Source: NCAA
Source: Akron Children’s Hospital
(for more information on sickle cell anemia: https://www.britannica.com/science/sickle-cell-anemia )
The discovery of sickle cell anemia is credited to James Herrick and his intern, Ernest Irons. These researchers discovered the disease with the aid of microscopes in 1910, making it the first heritable affliction to be identified at a molecular level. Not much was known about sickle cell anemia at first, and throughout the 1930s and 1940s the disease was known as “the great masquerader” because sickle cell-related deaths were so hard to distinguish. These deaths were typically blamed on obvious infections, such as pneumonia, rather than the underlying condition that allowed these infections to become fatal. (Siddiqi, Jordan, and Parker 2015). In 1941, scientist Linus Pauling discovered the role that deoxygenized hemoglobin played in the manifestation of sickle cell symptoms. Awareness of the disease would not spread for ten more years, however, when the Scientific American published his findings. Despite this newfound attention, sickle cell anemia was not addressed by the government in the form of public health legislation until 1971 when President Nixon included the disease in his health message to Congress (Siddiqi, Jordan, and Parker 2015). Increased awareness of the condition led to the National Sickle Cell Anemia Control Act of 1972, which allocated $500,000 to a Memphis based research team to conduct experiments regarding sickle cell anemia, leading to the first notable study concerning the disease. This study, which reviewed records of 2.1 million military personnel, investigated the amount of unexplained deaths that could be attributed to sickle cell anemia. After several decades and many more studies, the Sickle Cell Treatment Act was signed into law in 2003 to provide funding for the research and distribution of sickle cell treatments (Naik and Haywood 2015). In the interim period between these two wide-sweeping sickle cell legislations, many more controversial, smaller directives were passed regarding mandatory sickle cell screening.
Starting in 1975, the federal government began to require that every newborn be screened for sickle cell at birth. However, the implementation of this legislation was flawed at first, and it would not be enforced in all fifty states for over thirty years. During the initial stages of the newborn sickle cell testing, pregnant women and their spouses were also required to be tested. However, individuals were often not informed of their sickle cell status, creating an air of mistrust surrounding the tests’ and medical professionals’ intentions. Many blacks also felt forced to disclose their medical status despite being subject to employment, health, and marriage discrimination. Because they targeted the African American population, the early stages of sickle cell anemia screening have been compared to the Tuskegee syphilis study (Naik and Haywood 2015). The researchers running this decades-long study investigated the full course of syphilis in hundreds of poor black subjects without informing them of their actual affliction or giving treatment (Encyclopedia Britannica 2016). (For more on the study: https://www.britannica.com/event/Tuskegee-syphilis-study ) Once exposed, this infamous example of unethical medical discrimination caused many African Americans to be suspicious of any studies that singled them out. In particular, many African Americans in the military felt targeted by the mandatory screening before enlistment rule. The military administered these tests and set restrictions on the duties that individuals with sickle cell anemia could perform for years. In 1985, however, both the screenings and restrictions ceased due to a lack of evidence for their necessity and concerns over implicit racism (Naik and Haywood 2015).
The most controversial of all of the mandatory screenings involved collegiate athletes. In 2010, as part of a legal settlement, the NCAA established a mandatory opt-out sickle cell screening policy for its Division I athletes, later extending this mandate to divisions II and III as well (Jordan et al. 2011). Many athletes and activists have taken issue with this requirement, asserting that it perpetuates legal racism and discrimination. Opponents of the screening argue that it infringes on the rights of the individual, stigmatizes them, and prevents them from participating in athletics and certain careers. Athletes who test positive for sickle cell anemia are faced with the hurdle of designing their own training program, something athletes without this condition do not have to worry about. Adding to the controversy surrounding testing, the Sickle Cell Diseases Association of America, Inc. and the American Academy of Pediatrics both openly oppose the NCAA’s screening policy, arguing that it could cause coaches and trainers to consciously or unconsciously limit affected athletes’ playing time (Jordan et al. 2011).
Sickle cell anemia has been at the forefront of the government’s health policy for decades. It was the first genetic disorder to receive federal recognition and funding, despite its heavily racialized nature. Sickle cell anemia has historically been classified as a ‘black disease,’ and President Nixon even addressed it as such in his historic address to Congress (Naik and Haywood 2015). “Racialization” is defined as the processes and institutions that cause a group to be increasingly defined by their race (Thompson-Miller 2007). In this case, policies of the U.S. government and the NCAA have facilitated the racialization of African Americans as a result of the threat of disease. The stigmatization of those who have sickle cell anemia as less physically competent has perpetuated a distrust and fear of medical professionals and those designing health policy. However, most significantly, those with sickle cell anemia often feel like they have surrendered the ability to control their healthcare and lifestyle to the government and health care professionals (Wesley et al. 2016).
References
Jordan, Lanetta B., Kim Smith-Whitley, Marsha J. Treadwell, Joseph Telfair, Althea M. Grant, and Kwaku Ohene-Frempong. Source: NCAA
“Screening U.S. College Athletes for Their Sickle Cell Disease Carrier Status.” American Journal of Preventive Medicine 41, no. 6 (2011). doi:10.1016/j.amepre.2011.09.014.
Naik, R. P., and C. Haywood.
“Sickle cell trait diagnosis: clinical and social implications.” Hematology 2015, no. 1 (2015): 160-67. doi:10.1182/asheducation-2015.1.160.
Siddiqi, Azfar-E-Alam, Lanetta Jordan, and Christopher Parker.
“Sickle Cell Disease- The American Saga.” US National Library of Medicine National Institutes of Health, July 28, 2015.
The Editors of Encyclopedia Britannica.
2008. “Sickle Cell Anemia” Encyclopedia Britannica website, August 14. Accessed January 24, 2017. https://www.britannica.com/science/SickleCellAnemia
The Editors of Encyclopedia Britannica.
2016. “Tuskegee syphilis study” Encyclopedia Britannica website, January 8. Accessed April 1, 2017. https://www.britannica.com/event/Tuskegee-syphilis-study
Thompson-Miller, Ruth.
International Encyclopedia of the Social Sciences, 2nd ed., s.v. “Racialization.” Farmington Hills, MI: Gale Group, 2007.
Wesley, Kimberly M., Mimi Zhao, Yvonne Carroll, and Jerlym S. Porter.
“Caregiver Perspectives of Stigma Associated With Sickle Cell Disease in Adolescents.” Journal of Pediatric Nursing 31, no. 1 (2016): 55-63. doi:10.1016/j.pedn.2015.09.011.