This post was originally published on Defender Network
By Laura Onyeneho
September is Sickle Cell Awareness Month, and the American Red Cross is celebrating its one-year launch of the Sickle Cell Initiative.
They are spotlighting a critical need for a diverse blood supply to educate the masses about sickle cell disease and grow the donor base of first-time Black blood donors.
Sickle cell anemia is the most commonly inherited blood disorder in the United States and impacts African Americans at a more disproportionate rate than other ethnicities. People with the disease may face financial limitations, lack of insurance and access to proper care, significantly reducing their quality of life.
The intermittent pain and fatigue from coping with an inherited red blood cell disease can be debilitating. As systemic inequities in our health care system continue to persist, it becomes harder for individuals to seek proper care. The average life expectancy for those with severe cases of sickle cell is three decades shorter than for those without it.
“We’ve always had a diversity arm of what we’ve done trying to ensure that our blood supply matches our population,” said Rena Witherspoon, regional sickle cell account manager for the American Red Cross, North Texas Region. “This initiative is to ensure that we can treat these patients. When looking for blood products, the most compatible match will come from someone of the same race and ethnicity.”
In the initiative’s first full fiscal year, the number of first-time African American blood donors who gave with the American Red Cross increased by 60%. The organization is hosting blood drives across Houston and encourages the community to participate.
“The basis of this initiative is about education. The Black community must understand how and why their blood is unique, especially when treating sickle cell patients. We are looking for Black churches, HBCUs and high schools with a significant number of Black people. Come alongside us. Partner with us and host a blood drive.”
Why is it a public health issue?
Dr. Vinay Tubman, co-director of the Sickle Cell Disease Program of Texas Children’s Hospital, said that since the 1970s, progress had been made in improving survivability for sickle cell disease in pediatrics patients. About 96% of children with sickle cell disease will survive into adulthood.
Pediatric hematology providers are working to provide a good quality of life well into adulthood with few complications. However, Tubman said the ability to progress in adult hematology is limited. The average age for adults with sickle cell disease is in the 50s and 60s, and it hasn’t budged in the last couple of decades.
“The lack of access to care, knowledge, adult hematologists, lack of familiarity, lack of a community of other adults with sickle cell disease, are just a few examples of why we haven’t made the same amount of progress,” Tubman said.
“According to the CDC, about 100,000 people live with sickle cell in the United States. That estimate has been the same for nearly 20 years now. The numbers should change because we’ve seen progress in survival in pediatrics. Sickle cell disease research for decades has been underfunded, and it has received less funding from national organizations such as [National Institute of Health] than other disorders.
Treatments
Dr. Tubman said there are four FDA-approved therapies for sickle cell disease. Gene therapy, a newer treatment in the works to be FDA approved, would allow patients to be their own donors. Bone marrow transplants are one method to cure sickle cell disease by infusing healthy blood-forming stem cells into the body to replace bone marrow that’s not producing healthy blood cells from an outside donor.
In the case of gene therapy, bone marrow is taken from the patient to a lab where cells are modified to overcome the effects of the sickle cell gene and returned to the patient.
Myths and stigmas
Ijeoma Azubuko, a 39-year-old sickle cell advocate and founder of the Ruby Ball Foundation, has lived with the disease her entire life, as have her twin brother and younger sister. Throughout her childhood, she suffered chronic pain that would send her to the hospital. As she grew older, she knew no one outside her immediate family who had the disease, and her family was reticent about discussing such things in the open.
“I never knew what my genotype [heritable genetic identity] was. It was never discussed at home,” Azubuko said. “People are ashamed of the fact they have it, and when it comes to family planning, especially as an African woman, sickle cell disease is treated like a plague. It’s important to talk about it because when it comes to family planning, you don’t want to get into a relationship with someone else with the trait.”
There is also a stigma around the quality of life, substance and opioid misuse to treat pain, blood transfusions, and questions about whether people with the sickle cell trait will develop sickle cell disease.
Living with the disease isn’t a death sentence if appropriately treated. Some celebrities in the Black community live with it and still have a healthy, active lifestyle, like Tionne “T-Boz” Watkins of TLC, actor Larenz Tate, Mobb Deep rapper Prodigy and former Steelers wide receiver Santonio Holmes.
Why aren’t enough Black people donating?
Historically, some African Americans don’t trust hospitals. America has an ugly past of experimenting on Black patients without permission and treating them unethically. These examples are seen in the Tuskegee syphilis study and the case of Henrietta Lacks, the Black woman who died of cancer after being treated only for cells to be used for medical research without her family’s permission or knowledge. There is also a lack of understanding about blood replenishment after a donation.
Azubuko had a crisis in 2019 during a work assignment in Gabon (Central Africa). She developed respiratory issues so severe that she had to be airlifted to South Africa for proper medical treatment and a blood transfusion.
“I had to make a critical decision to receive blood, and I was able to get a match from someone of the same race as me,” she said. “When I was younger, I was skeptical about receiving blood. I didn’t want someone’s blood in my body. But now that I’m more educated around this, I’m a big advocate for blood transfusions.”
Do you have the trait?
Medical experts encourage people to contact their primary care physician’s office to see if they have sickle cell anemia. Your doctor will order a test describing the variant hemoglobins in your blood. It is imperative for women of child-bearing age because the disease can be passed down to children through their parents’ genes.
According to the CDC, newborns should be screened as early as 24-48 hours after birth, even if the child looks healthy. If left undetected and untreated, the disease can lead to severe health problems or death in early childhood.
What is sickle cell disease?
Sickle cell anemia is a disease that occurs when the red blood cells in the body are shaped like crescents, which block blood flow in the blood vessels of the limbs and organs. Blocked blood flow can cause pain and organ damage and raise the risk for infection.
SCD in the U.S. (Credit: CDC)
- About 100,000 Americans have SCD
- About 1 in every 13 Blacks have sickle cell trait
- About 1 in every 365 Blacks have SCD