If you, or a loved one, are living with a rare disease, you may have gone to doctor after doctor, seeking a diagnosis. You may have spent hours, days, or weeks online, looking for answers or a glimmer of hope. You know the struggle of having a rare disease—lack of research, lack of drugs to treat your condition, and often, many unanswered questions. Now, imagine having a rare disease without access to quality healthcare or high-speed internet to conduct research at home.

For some people, this is reality. But this reality isn’t only found in the rare disease community. Healthcare disparities exist across the U.S. These differences occur because of race/ethnicity, age, location, gender, sexual orientation, and socioeconomic status. For example, poor people may lack the resources to get the help they need. As a result, they may develop underlying health conditions like diabetes or heart disease that makes them more vulnerable to deadly diseases. This has become abundantly clear with COVID-19; the coronavirus has been hitting racial and ethnic minorities hard.

Social determinants of health

This graphic, created by the Henry J. Kaiser Family Foundation, provides an overview of the social determinants of health. Public health experts agree these factors play an important role in health outcomes like illness, death, and life expectancy. Things many people take for granted–like housing, nutritious, affordable food, or safe outdoor recreation areas—could mean life or death for others.

Lack of diversity in clinical research

Racial and ethnic minorities are underrepresented in clinical research. Some of these socioeconomic factors may be partly to blame, but fear of doctors or hospitals or a lack of trust with the medical establishment are others. Two examples of an abuse of trust come to mind— the Tuskegee syphilis study and Henrietta Lacks’ HeLa cell line. Other reasons for the lack of diversity in clinical research are language or cultural barriers, and a lack of awareness about clinical research.

A lack of diversity in clinical research means the results may be skewed, and treatments may not work as well in these underrepresented patient populations. For example, if a drug has been tested mostly on people of European descent, what does it mean for everyone else?