“It feels like knives are stabbing me all over my entire body.” To live with Sickle Cell Disease is to live with immense chronic pain. This quote was taken from our ongoing research on the health care experiences of people living with Sickle Cell Disease (Lawrence et al. 2014). Beyond the pain, to live with Sickle Cell Disease is to live with a disease that many people don’t understand and many doctors don’t know how to properly treat. Sickle Cell Disease shows us how social constructions and social structure profoundly change the experience of living with a chronic disease.
The Social Construction of Sickle Cell Disease
If you’ve heard of Sickle Cell Disease, chances are you’ve also heard the myth that it is a, “black disease.” Sickle Cell Disease affects people of all races. According to the World Health Organization, the Sickle Cell Trait is more common among people whose ancestors came from areas of the globe where malaria is common, such as West and Central African, the Mediterranean, and the Middle East. The Sickle Cell Trait provides some protection against malaria which partially explains why it is more common in these geographic regions (for more information about the controversies surrounding Sickle Cell Trait, see Lawrence and Shah 2014).
It is true that African Americans are affected at a higher rate than any other racial ethnic group. Nelson and Hackman (2013) report that 1 in 500 African Americans was affected by Sickle Cell Disease, but that rate dropped to 1 in 3000 for all other racial ethnic groups. All told, Sickle Cell Disease affects approximately 100,000 in the United States and millions more worldwide.
Despite the scientific evidence, many still believe that Sickle Cell Disease is a “black disease” and this misconception affects the quality of care individuals with Sickle Cell receive and the amount of money devoted to Sickle Cell research and advocacy (Smith et al. 2006). Or put in more sociological terms, the way we socially construct Sickle Cell Disease influences the social structures that surround it.
The Social Structure of Sickle Cell Disease Care
Simply put, a patient’s race affects the healthcare they receive (Nelson and Hackman 2013; U.S. Department of Health and Human Services 2013). Scholars use the term racial healthcare disparities to describe the racial, “differences between groups in health coverage, access to care, and quality of care” (Kaiser Family Foundation 2012). On average, African Americans are less likely to have health insurance compared to whites (U.S. Department of Health and Human Services 2014). However, having health insurance doesn’t guarantee you will receive the treatment you need.
A wealth of research shows that African Americans receive lower quality healthcare from their medical providers than their whites counterparts (Nelson, Presad, and Hackman 2012). For instance, health care providers screen African Americans less often for diseases like cancer (DeSantis 2013). This fact partially explains why, “even though the rate of breast cancer incidence is 10 percent lower among African American women, they are 40 percent more likely to die from the disease” (U.S. Department of Health and Human Services 2014). Some people argue that these health care differences are based on genetic and social class differences, but this isn’t supported by the evidence. When researchers account for genetics and socio-economic status, African Americans still receive worse care than whites (Nelson, Presad, and Hackman 2015).
Those living with Sickle Cell Disease experience a wide variety of racial health care disparities. When the debilitating pain of Sickle Cell forces a patient into the emergency room, they often find that the medical staff is unable to provide adequate care (Jenerette, Leak, and Sandelowski 2011). The derogatory term “sicklers” is used by some medical providers to describe patients they feel are exaggerating their levels of pain, failing to comply with medical advice, and/or “drug seeking” (i.e. trying to acquire pain medications to abuse them) (Jenerette, Leak, and Sandelowski 2011; O’Connor et al. 2014; Ratanawongsa et al. 2009). Finally, while all African American patients wait longer than their white counterparts for care in the ER, Sickle Cell Patients wait 25% longer on average (Haywood, Tanabe, Naik, Beach, and Lanzkron 2013).
How Could Things Be Different?
Cystic Fibrosis is similar to Sickle Cell in multiple ways. First, both are classified as “orphan diseases” because they affect less than 200,000 people in the United States. According to the Cystic Fibrosis Foundation, Cystic Fibrosis affects about 30,000 people in the U.S. (and 70,000 world-wide). Second, both are inherited diseases. However unlike Sickle Cell, Cystic Fibrosis disproportionately impacts white Americans of Northern European descent. Finally, just as it would be wrong to say that Sickle Cell was a “black disease” it would be equally wrong to say that Cystic Fibrosis is a “white disease.” People of all racial ethnic groups are affected by both diseases.
However, there are still some stark differences between these two diseases. Despite affecting only about a third as many people as Sickle Cell, The U.S. National Institute of Health spends more money on researching Cystic Fibrosis. A much larger gap in funding exists when you consider private donations. In 2012, the nonprofit Sickle Cell Disease Association of America had a total revenue of $1,098,978 while the Cystic Fibrosis Foundation in 2014 had $405,530,384 (Hrywna 2014). This means that $16,084 is spent on research and advocacy for each person with Cystic Fibrosis in the United States while only $761 is spent per person with Sickle Cell Disease. That is roughly 21 times as much money per person affected.
What we can learn from all of this is that not all patients or diseases are treated equally. The inequality we see in the social world is recreated in the medical world. The way we understand, research, and treat a disease are all influenced by how our society is structured.
- Test your knowledge of Sickle Cell Disease with this quiz from the Centers for Disease Control and Preventions (http://www.cdc.gov/features/SCD/). Describe at least two interesting facts you learned. How do you think your social location (i.e., race, gender, social class, etc.) affected what you already knew about the disease?
- How might the poor quality of care Sickle Cell patients receive be connected to the amount of federal and private funding the disease receives? If more money was spent on medical research, training, and advocacy do you feel the quality of treatment would also improve? Explain.
- Do a quick Google search and find another example of a racial healthcare disparity. First write down where you found your information and then explain why what you found is a good example of a racial healthcare disparity. Avoid sites like Wikipedia, WebMD, About.com, or the like. Try to find a source that is from a reputable health organization (e.g. The American Cancer Society) or the federal government (i.e. the site’s URL should end in .gov).
- Another important issue in the treatment of SCD is helping individuals successfully transition from pediatric to adult health care. Read this brief discussion on the Sickle Cell Disease Association of America website. Explain why transition has become an important focus in SCD research.
- Haywood, Carlton, Paula Tanabe, Rakhi Naik, Mary Catherine Beach, and Sophie Lanzkron. 2013. “The Impact of Race and Disease on Sickle Cell Patient Wait Times in the Emergency Department.” The American Journal of Emergency Medicine 31(4): 651–656.
- Hrywna, Mark. 2014. The NPT 2014 Top 100. The Nonprofit Times.
- Jenerette, Coretta M., Ashley N. Leak, and Margarete Sandelowski. 2011. “Life Stories of Older Adults with Sickle Cell Disease.” The ABNF Journal: Official Journal of the Association of Black Nursing Faculty in Higher Education, Inc. 22(3): 58–63.
- Lawrence, Raymona and Gulzar H. Shah. 2014. “Athletes’ Perceptions of National Collegiate Athletic Association-Mandated Sickle Cell Trait Screening: Insight for Academic Institutions and College Health Professionals.” Journal of American College Health 62: 343–350.
- Lawrence, Raymona, Bettye Apenteng, April M. Schueths, and Robert Gibson. 2014. "Healthography of Sickle Cell Disease (SCD) Transition: Exploring Community-Level Indicators of SCD Transition Success from Rural, Georgia SCD Patients’ Perspectives.” American Public Health Association (APHA) Annual Meeting, November 15, 2014, New Orleans, LA.
- Nelson, Stephen C. and Heather W. Hackman. 2013. “Race Matters: Perceptions of Race and Racism in a Sickle Sell Center.” Pediatric Blood & Cancer 60(3): 451–454.
- Nelson, Stephen C., Shailendra Prasad, and Heather W. Hackman. 2015. “Training Providers on Issues of Race and Racism Improve Health Care Equity. Pediatric Blood & Cancer.” Pediatric Blood & Cancer
- O’Connor, Stefani, Deborah Hanes, Amy Lindsey, Mary Weiss, Lorie Petty, and Janine Overcash. 2014. “Attitudes Among Healthcare Providers and Patients Diagnosed With Sickle Cell Disease.” Clinical Journal of Oncology Nursing 18(6): 675–680.
- Ratanawongsa, Neda, Carlton Haywood, Shawn M. Bediako, Lakshmi Lattimer, Sophie Lanzkron, Peter M. Hill, Neil R. Powe, and Mary Catherine Beach. 2009. “Health Care Provider Attitudes toward Patients with Acute Vaso-occlusive Crisis Due to Sickle Cell Disease: Development of a Scale.” Patient Education and Counseling 76(2): 272–278.
- Smith, Lauren A., Suzette O. Oyeku, Charles Homer, and Barry Zuckerman. 2006. “Sickle Cell Disease: A Question of Equity and Quality.” Pediatrics 117(5): 1763–1770.