A leading Sickle Cell researcher in D.C. has issued a call to boost funding and awareness of the country’s most common genetic disease.
Dr. James Taylor, director of the Center for Sickle Cell Disease at Howard University, appealed as the nation recognizes September as National Sickle Cell Awareness Month, a time when doctors renew efforts to combat the illness.
D.C. maintains its title as the area with the highest per capita prevalence of sickle cell disease in the nation — more than 100,000 people in the U.S. have the illness, Taylor said.
“Understanding the demographics of Washington, D.C., it makes sense,” he said. “I’d like to see more resources put into this area, for if nothing else, offering patients hope and relief from a terrible condition.”
Sickle cell is caused by a mutation in a patient’s hemoglobin gene that contorts healthy, round red blood cells into a sickle shape. As a result, the malformed cells can clog blood vessels and block oxygen to tissues and organs, causing severe pain and anemia.
The condition is found mostly in Black Americans or people with African heritage. Doctors in the U.S. first described sickle cell in 1910, amid medical segregation that barred Black people from receiving treatment in white hospitals. Then, in the 1950s, research took on a large swath of illnesses and saw significant scientific advancements.
But the medical community largely ignored sickle cell disease, Taylor told WTOP, partially because of a long history of healthcare discrimination in the U.S. and a lack of early research still lingers.
“There is a whole history behind this,” Taylor said. “It went largely unstudied and untreated. And it’s the only disease that required a piece of federal legislation to compel its study in 1972. We really are living with the legacy of that era of segregated medicine.”
Sickle cell research receives about 30% more funding than what it received between 1972 and 1975, he said.
Researchers have recently unveiled some promising new therapies and treatments. For instance, patients have access to four FDA-approved drugs aimed at relieving anemia and pain linked to the condition.
Doctors have prescribed opioids to ease severe pain, which some worry may increase the possibility of addiction among some Black Americans.
“Opioids are a symptomatic treatment for these terrible episodes of pain. The pain has been described as worse than breaking your leg,” Taylor said. “But the beauty of the treatment that we now have is that they’re designed to get at the root cause of the painful episodes.”
Also on the horizon are gene editing and gene therapy, which uses stem cells to potentially cure the illness, he said.
“In short order, we may have this,” Taylor said of gene therapy, which is currently under evaluation for FDA approval.
Taylor says more research and resources could help doctors close the gap in finding a cure for the condition, and patients in D.C. could directly benefit.
“I’d like to see more research concentrated in the District, obviously,” he said. “It means hope and relief from a terrible condition.”
