We can ask patients to speak up and to advocate for themselves, but we need to acknowledge our biases, set them aside and listen when they do. We’ll likely never know if systemic bias impacted Chadwick Boseman’s care -- but we all have a duty to keep it from impacting the life of anyone else.
Check out additional resources from Genome Medical and other organizations below.
Resources for Black people with or at risk for cancer
The Endometrial Cancer Action Network for African Americans (ECANA) is a patient support and education network established to remove inequities in gynecological cancers/reproductive care experienced by African Americans in this country. The group was established by physicians, community advocates, patients and survivors. The ECANA site provides educational resources as well as stories from community members.
Candace Henly is a Black woman who has Lynch syndrome, a hereditary cancer syndrome that increases the risk for colon, uterine, ovarian and other cancers. Her foundation, The Blue Hat Foundation, supports education and access to free screening for underserved communities.
Erika Stallings is a young Black woman who has a BRCA2 mutation and had preventive mastectomies to reduce her risk. She is dedicated to improving awareness and access for genetic testing in the Black community. Follow her on Twitter and read her Opinion piece in the New York Times, “Beyoncé’s Dad Has a Mutation More African-Americans Should Be Tested For”, and other articles on her website.
Read the first two installments of this blog series, Making Black Lives Matter In Health Care: First in a Five-Part Series and Racism in Pregnancy and Childbearing: A Path to Equal Reproductive Rights.
Learn more about Genome Medical’s commitment to being a Force for Good and how we are taking action, speaking out, and serving as agents for change to actively dismantle social injustice, systemic racism and inequality.
Follow us on Twitter @GenomeMed to get the latest updates on the series.