Structural Racism And Sickle Cell Disease

A history of discriminatory policies in the United States has led to racial inequalities in all levels of society, including education, healthcare, and wealth. Because people in the United States with sickle cell disease (SCD) are mostly Black, their healthcare and quality of life are affected by these racial inequalities.

Why is structural racism relevant to sickle cell disease?

Structural racism is also called societal racism or systemic racism. It is the set of institutional, cultural, and historical systems that make white people more likely to have better access to healthcare, education, and wealth. For our country’s entire history, discriminatory policies have given white people more opportunities.¹

For example, the practice of redlining existed for generations. Redlining was the practice of banks denying mortgages to Black Americans who wished to buy homes in white neighborhoods. Redlining contributed to racial segregation in many cities and denied this wealth-building opportunity to Black families. This and other discriminatory policies have left a legacy of inequalities for Black Americans in:^2,3

• Housing opportunities
• Food security
• Educational resources
• Employment opportunities
• Treatment by law enforcement and criminal justice systems
• Health insurance coverage
• Access to healthcare
• Wealth and power

All of these inequalities add to the challenge of living with SCD.

How does structural racism affect healthcare for people with sickle cell disease?

Race is a significant contributor to the quality of healthcare, with Black Americans receiving worse care than white Americans. This is partially because of:^4,5

• Average income inequality
• Status of health insurance
• Misconceptions by health care professionals
• A general lack of respect for people of color

Without affordable healthcare, Black Americans have worse medical outcomes than any other racial group. They have higher death rates from cancer, heart disease, and diabetes than white Americans. Black infants also have 2 to 3 times higher mortality rates than other racial groups.⁶

Structural racism in our healthcare system also contributes to a lack of doctors with expertise in treating SCD. Only 20 percent of family doctors feel comfortable treating SCD. This prevents many people from getting routine care, causing them to seek care in emergency rooms. Plus, many ER doctors are not familiar with SCD or the need for immediate pain relief.^7,8

How does structural racism affect sickle cell disease research?

SCD was first documented over 100 years ago and is the most common genetic disorder in the world. However, a lack of money for research has prevented the development of new treatments.

Until 2017, only 1 disease-modifying treatment was available for SCD. There are now 3 more treatments, but they are expensive and not yet widely used. There is still no cure available to most people with SCD.

In comparison, cystic fibrosis is an inherited disease that affects quality of life and life expectancy in mostly white Americans. It affects 3 times fewer Americans than SCD but receives about 10 times as much research funding per person. As a result, 15 drugs are currently approved for cystic fibrosis.^9,10

Structural racism contributes to these differences in research. Funding agencies do not prioritize SCD research because they see it as less profitable. Low enrollment in clinical trials for SCD treatments has also slowed down research.¹¹

How can we reduce the impact of structural racism on sickle cell disease?

Federal agencies, lawmakers, and advocates must work together to reverse the impact of structural racism on people with SCD. Some changes that must be made to achieve this include:¹⁰

• Prioritizing federal funding for comprehensive sickle cell disease research centers
• Analyzing the effect of race on federal funding
• Including people with SCD and advocates on anti-racism task forces
• Instituting SCD-specific pain management protocols in emergency rooms
• Improving education about SCD during medical training for all doctors

Unfortunately, the overwhelming nature of structural racism is difficult to battle individually. Consider supporting or joining groups that advocate and fight for equity in healthcare.

Racism can also add to the stress and anxiety of SCD. Take care of your mental health by talking about your experiences with trusted sources, such as a therapist or support group.

Racism has been deeply ingrained in American communities for centuries. Because of this, structural racism sustains itself unless it is fought against. Lawmakers, advocates, and research funding agencies must work together to reduce the impact of structural racism on people with SCD.