It was the start of the COVID-19 pandemic when Sheena began experiencing terrible ear pain. She consulted with multiple doctors to figure out what was causing her pain, but they were stumped. Finally, her primary care physician did a chest X-ray on a whim and noticed a mass in her lung.
Shortly thereafter, Sheena was diagnosed with advanced lung cancer, which came as a shock since she had no known risk factors. Luckily, Sheena works in healthcare and was accustomed to advocating for herself. After much research she found a healthcare team she trusted. Her oncologist conducted biomarker testing on her tumor tissue to see if she had any changes in her DNA that were driving the cancer. As it turns out, Sheena has EGFR-positive non-small cell lung cancer. When it was time to discuss treatment options, her oncologist suggested a clinical trial might be the most appropriate treatment option for her at the time and she agreed to participate.
Enrollment in a clinical trial can provide individuals with access to cutting-edge therapies; however, not everyone benefits from clinical trials equally. Unfortunately, there are many Black women and men diagnosed with lung cancer who do not enroll in clinical trials. Black patients, like Sheena, are consistently underrepresented in cancer clinical trials. There has also been little to no increase in clinical trial enrollment rates for Black people over the last decade. Research shows that Black Americans, who make up roughly 14% of the U.S. population, account for only 3.1% of participants in clinical trials for cancer drugs.i For lung cancer clinical trials specifically, there was even a decline in the percentage of Black participants between 2011 and 2015,ii a trend we hope to see reversing since many stakeholders have a renewed commitment to addressing this disparity.
In January 2022, the American Lung Association launched its campaign “Awareness, Trust and Action,” aimed at empowering Black Americans to speak with their doctors about clinical trials. The campaign features a thoracic surgeon, a local Pastor and Sheena sharing testimonials and information about why clinical trials and diversity in clinical trial enrollment are important. Low clinical trial enrollment among historically underrepresented populations, such as Black Americans, is a complex topic. “Black Americans face many barriers to accessing clinical trials, but the American Lung Association is committed to ensuring education is not one of them,” Deb Brown, Chief Mission Officer of the American Lung Association, said.
Wendy Short Bartie, Senior Vice President – US Oncology at Bristol Myers Squibb, a sponsor of the Awareness Trust and Action campaign, agrees. She notes, “Education is an essential component to improving diversity in clinical trial enrollment to ensure that all people affected by cancer can equally benefit from the latest science and treatments. At Bristol Myers Squibb, we’re working with a number of organizations, including the American Lung Association, to reach diverse communities with information about the potential benefits of clinical trials and how to access them.”
She goes on to say, “As an African American, I am acutely aware of the disparities that persist in healthcare and disproportionately impact the Black community. Cancer is an area with a lot of room for improvement. Encouraging diversity in lung cancer clinical trials is an important part of working towards health equity.”
Through her participation in a clinical trial, Sheena now takes a pill once a day which keeps her cancer under control. The clinical trial is highly monitored, and Sheena is in close contact with her physicians so they can address any side effects that might occur. She is passionate about sharing her experience with other Black lung disease patients to raise awareness of the importance of self-advocacy, education and making informed care choices. “As my father used to say, we are dealt a deck of cards in life. And it is about how to play our cards that matters. I don’t want anyone facing lung disease to miss out on receiving the best care for them, which may be a clinical trial,” says Sheena.
To learn more about lung cancer clinical trials among Black Americans, visit Lung.org/trials-and-you.
Support for this project is provided by AstraZeneca, Bristol Myers Squibb and Merck.
[i] Loree JM, Anand S, Dasari A, et al. Disparity of Race Reporting and Representation in Clinical Trials Leading to Cancer Drug Approvals From 2008 to 2018. [published online August 15, 2019]. JAMA Oncology. doi: 10.1001/jamaoncol.2019.1870.
[ii] Duma, N., Aguilera, J. V., Paludo, J., Haddox, C. L., Velez, M. G., Wang, Y., Leventakos, K., Hubbard, J. M., Mansfield, A. S., Go, R. S., & Adjei, A. A. (2018). Representation of minorities and women in oncology clinical trials: Review of the past 14 years. Journal of Oncology Practice, 14(1), e1-e10. https://ascopubs.org/doi/abs/10.1200/JOP.2017.025288.
Blog last updated: August 23, 2023