Latino USA reports that while Latinos represent close to 18 percent of the population in the United States, fewer than five percent participate in clinical trials. For advocates who push for greater participation in the Latino community, this is a problem, and being left out could have a significant negative impact.
Dr. Eliseo Pérez-Stable of the National Institutes of Minority Health and Health Disparities at the National Institutes of Health in Washington, D.C. notes, “there are diseases that you have [out there], and this new drug comes out or this new therapy comes out and you want to know that at least people like you were in the study. It doesn’t mean we’re always going to find differences by race and ethnicity, but when we do, it’s really important.” He continued, “when we know for example that a certain kind of cancer is 30 percent more one in one group or another, or diabetes is twice as among Latinos compared to non-Latino whites, then we say what’s going on, there’s something different in the way the body responds…if all we studied were whites, we would never know about these things.”
It has been well known for many years that Latinos and other ethnic minorities, such as African Americans, do not participate in clinical research in proportion to white populations. Members of TrialSite News have been involved with patient recruitment in an extensive way nearly two decades ago and have seen that the problem has barely changed. TrialSite News produced an original survey on African American participation in clinical trials. A profound distrust of medical and health institutions is present in many communities—or at least in certain sub-demographics within some communities. Engagement at multiple levels, over time and with consistency is of vital importance. The emerging concept of clinical research as a care option has potential possibilities, but only if done the correct way and driven by proper public policy, ethics, and with intentions for community empowerment and opportunity.