Today is not just Juneteenth. It is also Sickle Cell Awareness Day, designated by the U-N.
Sakiyyah Burwell Darden is a sickle cell warrior and community health worker at The Sickle Cell Association Of New Jersey. Each sickle cell warrior requires up to 100 units of blood transfusions each year, according to Mary LaMar, head of the association.
There is still no universal cure available to everyone who has the disease, but there have been advances, said LaMar.
“We’re very excited about gene therapies that are the most recent advances in sickle cell disease treatments,” she said. “There are two approved gene therapies and those are new approved therapies that are potentially curative.”
The therapies are Casgevy and Lyfgenia. Both treatments involve harvesting a patient's own stem cells, genetically modifying them in a lab, and returning them via a transplant.
But LaMar said it’s not that simple.
“Everyone is not eligible for those treatments, the gene therapies or the bone marrow transplant, because of many many different factors, it may be that they need a match, or they may not have enough pain crises,” she said.
Sickle Cell Disease is the most common genetic disorder in the US. More than 100,000 people have it. Another 2,000,000 have the sickle cell trait. People with this disease are living longer, though, and that’s a problem for medical care, said LaMar.
“Treatment has gotten better but we haven’t had enough adult providers who are knowledgeable in sickle cell to take on those individuals who are living longer and hopefully healthier lives,” she said.
Life expectancy for those with sickle cell is now 54 years.