According to a story from apnews.com, sickle cell disease gets very little research or funding despite that fact that about 100,000 people in the U.S. are affected by it. The disease was discovered about a century ago, but it is widely overlooked and receives minimal attention even when compared to other rare diseases. Sickle cell disease patients have limited treatment options, and lack of awareness about the condition can lead to poor care at hospitals.
Sickle cell disease is a genetically linked blood disorder in which an abnormality of the hemoglobin found in red blood cells leads to stiffened, misshapen cells that take on an unusual, sickle-like appearance. The common and severe type of sickle cell disease is sickle cell anemia. Symptoms begin to appear at about six months, and can include swelling of the hands and feet, anemia, stroke, an increased likelihood of bacterial infection, and bouts of severe, agonizing pain, often termed “sickle cell crisis.” These episodes can be triggered by changes in temperature, high altitude, stress, and dehydration, but a trigger is not always present. Life span of patients is reduced at about 40-60 years. To learn more about sickle cell disease, click here.
There is no doubt that sickle cell disease has been widely ignored, even when compared to other conditions that affect less people. Cystic fibrosis, for example, receives from seven to eleven times more funding per patient compared to sickle cell, even though it only affects around 30,000 people in the U.S. Dr. William Zempsky is convinced that a significant factor is that the disease primarily affects the black community. Members of historically marginalized racial groups are less likely to have the resources necessary to help fund research, get informed about their illness, and obtain proper treatment.
There is also no national registry for sickle cell disease patients, which can be a critical resource for researchers. The lack of this registry alone can discourage scientists from wanting to study sickle cell. Only two medications have been developed in order to treat sickle cell disease, and it has been over a decade since a new one has been introduced.
While there have been some developments in sickle cell disease research—doctors in Paris were able to cure someone with the disease using gene therapy, for example—more study and treatment options are direly needed. Additionally, there are no treatments that successfully prolong the survival of patients. More must be done in order to resolve this painful and dangerous illness.
