The panel at the FDA OCE 4th Annual National Black Family Cancer Awareness Week, Engaging the Generations Conversation on Cancer, forum, explores family and faith in cancer care.
This is the second blog post on the 4th Annual National Black Family Cancer Awareness Week, Engaging the Generations Conversation on Cancer public panel discussion. This event was held virtually on Thursday, June 13, as part of the FDA's #BlackFamCan campaign. Read the first one here.
To conclude a compelling discussion, the panel at the US Food and Drug Administration (FDA) Oncology Center of Excellence (OCE) 4th Annual National Black Family Cancer Awareness Week, Engaging the Generations Conversation on Cancer, forum, centered their conversation on the importance of family and faith.
As mentioned in the event's opening remarks, the family unit plays a critical role in the cancer care discussions, from diagnosis, treatment, and inclusion in clinical trials. Richard Pazdur, MD, director, OCE, FDA, highlighted the difficulty patients face whilst trying to absorb the complex information they receive from their providers. According to Dr. Pazdur, having family members present to listen, participate, and ask questions can take some of the burden off the patient.
“For many Black Americans, they make important decisions—such as whether or not to participate in a clinical trial—as a family unit, so it is key to have their relatives present during conversations with their provider to ensure everyone is as informed as possible,” Dr. Pazdur said. “Ultimately, it is the individual’s decision to make, but very rarely do people make it alone, without having discussed this with multiple members of their family.”
The panel's moderator, Rea Blakey, then posed the question of what the multidisciplinary cancer care team can do to encourage families and communities to participate in #BlackFamCan Week. Charlene Le Fauve, PhD, MA, inaugural senior advisor for Health Equity, FDA Center for Tobacco Products, highlighted the importance of fixtures in Black communities like churches and barber shops that serve as focal points of social interaction. She then discussed an initiative from the National Institutes of Health (NIH) that allows communities to drive research agendas. “We get focus groups and draw upon people from the community as we develop our educational outreach and our campaign messages to educate, motivate, and inspire people to change their behavior,” Dr. Le Fauve said.
Brenda Adjei, associate director, Office of Healthcare Delivery and Equity Research at the National Cancer Institute Center for Cancer Research, echoed the importance of researchers and clinicians garnering community input as this facilitates an understanding of important community values. “It’s so important to ensure that the lived experience is brought to bear. We may have these grandiose research questions, but they may not have relevance to the community,” she said.
Family members can also impart life-saving information by sharing family disease history. Otis Brawley, MD, medical oncologist and epidemiologist, Johns Hopkins Medicine, emphasized the importance of women knowing their family history of cancer. This is because understanding their risk for a disease like breast cancer, would necessitate earlier screening that could lead to early detection.
Richard Ginyard, former chair of the board of directors for Zero the End of Prostate Cancer and founder of Building Generation Health, agreed with the need for families to talk about their health, both mental and physical. He recalled his own experience of his father and brother both being reluctant to share with their families that they had been diagnosed with prostate cancer and lung cancer, respectively. Ginyard acknowledged that this reticence to disclose their health conditions could be a generational divide, coupled with a desire not to burden their loved ones. He noted the same pattern with mental illness as well, stating that his experience growing up was to keep any and all mental health issues on the inside.
Laura Crandon, founder and president of Touch 4 Life, also spoke to the deadly consequences of families not discussing mental and physical health conditions. “The silence is killing us. We cannot keep silent about what runs in our families. We have to normalize it,” she said. “We talk about handing down recipes, handing down advice, handing down property…Health should be a black family business.”
In many Black families and communities, faith plays a role in cancer diagnosis and treatment as well. As a pediatric cancer survivor, Adjei relayed her mother’s experience as a recent immigrant to the US from Ghana while caring for a young child with cancer. Luckily, she had the support of a community of African women praying for her and her child, helping her through such a difficult period in her life.
Adjei went on to point out that patients often try to protect their family members and save them from suffering by not talking about their diagnosis. But the reality is that relatives want to be there for their loved ones and support them, and do not see it as a burden to do so. “The mental health around trying to protect someone else makes us suffer more,” said Adjei. “For some reason as adults, it’s hard to move beyond that, but we have to do better because the silence is isolating us.”
The convergence of faith and cancer resonated with Ginyard as well, as he started to question his faith when he received his diagnosis. He knew seeking medical attention was crucial for him, but at the same time wondered, “If I’m a believer, do I even need medical treatment?”
Crandon echoed this sentiment, saying that many patients have a similar experience to Ginyard. She articulated that religion comes up frequently in her conversations with community members about cancer diagnosis and treatment, and that many people want to rely on prayer and faith alone to cure their cancer. “If you broke your arm or had a rotting tooth, you would seek medical attention,” said Crandon. “Faith is not the enemy of science. They go together.” Her experiences underscore the need for providers to truly engage with their communities and commit to educating them about life-saving treatment.
To close out the panel discussion, Blakey brought the conversation back to the need to overcome the stigmas that exist around talking about physical and mental health in Black communities. Dr. Le Fauve weighed in on how these stigmas are related to discriminatory practices and bias in the American medical and mental health system. “People don’t want to disclose vulnerabilities because they have been neglected, misdiagnosed, or assumed not to have pain,” she explained. “Our system is built in a way that perpetuates the fears people have because they’ve personally experienced it themselves or know someone who has.”
These microaggressions all contribute to people not feeling safe to talk about a disease that disproportionately impacts their community. It also demonstrates the need for meaningful community engagement on the part of health care providers, so that community members feel seen and are willing to seek the medical attention they need.
Understanding this, Association of Cancer Care Centers (ACCC) president, Nadine J. Barrett, PhD, MA, MS, senior associate dean for Community Engagement and Equity in Research at the Wake Forest University School of Medicine and Atrium Health, centered her President’s Theme on Reimagining Community Engagement and Equity in Cancer. Through her theme, Dr. Barrett aims to recognize the value of building relationships in the community to advance health equity. Her theme serves as a reminder of the value of listening to and appreciating the patient experience, while elevating their voices in the community.
Rachel Radwan is an editorial coordinator at the Association of Cancer Care Centers (ACCC).
