Sickle Cell: Elevating Awareness, Driving Impact

April is National Minority Health Month. The American Red Cross is honoring this year’s theme, “be the source for better health,” by raising awareness about health disparities that disproportionately affect racially and ethnically diverse populations and how it’s working with partners to improve health outcomes of diverse communities through blood donation.

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. 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.

As a military child who grew up living on bases in Germany and the U.S., Kristina became eligible to donate blood with the Red Cross in October 2022 after the FDA lifted its deferral related to the risk of variant Creutzfeldt-Jakob Disease (vCJD) or mad cow disease for those who spent time in certain European countries between 1980 and 2001.

“My father is Afro-Panamanian, and my mother is German,” says Kristina, an administrative business analyst for the Red Cross. “I found out that I have the sickle cell trait [after donating blood and receiving my results] in the Red Cross Blood Donor App. I [shared my trait status with my family] and they were surprised because as far as we know, no one in my family has sickle cell disease.”

While Kristina has not experienced any symptoms similar to sickle cell disease, it is important for those who are sickle cell trait positive to discuss their results with a doctor to find out what it means for them.

“People with sickle cell trait may experience pain similar to that of persons with sickle cell disease when they participate in or are exposed to conditions that cause blood oxygen concentration to decrease, similar to that observed with highly aerobic physical activity, dehydration, or in areas of high altitudes,” says Dr. Scott. “De-oxygenation of red blood cells can trigger the sickling process – even in people with sickle cell trait."

Since discovering her sickle cell trait positive status, Kristin, who has Type B positive blood (which is often in high demand along with Type O blood), has been inspired to donate more. She has also donated platelets, tiny cells in blood that form clots, stop bleeding and help support expectant mothers, trauma, burn and cancer patients.

“If you have it and you can donate, you should,” she encouraged.

During National Minority Health Month in April and Black Maternal Health Week, April 11-17, “be the source for better health” by donating blood. Schedule an appointment by using the RedCrossBloodDonorApp, visiting RedCrossBlood.org or calling 1-800 RED CROSS (1-800-733-2767).

Those who come to give blood, platelets or AB Elite plasma April 8-28, 2024, will receive a $10 e-gift card to a merchant of choice. PLUS, be automatically entered to win a $7,000 gift card! There will be two lucky winners.