Willie Bell has never missed an appointment to screen for prostate cancer in nearly 44 years. Then the pandemic struck. The office of the psychiatrist was closed. Before he could be evaluated in January 2021, three months had passed.
“Therefore, the doctor kept postponing it, and I called him to inform him that I have my PSA level tested annually. I would be furious if you told me that you backed off for a year and then discovered that you had cancer,'” said Bell, a 66-year-old retired Miami police officer.
When Bell’s physician eventually returned to him, he had bad news. Bell was furious.
Bell recalls informing his doctor, “We could have caught this in October of last year.”
Bell knew from a young age, due to cancer awareness events at his college and screening initiatives at the police station where he worked, that Black men are disproportionately affected by prostate cancer because they tend to have more dangerous and aggressive forms of the disease. And it frightened him.
He was terrified because he believed it was a death sentence at the moment. He was also aware that his prostate-specific antigen (PSA) levels had reached seven, eight, and nine out of ten throughout his entire existence.
Blood tests can detect PSA levels in order to screen for prostate cancer. Patients with a PSA between 4 and 10 have a 25% chance of having cancer, while patients with a PSA over 10 have a greater than 50% risk.
When Bell was diagnosed with prostate cancer in 2021, he opted to have his prostate removed. He accomplished this at the Sylvester Comprehensive Cancer Center of the University of Miami School of Medicine. Bell volunteered for the African Cancer Genome Registry soon after his surgery.
Researchers at the Sylvester Center are collaborating with national and international institutions to determine why Black men and women have a greater risk of developing aggressive prostate or breast cancer and dying from it.
This began with the recruitment of 200 individuals at locations in Miami, Philadelphia, Alabama, and Baltimore, followed by the recruitment of 1,800 individuals at locations in the Caribbean nations of the Bahamas, Barbados, Haiti, Jamaica, and Trinidad and Tobago.
The researchers, who are a part of the African Caribbean Cancer Consortium, plan to recruit more cancer survivors from Benin, Burkina Faso, Kenya, and Namibia.
Since recruitment began in December, the registry has reached a total of 500 individuals; however, this will ultimately be the largest study of its kind, according to Sophia George, one of the principal investigators in charge of the African Cancer Genome Registry. In the future, tens of thousands of participants are desired.
According to the American Cancer Society, breast cancer is the most prevalent cancer among women in the United States, excluding skin cancers, and its incidence is rising among Black women.
Black women are 41% more likely than white women to die from breast cancer. Similarly, prostate cancer is the second-highest cause of cancer death among Black men in the United States, after lung cancer. Cancers of the breast and prostate are the primary causes of death in the Caribbean and Africa.
According to George, these rates are driven by factors that are poorly understood.
Willie Bell joined the African Malignancy Genome Registry after the early detection of his malignancy. Courtesy of Wendell Bell
George, a breast cancer researcher at Sylvester Center, stated, “First of all, we’ve been chronically understudied for so long.” There is currently a movement to investigate populations with a greater disease burden in a more deliberate manner.
George and co-primary investigator Camille Ragin, a prostate cancer researcher from the Fox Chase Cancer Center in Philadelphia, are collecting blood, saliva, and other tissue samples from tumors to examine genetic factors as well as socioeconomic and lifestyle influences on the disease.
Using tumor samples, researchers will sequence the entire genome in order to identify germline genetic determinants and determine cancer susceptibility. Researchers will also send questionnaires to cancer survivors who are participating in the study.
According to George, the long-term objective is to pose questions about where people are born and to compare and contrast the diagnosed tumor types. “We’ve studied Haitian women living in Haiti, Haitian women living in Miami, and African Americans, and we see both differences and similarities in the types of tumors that are diagnosed,” George explained.
For instance, in a 2021 study published on the genetics of breast cancer, George discovered variations in the categories of mutations among Caribbean women. Although 5% to 10% of patients in the United States and Western Europe have a variant in the BRCA1 and BRCA2 genes, this incidence increased to approximately 14% in West Africa. Researchers discovered that 23 percent of patients in the Bahamas carried a variant of their cancer-causing genes.
George and her coworkers were left with more questions than answers. Is there another component besides these genetic variants? “This is the subject of this study, both in terms of breast and prostate cancer,” stated George.
She added that the registry will attempt to answer concerns regarding the genetic differences and similarities between different populations, as well as how environmental factors, such as diet and BMI, may influence the incidence of cancer, particularly in young Black people.
George told STAT that ultimately, studying more individuals could help clinicians provide preventative care to underserved populations with greater intention. It could also contribute to the development of targeted therapies and treatments to combat more aggressive cancers.
Pfizer’s Institute of Translational Equitable Medicine is collaborating with the African Caribbean Cancer Consortium on the study, but the registry intends to seek funding from a variety of sources in the future, according to George.
Certainly, this is not the first study to focus on the disproportionate incidence of cancer among Black participants. Wei Zheng, an epidemiologist and professor of medicine at Vanderbilt University Medical Center, directed the Southern Community Cohort Study, one of the largest efforts to examine lifestyle factors and biomarkers associated with the risk of breast cancer and other chronic diseases in African Americans.
The African Caribbean Cancer Consortium is not affiliated with Zheng. Zheng stated that obtaining Black Americans’ participation in medical research can be difficult at times.
“Black Americans are less likely to participate in a study,” Zheng explained, so recruiting participants was a major focus of this study. In the end, 86,000 individuals participated, approximately 67% of whom were Black. However, this is not typical.
Another study conducted by Zheng, focusing on African Americans, had only 40,000 participants, of whom nearly 20,000 were diagnosed with breast cancer.
The remainder did not have malignancies and served as a control group. This pales in comparison to large studies focusing on individuals of European ancestry, according to Zheng, which typically include more than 100,000 breast cancer patients.
Due to the barriers they face and the documented history of exploitation and harm, it is often difficult for researchers to recruit more racial and ethnic minorities, particularly African Americans, to participate in clinical trials.
According to the American Association for Cancer Research, additional barriers include a lack of health literacy, a lack of awareness of clinical trials, and financial obstacles, such as a lack of health insurance.
Franklin Huang, an oncologist, and researcher at the University of California, San Francisco, remarked, “There is still some mistrust and work to be done with our communities to help them understand why we do research and why we may collect samples from them.
Huang, who is also not involved with the registry, is one of the principal investigators of RESPOND, the largest U.S. study concentrating on African American men with prostate cancer. According to him, the fact that the majority of research is conducted at well-resourced academic medical centers that do not typically serve underrepresented populations is an additional barrier to obtaining more diverse results.
George, associate director of diversity, equity, and inclusion at the Sylvester Center, stated that a diverse workforce is advantageous.
Charinus Johnson-Davis was among the first individuals to register for the registry. Courtesy Charinus Johnson-Davis is a successful businessman.
Charinus Johnson-Davis, a 48-year-old breast cancer survivor and one of the first individuals, along with Bell, to sign up for the registry, stated, “The doctors and staff are so supportive, and that really does help.
Johnson-Davis, who resides in Florida, was diagnosed with breast cancer at the age of 36 and has a familial history of the disease; her grandmother and her grandmother’s sisters died from the disease, but her mother’s generation was spared.
She was able to enroll in the study by scanning a QR code at her oncologist’s office. Within 24 to 48 hours, individuals from the registry contacted her.
Both Johnson-Davis and Bell stated that, due to their positive experiences with the University of Miami, they encourage others to get screened and inform cancer survivors about the ongoing research in an effort to recruit more participants.
Johnson-Davis stated, “I believe we must continue to show people through research and medication how they are thriving, as well as continue to get people tested and have the conversation.
We weren’t having those conversations with our younger girls and boys, especially in the Black community, but I believe we’re having them more often now, especially with our younger girls and boys.
George adds that other patients may not feel comfortable providing tissue samples or answering certain questions on their questionnaires, but they sometimes change their minds after the physicians participating in the study have adequately addressed their concerns.
This is particularly essential for patients whose native tongue is not English. Materials and forms are available to participants in English, Haitian Creole, French, and Spanish in the United States and the Caribbean.
The first phase of the research is anticipated to be completed by spring 2024. Both of the experts who spoke with STAT expressed a willingness to collaborate with the African Caribbean Cancer Consortium to acquire additional data.
Johnson-Davis, who has a 10-year-old niece, stated, “Therefore, it’s all about paying it forward, focusing on the future, and trying to find a cure for cancer.” “That’s the crux of the matter.”