Engaging the Generations Through #BlackFamCan

This is the first 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.

In recognition of the 4^th Annual National Black Family Cancer Awareness Week (June 13 to 19), the US Food and Drug Administration (FDA) Oncology Center of Excellence (OCE) hosted a Conversation on Cancer public panel discussion on Thursday, June 13, with a focus on engaging future generations of Black Americans. The panel's moderator, Rea Blakey, associate director, External Outreach and Engagement, OCE, FDA, introduced Richard Pazdur, MD, director, OCE, FDA, as the first panelist. Dr. Pazdur gave opening remarks that highlighted the essential, supportive role family members play throughout the cancer journey. “If you ask anyone what the most important thing in their lives is, they will always say family,” he said. “The most important people that we turn to for information are our family members.” According to Dr. Pazdur, it is crucial that families are provided with current, correct information about cancer awareness, screening, and treatment at every stage, so they can best support a loved one diagnosed with cancer.

To complete the panel, Blakey introduced: Brenda Adjei, associate director, Office of Healthcare Delivery and Equity Research at the National Cancer Institute Center for Cancer Research; Otis Brawley, MD, medical oncologist and epidemiologist, Johns Hopkins Medicine; Laura Crandon, founder and president of Touch 4 Life; Robert Ginyard, former chair of the board of directors for Zero the End of Prostate Cancer, founder of Building Generation Health; and Charlene Le Fauve, PhD, MA, inaugural senior advisor for Health Equity, FDA Center for Tobacco Products.

Tobacco + Cancer

The first topic of the panel discussion concerned the FDA’s proposed ban on menthol cigarettes and flavored cigars. Dr. Le Fauve explained in detail the disparities that exist regarding tobacco use in Black communities compared to White communities in the United States due to the sale and marketing methods of tobacco companies. According to Dr. Le Fauve, these strategies can be traced back to the 1950s when they began branding menthol cigarettes for Black Americans.

“Companies placed billboards predominantly in Black neighborhoods, while street bands distributed millions of free [cigarette] packets at jazz festivals and advertisements were placed in the newspapers and magazines prevalent in Black communities,” Dr. Le Fauve said. “Even now, Black youth are more likely than White youth to see and recognize menthol cigarette advertisements and begin smoking.”

Dr. Le Fauve shared figures she believes demonstrates the results of decades of targeted marketing:

• Tobacco use is responsible for about 30% of all cancer deaths but is the number one cause of preventable deaths among Black people in the US.
• Between 1999 and 2018, secondhand smoke exposure in the US declined significantly for White children and Hispanic children, but not at all for Black children.
• 85% of Black Americans who smoke use menthol cigarettes, compared to 30% of White Americans who smoke.
• More than 72,000 Black people in the US are diagnosed with tobacco-related cancer and more than 39,000 of them die from tobacco-related cancer. 

“The FDA is doing a lot of work to regulate tobacco products to improve the public health, save lives, and regulate the manufacturing, distribution, and wholesale of tobacco,” Dr. Le Fauve explained. “But the work is not always equitable.”

Dr. Brawley added that menthol combined with nicotine makes cigarettes significantly more addictive than nicotine alone.  Thus, the approval of the FDA’s proposed ban on menthol cigarettes would represent an important step in reducing tobacco-related death and disease and advancing health equity in the US.

Health Equity in Cancer Care

A large body of data exists to demonstrate the disparity in the quality of health care received in the US. Dr. Brawley explained that those who receive poor quality care after a cancer diagnosis tend to be “Black, poor, and less likely to have insurance.” He cited data that men treated in the military health system for prostate cancer receive a higher quality of care than those treated in the rest of the country. He also highlighted disparities in the treatment of breast cancer.

“The death rate for Black women with breast cancer is 20 per 100,000 in Massachusetts and 30 per 100,000 in Louisiana,” he said. “They’re not genetically different; one group is just getting poorer quality care.” According to Dr. Brawley, a study conducted in Georgia revealed that 7% of women who have localized, curable breast cancer, receive no treatment within the first year after diagnosis. “In many respects, this is third world medicine in the wealthiest country in the world. We need to figure out how to get all people optimal care when diagnosed,” he said.

Crandon added that for prostate, colorectal, and lung cancer, NCCN guidelines dictate that genetic tests must be ordered to determine which mutations are driving a patient’s particular form of cancer, so that they can receive targeted therapy. However, she cited a study that found that White men with prostate cancer were tested at a 52% rate, while Black men were tested at a 41% rate. “Even if you have access to a physician, your physician may not be following the standard of care guidelines,” Crandon explained. Dr. Brawley agreed that sometimes the physician, the institution, or society are at fault for allowing some patients to receive worse care than others.

Improving Clinical Trial Access

The conversation shifted to the work the OCE is doing to diversify clinical trials and make them more accessible to patients. “We’re looking at diversity plans and asking companies to address this issue upfront,” Dr. Pazdur commented. He noted that it is important to prioritize this issue in both registration trials and earlier phase I clinical trials.

“We’re realistic. This is not going to change the whole picture of diversity and the lack of opportunities for equal health care in the US,” Dr. Pazdur said. “But it’s a step in the right direction. When you look across the FDA, oncology has been the leader in addressing this issue, pushing it forward, and asking these companies to address it.”

Another added benefit of making clinical trials more widely accessible is the overall improvement in participating doctors’ standard of care. According to Dr. Brawley, “Doctors who put 2 to 3% of their patients in clinical trials take better care of the other 97 to 98% of their patients.”

Crandon added that there needs to be serious consequences for companies who do not comply with diversity plans, because the alternative is a lack of representation for non-White patients. She told the story of her experience with a medication that made the inside of her hands and her mouth turn black while she was being treated for breast cancer. “The side effects listed that patients taking this medication may turn red,” she said. “There weren’t enough people with melanated skin [in the clinical trial] to even document it. Out of 750 people in that trial, only 2 were Black.”

According to Crandon, patients from underserved communities are at risk of becoming a “clinical trial of 1,” if they are unrepresented in research. “If we’re not in the science when they’re looking for what’s driving cancer, then we’re not going to find the answers. You can’t find what’s not there,” she shared. 

Ginyard, a prostate cancer survivor, agreed with Crandon on the need for greater diversity in clinical research. “When I was initially diagnosed, I asked how well African American men fared with different types of treatment, but there had been so little participation from African Americans in the clinical trials that I couldn’t get a concrete answer.”

Ginyard went on to emphasize how important it is to ensure Black patients are represented in clinical trials for the benefit of future generations. “We always talk about leaving a bundle of money and wealth for people but what about leaving something that can help them change their lives in terms of health treatments that are available?”

Progress Made

When asked about the trajectory of achieving true parity of cancer care among all populations, Dr. Brawley affirmed that the health care system is making progress. “One of the hardest things to convince people is that more often than not, equal treatment yields equal outcome,” he said. “[For example] Black men with stage II prostate cancer have the same outcomes as White men with the disease when both groups receive the same quality of treatment.”

According to Dr. Brawley, the US has a problem of delivering “unequal treatment,” to patients. Nonetheless, Black patients’ mortality rates have begun to decline and mirror their White counterparts across several disease types. “However,” said Dr. Brawley, “for some diseases like breast cancer, Black women still fare significantly worse than White women.” Crandon elaborated that Black women are at a higher risk for triple negative breast cancer (a particularly aggressive form of the disease). “Breast cancer mortality rates for Black women are still 40% higher than those for White women at a national level,” she noted.

“We’ve got data to show that we could be doing even better,” said Dr. Brawley. “The key is to get minority people, poor people, and disenfranchised people better quality care.”

This year’s #BlackFamCan Week culminated in Juneteenth, the commemoration of the emancipation of enslaved African Americans in the US. This national holiday highlights the country’s complicated history of slavery and racial injustice and opens the door to important conversations about how that history still impacts Black Americans today.

Everyone is welcome to join in on social media to raise awareness of National Black Family Cancer Awareness Week on social media using #BlackFamCan. A free social media toolkit, including sample text and images, is available on the National Black Family Cancer Awareness Week website. It can be downloaded and shared to continue the conversation and inspire others to do so, too.

Rachel Radwan is an editorial coordinator at the Association of Cancer Care Centers (ACCC). 

More from ACCC

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• Raising Cancer Awareness in Black Communities Through #BlackFamCan
• #BlackFamCan: Highlights from a Community Forum