In honor of Black History Month, we feel it’s important to acknowledge the adversity that Black patients have historically faced within the field of medical research and how this has contributed to this population being underrepresented in clinical trials today.
For many Black Americans, mention of clinical trials may provoke thoughts of the infamous Tuskegee Syphilis Study. Beginning in 1932, this 40-year study involved offering placebos and conducting painful diagnostic tests on 600 Black men, nearly 400 of whom were infected with syphilis while 200 were used as control subjects. Even after treatment for the disease became widely available 15 years into the study, most of the men were not made aware of their syphilis diagnosis and researchers continued to assert that they were being treated for “bad blood.” To date, this study has been referred to as the longest running non-therapeutic experiment on humans and one of the most notorious cases of prolonged violation of human subjects. Although there are safeguards in place to prevent this type of abuse in clinical trials from happening today, the negative effects that this study has on Black Americans’ attitudes toward medical research prevail.
But it’s more than just a history of mistreatment that prevents Black patients from participating in trials. One 2021 study conducted by Dr. Muhammad Awidi and Dr. Samer Al Hadidi identified four major barriers facing Black Americans’ participation: access to care, system or provider distrust, availability awareness and lack of clinical trials education. These combined with racism within health systems understandably contribute to a lack of enthusiasm amongst Black patients to participate in clinical trials. Research has shown that Black Americans, who make up roughly 14 percent of the U.S. population, account for only 3.1 percent of participants in clinical trials for cancer drugs. Meanwhile, across most cancers, Black Americans have the highest death and shortest survival rates of any racial or ethnic group. Improving Black Americans’ participation in clinical trials is becoming increasingly critical in determining the safety and efficacy of new treatments across populations. It also allows for better access to high-quality, potentially life-changing therapies in minority communities.
Although we can’t erase the harm done to Black communities that forms negative impressions of clinical trials, we can help to circumnavigate the social obstacles that prevent them from participating. At Leapcure, we take advantage of being able to diversify recruitment at a site level; we seek to build long-lasting relationships rooted in a shared commitment to improving health outcomes within underrepresented communities by partnering with patient advocacy groups; we provide access to patient-friendly resources that are culturally sensitive so that patients of all backgrounds can easily identify and enroll in relevant clinical trials; and we meet patients where they are, taking the time to educate and offer guidance every step of the way. This is where we’ve started, but it’s not where we’re ending. We are always learning, open to honest discussions and constantly looking at ways to improve.
While we’re excited to be a part of the growing momentum behind combatting medical bias in our industry, we never want to ignore the history and social structures that allow for it to exist in the first place. By looking back at the injustices Black patients have faced throughout our nation’s history, we’re better equipped to help them overcome new hurdles that mirror the old, and can collectively pave the way for more equitable access to medical care for generations of Black Americans to come.
American Cancer Society. (2019). Cancer facts & figures for African Americans 2019–2021. Atlanta: American Cancer Society. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/cancer-facts-and-figures-for-african-americans/cancer-facts-and-figures-for-african-americans-2019-2021.pdf
Awidi, M., & Al Hadidi, S. (2021). Participation of Black Americans in cancer clinical trials: Current challenges and proposed solutions. JCO Oncology Practice, 17(5), 265–271. https://doi.org/10.1200/op.21.00001
Loree, J. M., Anand, S., Dasari, A., Unger, J. M., Gothwal, A., Ellis, L. M., Varadhachary, G., Kopetz, S., Overman, M. J., & Raghav, K. (2019). Disparity of Race Reporting and Representation in Clinical Trials Leading to Cancer Drug Approvals From 2008 to 2018. JAMA Oncology, 5(10), e191870. https://doi.org/10.1001/jamaoncol.2019.1870