Racial and Ethnic Inequality: A Public Health Perspective

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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?

Striving toward health equity

The federal government and various advocacy organizations work toward improving the health of racial and ethnic minorities. Here are a few examples:

 

While progress has been made, there’s much more work to be done.

 

To learn more about minority health, healthcare disparities, and public health, explore these articles and resources:

Boston University Free Mini-Master of Public Health (MPH)

Disparities in Health and Health Care: Five Key Questions and Answers

Internet Can Help People with Undiagnosed Rare Diseases, But Racial, Wealth Gaps Exist

Why Are Health Studies So White?

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Vicki VanArsdale

Vicki VanArsdale has a Master of Science in Health Communication from Boston University and works as a Senior Communications Specialist (government contractor) at the National Cancer Institute’s Center for Biomedical Informatics and Information Technology. She also has a freelance medical writing business and is on the board of the American Medical Writers Association (Mid-Atlantic Chapter). 

Her mother’s diagnosis of Alpha-1 Antitrypsin Deficiency—a genetic condition that affected her lungs—sparked Vicki’s interest in genomics and eventually led her to the Rare Genomics Institute. She volunteers as a copywriter, using her expertise in marketing communications to help others get the information they need.