The Connections Between Sickle Cell Anemia and Overall Treatment Around the Globe
According to the Centers for Disease Control and Prevention (CDC), sickle cell anemia is a group of inherited red blood cell disorder where the affected person’s red blood cells are in a hard, sticky, and in sickle type of shape as opposed to a smooth and round red blood cell that those without SCD have. There are multiple groups of sickle cell disease (SCD), such as hemoglobin SS disease (HbSS) and hemoglobin SC disease (HbSC) , where one is the most severe form due to the fact both parents passed down the gene for sickle cell anemia and the other has one gene for sickle cell and one for an abnormal hemoglobin that leads to a more milder form of SCD. It is estimated that approximately 100,000 Americans have been diagnosed with the disorder every year, it occurs 1 in every 365 black/African American births, 1 in every 16,300 Hispanic births, and that every 1 in 13 black/African Americans born has the sickle trait. There are traces back to those who have ancestors in places such as Sub-Saharan Africa as well. Seeing that SCD mainly affects people of color, that would lead towards speculation on whether or not this fact leads to discovering any racial disparities within the medical field in different parts of the world.
There has been evidence of existing racial bias towards individuals with SCD within the United States. In a report by Emily O. Wakefield, it was gathered that 20 young African Americans who had sickle cell anemia and later on had them recount. The results of this experiment demonstrated that “all participants endorsed community racial bias and four participants described medical racial bias experiences (Wakefield et al)”. These results would confirm this idea that there is an ongoing racial bias in community settings, but also in medical ones. There would also need to be some sort of mediator that people can go to when such situations happen, such as pediatric psychologists who may have patients with sickle cell anemia. Similarly, the work of Stephen C. Nelson and Heather W. Hackman also demonstrated the perceptions from SCD individuals, their families, and healthcare staff. They found that “Within the healthcare delivery domain, more patients/families felt that race affects the quality of health care for sickle cell patients (50% vs. 31.6%, P ¼ 0.003, OR 2.1). More staff perceived unequal treatment of patients at our institution, especially in the inpatient setting (20.9% vs. 10.9%, P ¼ 0.03, OR 0.46). An equally small number of patients and families perceived being treated differently because of race in the outpatient and inpatient settings (11% vs. 10.9%)(Nelson et al)”. These numbers support the idea that there is an existing racial bias towards people who have sickle cell anemia. With the information given from both papers, it can be concluded that individuals with sickle cell anemia experience issues that connect back to their race.
Just like differences in experience were connected to race from people with sickle cell anemia, there is also an existing stigma for those who have sickle cell anemia. In a review by Alphanso Blake et on the stigma of sickle cell, he and his colleagues took their report in Jamaica and found “Whereas stigma is thought to be partly a product of SCD being a ‘minority’ disease in countries, such as the U.S.A. or Canada, the results are similar in our population where those considerations are not relevant (Blake et al)”. Blake’s report also reveals how deep the stigma for sickle cell anemia is, to the point where the stigma remains the same regardless of country. The use of having their investigation take place in Jamaica further proves it. This leads to the possible conclusion that the stigma of sickle cell is more race related than medically related. However, in Nigeria, a group of researchers found that there was also a social stigma tied in with sickle cell anemia. They documented this find by writing “However, a substantial proportion also endorsed negative stigmatizing attitudes towards SCD. For example, 35% of the students believed that most students would definitely spread rumors about a peer with SCD. Also, only 41% believed their fellow students would definitely invite such a child to their birthday party and only 43% believed other students would definitely like to do homework together with the affected peer. (Ola et al)”. Although these numbers lie below the 50 percent mark, it still shows how a large minority of the children were uninformed about what sickle cell anemia was, and therefore creating a stigma to stay away from those affected by it. Even though race did not essentially matter in this situation, the stigma created showed how treatment outside of a medical environment greatly matters as well.
Sickle cell anemia not only seems to affect individuals physically, but it also affects them through non-physical events such as racism and the existence of a stigma that comes with the disease. Now this brings new questions to the table such as “what are the next steps to prevent these situations from happening?
Blake, Alphanso, et al. “Stigma and illness uncertainty: adding to the burden of sickle cell disease.” Hematology, vol. 23, no. 2, pp. 122-30. Google Scholar , doi:DOI: 10.1080/10245332.2017.1359898, www.tandfonline.com/doi/pdf/10.1080/10245332.2017.1359898. Accessed 7 Aug. 2020.
Nelson, Stephen C., and Heather W. Hackman. “Race Matters: Perceptions of Race and Racism in a Sickle Cell Center.” Pediatr Blood Cancer, Sept. 2013, pp. 1-4. Google Scholar , doi:DOI 10.1002/pbc.24361, hackmanconsultinggroup.org/wp-content/uploads/Race-Matters.pdf. Accessed 7 Aug. 2020.
Ola, Bolanle, et al. “STIGMATISING ATTITUDES TOWARDS PEERS WITH SICKLE CELL DISEASE AMONG SECONDARY SCHOOL STUDENTS IN NIGERIA.” International Journal of Child, Youth and Family Studies, vol. 4, 2013, pp. 391-402. Google Scholar , doi:https://doi.org/10.18357/ijcyfs44201312693. Accessed 7 Aug. 2020.
United States, Department of Health and Human Services, Centers for Disease Control and Prevention. “What is Sickle Cell Disease?” Centers for Disease Control and Prevention,21 Oct, 2019, https://www.cdc.gov/ncbddd/sicklecell/facts.html
Wakefield, Emily O., et al. “Describing Perceived Racial Bias Among Youth With Sickle Cell Disease.” Journal of Pediatric Psychology, vol. 43, no. 7, Aug. 2018, pp. 779-88. Google Scholar , doi:https://doi.org/10.1093/jpepsy/jsy015, academic.oup.com/jpepsy/article/43/7/779/4942298. Accessed 7 Aug. 2020.