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A Call for Action in Sickle Cell Disease Research and Treatment

In November of 2020, The New England Journal of Medicine featured an article surrounding the intersectionality between racism and sickle cell disease (SCD), entitled “When actions speak louder than words-Racism and sickle cell disease.” For many individuals, perhaps this was their first time learning about sickle cell disease. For others, this may have been their first realization of the racism and stigmatization continuing to occur in healthcare.

The racist roots of sickle cell disease are sometimes discussed between various providers within collaborative care. Health psychologists sometimes spend a significant amount of time providing psychological services to individuals impacted by sickle cell disease. Despite its prominence in practice, training programs provide very little education, knowledge, or awareness of the stigmatization still occurring in healthcare. The resources available for sickle cell disease were sparse, yet this condition created immense stress for patients and their families. This begs the question: how do providers in the mental health field play a role in addressing the stigmatization and racism that is deeply rooted in the healthcare system?

Sickle Cell Disease: Racism in the Numbers

Sickle Cell Disease is an umbrella term referring to a group of blood inherited diseases, consisting of recurrent intense pain episodes and chronic health complications requiring proper medical treatment and expertise (Kato et al., 2018). The origins of SCD are connected to the African continent, meaning nearly all individuals with SCD in the United States were Black (Power-Hays & McGann, 2020). In addition to medical complications, SCD often impacts social and emotional functioning, including feelings of isolation, depression, poor interpersonal relationships, and stigmatization (Blake et al., 2018). Most treatments for SCD include antibiotics, pain management, and blood transfusion. Currently, the only cure for SCD is a bone marrow transplant. If an individual does not have a family donor, it is estimated to be around a 23% likelihood that they find a donor outside of their family (Chapman, 2020).

Health-related stigma can be understood through Goffman’s social theory of stigma; a theory that posits individuals are rejected due to attributes that are dismissed by society (Blake et al., 2018). In the case of SCD, the misunderstanding of the illness and associated racism leads to stigmatization. The implication of this stigmatization includes individuals delaying medical care and keeping their medical status concealed, which in turn often leads to increased emotional distress and exacerbation of pain symptoms. Furthermore, there are stark differences in funding and resources when comparing SCD to other health conditions primarily impacting majority populations. This sends an indirect message regarding the severity of the illness and impact it has on individuals. Why is it that healthcare is treating SCD as less important than other health conditions? To put this into perspective:

  • SCD impacts more than 80,000 Americans (Smith et al., 2006)
  • In the US, 98% of individuals with SCD are Black and 98% of individuals with Cystic Fibrosis are White (Nelson & Hackman, 2013)
  • The US birth rate of SCD is one in 365 black individuals in comparison to Cystic Fibrosis which is one in 2500 white individuals (Melillo, 2020)
  • Individuals with Cystic Fibrosis receive seven to 11 times more funding than those with SCD (Power-Hays & McGann, 2020)
  • On average, Black Americans are less likely to be prescribed pain medication, and if they are, it is often lower dosage than White individuals (Hood et al., 2020)

The list continues; however, these are just some of the immensely problematic statistics related to funding and support for individuals with SCD. Society has neglected to shed light on a life altering disease due to the minority population it impacts, sending a message the health of these individuals is “less important.”

Practice What We Preach

Mental health providers can begin by learning about the structural racism that exists in the healthcare system. This includes cultural humility and understanding the barriers to treatment for minority populations, including those with SCD. Patients and providers are often left with confusion and anger when exploring the literature to better understand SCD.  There is a statistical underfunding that exists for SCD research due to systemic racism, which limits provider’s abilities to be an informed advocate for patients and their families (Power-Hays & McGann, 2020).

Mental health providers can work to integrate care into SCD treatment and provide psychoeducation regarding the impact of psychosocial support on SCD outcomes. Additionally, psychologists can play a role in leading didactic trainings for healthcare professionals based on racial bias and racism in evidence-based medical protocols. In promoting race-based conversations, providers can encourage healthcare professionals to address some of their own potential biases and facilitate conversation surrounding the racism that exists within healthcare.

Mental health providers can also play a role in not only listening to individuals with SCD and their families but advocating for them as well. Providing patients with education and resources guided by cultural competence and awareness will help to make individuals feel heard, in a system where they often feel dismissed. As mentioned, a large portion of work requires being integrated into a medical team. Here, mental health professionals can provide psychological pain management strategies and help both patients and their families cope with the diagnosis. Psychologists have a role, and that is to shed light on a healthcare system that consistently fails minority populations….

Because mental health work is antiracism work.

Summary

While Sickle Cell Disease impacts more than 100,000 Americans, it is severely underfunded and understudied due to racism within the healthcare system. Mental health providers can play an integral role as a member of a multidisciplinary treatment team helping individuals with Sickle Cell Disease. Through cultural competence, expertise in pain management strategies, and evidence-based practices, health focused mental health providers can serve within a supportive role, advocating for patients and their needs.

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Cite This Article

Moss, L. (2022, March). A call for action in sickle cell disease research and treatment. [Web article]. Retrieved from http://www.societyforpsychotherapy.org/a-call-for-action-in-sickle-cell-disease-research-and-treatment

References

Blake, A., Asnani, V., Leger, R. R.,  Harris, J., Odesina, V., Hemmings, D. L., Morris, D. A., Knight-Madden, J., Wagner L., & Asnani, M. R. (2018). Stigma and illness uncertainty: Adding to the burden of sickle cell disease. Hematology, 23(2), 122-130. doi: 10.1080/10245332.2017.1359898

Bediako, S. M., & King-Meadows, T. (2016). Public support for sickle-cell disease funding: Does race matter? Race and Social Problems, 8(2), 186-195. doi: 10.1007/s12552-016-9173-x

Bediako, S. M., & Moffitt, K. R. (2011). Race and social attitudes about sickle cell disease. Ethnicity & Health, 16(4-5), 423-429. doi: 10.1080/13557858.2011.552712

Hood, A., Crosby, L., Hanson, E., Shook, L., Lebensburger, J., Madan-Swain, A., Miller, M. & Trost, Z. (2020). The influence of perceived racial bias and health-related stigma on quality of life among children with sickle cell disease. Ethnicity & Health. doi: 10.1080/13557858.2020.1817340

Kato, G. J., Piel, F. B., Reid, C. D., Gaston, M. H., Ohene-Frempong, K., Krishnamurti, L., Smith, W. R., Panepinto, J. A., Weatherall, D. J., Costa, F. F. & Vichinsku, E. P. (2018). Sickle cell disease. Nat Rev Dis Primers, 4. doi: 10.1038/nrdp.2018.10

Nelson, S.C. and Hackman, H.W. (2013). Race matters: Perceptions of race and racism in a sickle cell center. Pediatric Blood Cancer, 60, 451-454. doi: 10.1002/pbc.24361

Power-Hays, A. and McGann, P. (2020). When actions speak louder than words — Racism and sickle cell disease. The New England Journal of Medicine, 383 (20), 1902-1903.

Smith, L., Oyeku, S., Homer, C., & Zuckerman, B (2006). Sickle cell disease: A question of equity and quality.Pediatrics, 117 (5), 1763-1770. doi: 10.1542/peds.2005-161

Telfair, J., Myers, J., & Drezner, S. (1998). Does race influence the provision of care to persons with sickle cell disease? perceptions of multidisciplinary providers. Journal of Health Care for the Poor and Underserved, 9(2), 184-95. Retrieved from http://search.proquest.com.ezproxylocal.library.nova.edu/docview/220584411?accountid=6579

Williams-Gray, B. & Senreich, E. (2015). Challenges and resilience in the lives of adults with sickle cell disease. Social Work in Public Health, 30(1), 88-105. doi:10.1080/19371918.2014.938396

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