Sickle Cell Disease: Disproportionate Impact, Medical Neglect, and the Urgent Need for Change

By: Ahmir Davis, August 2nd 2025

Sickle cell is one of the greatest challenges presented to modern medicine not only because of its incurable & life long conditions, but because of the lack of dedicated research towards finding a treatment plan. Sickle cell is a hereditary condition where two different and possibly faulty hemoglobin gene traits are passed down from two parents assembling and forming hemoglobin S within the child otherwise known as sickle cell. Natural red blood cells contain a protein called hemoglobin which has a purpose of carrying oxygen throughout the body (U.S. Department of Health and Human Services, 2024). The sickle cell disease can be an extremely painful burden placed on the patient to have to deal with for the remainder of their lives. When a person develops sickle cells the Hemoglobin S gene trait causes the red blood cells to mutate and change its set shape almost resembling a sickle hence where the name for sickle cell disease was created. The sickle formation of red blood cells can create a world of problems for the patient but typically blood vessels become clogged causing painful blood clots & organ damage. According to the U.S. Department of Health and Human Services (2024), one of the side effects of having sickle cell is a process called Hemolysis which is where the built up blood clots and cells suddenly burst within the patient's body causing immense pain, this is due to sickled cells lasting only between 10 through 20 days compared to the average life span of 90-120 days (U.S. Department of Health and Human Services, 2024).

The Sickle cell trait is believed to have been developed as the body's mechanism against malaria because the malaria parasite isn’t able to form or spread properly within mutated sickle shape (Williams, 2016). This can be connected to the disproportionate rates at which countries within Sub Sahara Africa & its descendants have been plagued with sickle cell which at this point couldn’t be considered a rare & unexpected gene mutation. According to the Centers for Disease Control and Prevention (2024) article “Data and statistics on Sickle Cell Disease” at least one hundred thousand people are affected by sickle cell with more than 90% being classified as African American. Over 4000 of them residing within New Jersey and 40% requiring state given medicare according to the article “Let’s change how we treat sickle cell disease in New Jersey” (Office of the Governor, 2022). The American health care system such the National Institutes of Health, CDC, and Pharmaceutical Industry does research on these rates at which a minority makes up 90% of all total patients yet still doesn’t provide the adequate medical care which not only treats the patient but also provides a system built to target the root issue to hopefully bring the sickle cell rates down, a disease which robs African Americans on average 20 years of their life span (Centers for Disease Control and Prevention, 2024).

Other than individually treating each case of sickle cell it would be effective to throughout a child's life from the ages of 2-16 get them screened for sickle cell so that they are aware of whether they have the sickle cell trait according the Centers for Disease Control and Prevention (2024) article “Data and statistics on Sickle Cell Disease”. Getting a child screened throughout their adolescent life can help prevent the furthering the grip sickle cell has within the African American community. People who were born with the sickle cell trait should publicize their condition in order to make sure it isn’t accidentally passed down throughout the generations. While it's important to be informed of the possibility that the sickle cell gene mutation could possibly arise within carrier children, it's also just as important to not view sickle cell as an end all be all disease that completely takes away their ability to love and live (Grosse et al., 2011).

In conclusion the sickle cell disease is an under represented and cared for, incurable yet treatable, hereditary disease that affects over 100 thousands Americans with 90% of the carriers being African American which is an inconceivably disproportionate rate. The disease is really a gene mutation in which the body's red blood cells mutate and change shape almost forming a sickle, this is because of the hemoglobin protein which is supposed to deliver needed oxygen throughout the body mutating and creating the variant Hemoglobin S otherwise known as sickle cell. Sickle cells originally mutated with the intention of defending the body against the parasites caused through Malaria. Through malaria being extremely present within sub sahara Africa the sickle cell mutation created a ripple effect spreading throughout Africa and all its descendants post diaspora crediting to reason as to why 90% of all cases within America being African Americans (Williams, 2016). The life long complications and pain of sickle cell may deter people from wanting to pass on sickle cell mutation but it's important to treat the carriers with humane respect, instead society should shift the attention and blame towards a system which is overlooking the issue causing many to live an apparently unfulfilling & medically dependant life (National Institutes of Health, 2022).

Biliblography Sources - https://www.cdc.gov/sickle-cell/data/index.html#:~:text=Sickle%20cell%20disease%20in%20the%20United%20States&text=SCD%20occurs%20in%20about%201,gene%20from%20only%20one%20parent).  The article Data and statistics on Sickle Cell Disease produced by the CDC was important towards the goal of my project proposal because it lists key  and accurate data on the percentages of African Americans that have Sickle cell disease while also listing other possible overlooked aspects such as other Health care access organizations. https://pmc.ncbi.nlm.nih.gov/articles/PMC6858853/    The article “Sickle Cell Disease in Sub-Saharan Africa” by Thomas N Williams was important towards my project proposal of the disparate rates at which African Americans develop the Sickle Cell mutation because of its in depth explanation and theory on the original start of the sickle cell mutation. 

 The article “Sickle Cell Disease in Africa A Neglected Cause of Early Childhood Mortality” by the many professors : Scott D. Grosse, Isaac Odame, Hani K. Atrash, Djesika D. Amendah, Frédéric B. Piel, Thomas N. Williams was directly important for the creation of my project proposal on the disproportionate rates that the sickle cell mutation is found within African Americans by not only offering data insight but also various graphs that convey so much needed information especially towards the affected groups. Researchers identify the high costs of living with sickle cell disease . The article “Researchers indentify the high costs of living with sickle cell disease” produced by the NIH (National Institues of health) on May 16th, 2022 was important for looking through the economic lens of sickle cell treatment. This article provided data based around how much someone within America would on average have to pay for Sickle Cell treatment with and without insurance. 

Governor Murphy Signs Legislation Establishing Sickle Cell Disease Pilot Program The article “Governor Murphy Signs Legislation Establishing Sickle Cell Disease Pilot Program”  was imporant towards the overall structure of my project because it offers information around New Jersey residents, such as the amount of sickle cell carriers, and what type of health care they recieve from the government. The article also proposes ways that the New Jersey state government is taking steps into helping ease the finical struggle of sickle cell.