Sung Poblete, Ph.D., RN
President and CEO, Stand Up To Cancer, and Edith A. Perez, M.D., Professor of Medicine, Mayo Clinic College of Medicine
A half-century after America’s Civil Rights Movement exposed gross disparities in healthcare among minorities, the issue still plagues the medical community.
This is particularly true with cancer, which affects all population groups in the United States, yet disproportionately burdens some more than others.
The U.S. cancer death rate has declined by 27 percent since peaking in 1991, but not everyone has benefited equally from advancements in prevention, early detection, and treatments. While the underlying complex causes of disparities in cancer care include interrelated social, economic, cultural, environmental, and health-system factors, we also know clinical trial participation (or the lack thereof) plays a critical role.
Trial and error
Clinical trials are the most important and reliable means available to provide the necessary scientific evidence to develop therapies and effective care management for cancer patients. So it’s imperative to ensure all Americans have the opportunity to participate.
This is not the case, however. Today, clinical trials often have low participation by racial and ethnic minorities, and people with diverse genetic ancestry, largely because of mistrust of the healthcare system and medical research, a difficult application process, anticipated costs, a sense of fatalism, fear and delays in seeking healthcare, and language and other cultural barriers.
Low clinical trial participation makes it more likely that results may not fully apply to all patients.
Changing the narrative
One size doesn’t fit all. Addressing this issue in meaningful ways requires a precise understanding of how minority groups’ perceptions differ, including their respectively unique objections to clinical trial participation.
Taking into account how different minority groups talk about cancer and clinical trials is also essential for raising public awareness and educating patients, their families, caregivers, and the medical community about the importance of diversity among participants in clinical trials.
These are undoubtedly complex challenges that will require a total reengineering of how clinical trials are conducted. The alternative — maintaining the status quo and allowing the broad chasm between the “haves” and “have nots” in cancer care to persist — is unacceptable. It’s literally a matter of life and death.