*Patient’s name has been changed
In room A is Tonya*, a 41-year-old African-American woman with metastatic breast cancer. In Room B is Joseph*, a 39-year-old Asian male with advanced colon cancer. As an oncologist who specializes in cancer genetics, I regularly see young patients from diverse racial and ethnic backgrounds — such as Tonya and Joseph — who have advanced cancers. I seek to better understand the cause of their cancer development and help inform options for treatment. Every time I walk into these rooms, I wonder: could these late-stage cancers have been prevented?
In my opinion, one of the greatest advances in oncology has been the discovery of cancer genes that can provide information about hereditary cancer risk and guide cancer screening and treatment. Indeed, 5-15% of patients with cancer have inherited genetic mutations. Let’s put this in context. The American Cancer Society estimates that over 1.9 million new cancer cases are expected to be diagnosed in the U.S. in 2023; this equates to hundreds of thousands of people with a hereditary basis for cancer risk. Furthermore, cancer-related mortality rates are consistently higher across multiple cancer types for people of color. Although national guidelines address which individuals to consider for genetic testing and how genetic results can guide cancer screening, there is a large disparity in who seeks out and receives these screenings. How can we better reach communities of color with genetics information?
In 2013, a dramatic rise in the uptake of BRCA testing was reported when Angelina Jolie went public with her own experience of identification of a BRCA1 mutation and decision to pursue double mastectomy. Jolie had a strong family history of cancer: her mother died from breast and ovarian cancers, which also affected her grandmother and aunt. In the weeks following the popularly termed “Angelina Jolie Effect,” there was a 64% increase in genetic testing with a 2.5-fold increase in referrals to breast cancer genetics clinics globally. In spite of this increased interest in genetic testing, in the years since there remains significant under-engagement of people of color in cancer genetics programs or in genetic studies. As a result, people of color have derived limited benefit from the possibility of having genetic information to guide cancer screening towards better cancer outcomes.
A few possible reasons for this disparity include the low public visibility of people of color raising awareness about cancer risk information; heightened stigma regarding cancer in certain populations; and the challenge of building trust.
Now is the time for us to create a cadre of local heroes in communities of color in the fight against cancer. They can also leverage the power of cancer awareness months throughout the year to support outreach. Specifically, September is Prostate Cancer Awareness Month, October is Breast Cancer Awareness Month, and March is Colorectal Cancer Awareness Month — all cancers where genetic testing may be beneficial to guide cancer screening strategies. Communities of all racial and ethnic backgrounds have mayors, councilmen and councilwomen, teachers, pastors, firefighters, law enforcement members, and of course, health professionals who can be trained and guided to be trusted agents of vital health information delivery. When it comes to cancer risk, it is essential to convey the importance of family history awareness and the potential benefits of genetic testing.
Revisiting my patients Tonya and Joseph, such information was not available to them. Tonya did not realize she was at risk for breast cancer at a young age even though her mother died of breast cancer at age 45 and her brother had been diagnosed with prostate cancer at age 50 (both of which are more common in individuals with BRCA mutations). This information could have led Tonya to seek out genetic testing and begin breast cancer screening starting in her 20s, quite possibly preventing a diagnosis of metastatic disease at age 41. Joseph did not know how a family history of colon cancer can prompt earlier colonoscopy screening. His brother in Taiwan had been diagnosed with colon cancer at age 40. Based on this family history, Joseph should have been recommended to start colonoscopies at age 30, which could have led to the detection of his colon cancer at a more easily treatable stage. What if they had received this vital information from community messengers they could relate to and trust? Increasing public awareness about cancer risk and genetic testing is essential to reduce the burden of cancer, and diversifying public voices backed by scientifically-valid information is a compelling, and potentially life-saving, strategy.
Sure, there are many other barriers and challenges to overcome. The healthcare system is complex and cumbersome. Access to healthcare itself can be difficult, particularly for those who are uninsured or underinsured. For these individuals, genetic testing may uncover cancer risks, which then cannot be adequately addressed due to financial hardship. These issues must be addressed at the local, state, and national levels with patient-centered policies. But there is an urgency now to reach more people of color with information about cancer risk and genetic testing. Trusted community members and health professionals should be the ones to deliver it. It’s time to take the promise of the “Angelina Jolie Effect” and see it materialize in our communities of color. This could be the “Teacher Sanchez Effect” or the “Firefighter James Effect” or the “Councilwoman Patel Effect” — the “Local Heroes Effect” to overcome cancer disparities.
Veda N. Giri, MD, is a medical oncologist who specializes in clinical cancer genetics at Yale Cancer Center and Yale School of Medicine in New Haven, Connecticut. She is the director of the Cancer Genetics and Prevention Program and director of the Early Onset Cancer Program at Yale Cancer Center and Smilow Cancer Hospital, and a public voices fellow with the OpEd Project.