More than 100,000 people in the U.S. have sickle cell disease, an inherited blood disorder that has a 1 in 4 chance of being passed down from parents who each carry sickle cell trait. The disease disproportionately affects individuals of African descent, many of whom rely on routine blood transfusions as an essential treatment to prevent life-threatening complications. In fact, a single patient with sickle cell disease can require thousands of blood transfusions throughout their lifetime. Patients with sickle cell disease, the majority who are of African, Latin and Mediterranean descent, can experience severe anemia, reoccurring pain crisis and life-threatening complications that can require blood transfusions. According to the American Society of Hematology, 1 to 3 million Americans have sickle cell trait. However, since universal newborn screening for sickle cell disease was not implemented in all 50 states, Puerto Rico and the U.S. Virgin Islands until 2006, many individuals remain unaware of their sickle cell trait status. Factor in that most people with sickle cell trait do not experience symptoms of sickle cell disease, this can contribute to them inadvertently passing the sickle cell gene on to their children. In 2012, pharmacist Dr. Lametra Scott discovered her sickle cell trait positive status during a prenatal exam visit. She was informed that because she and her husband both carried the sickle cell trait, their son had a 25% chance of being born with sickle cell disease. After multiple tests following his birth, she and her husband learned their son indeed had sickle cell disease. “Advocacy for sickle cell trait testing is important for me because my lack of knowledge regarding my own sickle cell trait status robbed me of the opportunity to take advantage of technological advances offered by way of IVF and PGD that could have been used to break the cycle of sickle cell disease in my family,” says Dr. Lametra Scott, founder of Breaking the SSickle Cell Cycle Foundation, a non-profit dedicated to promoting sickle cell disease and sickle cell trait awareness within diverse communities.
“Because sickle cell disease impacts people who represent all ethnic groups and has many faces, it is important for all individuals to not only be sickle cell trait tested but also educated on how the results can impact their lives.” With the help of community partners like Dr. Scott and the Breaking the SSickle Cell Cycle Foundation, the Red Cross launched its national Sickle Cell Initiative in 2021 with the goal of increasing blood donations in Black communities, as 1 in 3 African American blood donors are a match for those living with sickle cell disease. In an effort to provide presenting donors who self-identified as African American with an additional health insight regarding their sickle cell trait status, the Red Cross set out to provide free sickle cell trait screenings and expanded screening to include donors who self-identify as multiracial in 2023. Since the launch of the Sickle Cell Initiative, the Red Cross has provided more than 138,000 sickle cell trait screenings to donors – many who were unaware of their trait status, like Red Crosser Kristina Ogilvie. Why Are African American Blood Donors Important Patients with sickle cell disease may rely on regular blood transfusions throughout their lives to prevent sickle cell complications such as organ and tissue damage, severe pain, and strokes.
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10 The Acumen
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