Historic fear cripples blacks in fight against Sickle Cell disease
OPINION - The Valerie Fund, a non-profit organization based in New Jersey, provides comprehensive health care services to children with solid and brain tumors, leukemia, sickle cell disease and other blood disorders close to home...
A sea of green shirts worn proudly by the patients of The Valerie Fund will flood Verona Park in Verona, NJ, on June 14th in the efforts to raise over a million dollars for children with cancer and blood disorders.
The Valerie Fund, a non-profit organization based in New Jersey, provides comprehensive health care services to children with solid and brain tumors, leukemia, sickle cell disease and other blood disorders close to home. Despite the ray of hope that shines brightly throughout the entire park on this special day, the little soldiers battling sickle cell disease need your undivided attention.
I am one of their comrades, since I too fight with sickle cell, and today, I am their voice. One way that we can change this epidemic is to create a new culture of blood donation among the African-American community. Some may ask why sickle cell should be a topic of discussion among people of color. The reason is simple. Sickle cell disease almost exclusively affects people of African descent and is our most common genetic disorder.
One in twelve African-Americans currently has the Sickle Cell Trait; children of two parents with the trait have a 25% chance of inheriting the disease. One in five hundred African-Americans has the disease, an estimate of 90,000 to 100,000 people according to the Center of Disease Control (CDC). Sickle cell requires continuous medical attention beginning at infancy to decrease the risk of stroke, organ damage and even death.
The disease distorts red blood cells, causing them to become sickle-shaped, which prohibits proper oxygen flow throughout the body. This produces what is call a sickle cell crisis resulting in agonizing pain from the body’s attempt to pass oxygen in small blood vessels, leaving the youngest patients hospitalized and requiring medications as powerful as morphine. In addition, many patients require blood transfusions that help prevent stroke and reduces pain. However, blood from people of African ancestry is needed in order to give sickle cell patients the best chance at survival.
The African-American community currently donates blood at a much lower rate than any other population of people, which leads to a big gap in blood supply. Some donors mention a fear of needles and the possibility that needles are unsafe. Is this a good enough reason for us to ignore the needs of our people? No. The reason that is the most logical is the long historical distrust of the medical community.
According to the National Institute of Health, African-Americans’ mistrust of the healthcare system prominently stems from the aftermath of the Tuskegee Syphilis Study where 399 African American men between 1932 and 1972 were denied treatment of syphilis and were deceived into thinking they were being treated for “bad blood.” There was no intention of curing their syphilis.
Yes, it is understandable that this long history of distrust caused our lack of blood donation. However, this needs to cease. We are currently in a new era of healthcare where we must work hand in hand with physicians and other healthcare administrators instead of working against them. We now have that power, and we can get our strength from The Valerie Fund, which is trusted by many sickle cell patients in New Jersey.
The Valerie Fund at Newark Beth Israel hosts the largest children’s sickle cell programs in the state. Its six centers treat the majority of New Jersey’s sickle cell patients. They are our allies. The physicians, nurses, social workers and educational liaisons all work together to provide top notch care for its sickle cell patients. Being a Valerie Fund kid for over 16 years, you can trust me when I say that without the support of The Valerie Fund, I would not be as confident in myself as I am or as capable of managing my own health care and advocating for myself. So please come walk with me and other patients like myself to spread awareness of Sickle Cell Disease and support the families of The Valerie Fund. Every Drop Counts.
