The Orangeburg Area Sickle Cell Anemia Foundation’s annual walk in 2017 carried the theme, “Taking a step towards breaking the sickle cell silence.”
Two U.S. senators are stepping up to help in a call to action against the disease.
Sickle cell disease -- also called sickle cell anemia -- is a painful, disabling blood disorder. The disease gets its name from the shape of the red blood cells in a person with the disease. The red blood cells in those patients are crescent, or sickle-shaped, as opposed to the normal round disc-shaped red blood cells that can easily move through vessels and arteries.
Complications can be treated and pain medications given, but the sickling of the cells cannot be reversed.
Sickle cell anemia is not contagious and the only cure is a bone marrow/stem cell transplant. But those transplants are extremely risky and can result in serious side effects, even death.
U.S. Sens. Tim Scott, R-S.C., and Cory Booker, D-N.J., have introduced a new initiative, the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act. With no national framework in place to accurately measure the number of Americans affected by SCD, the bipartisan legislation would increase efforts to collect data on the disease and reauthorize the Sickle Cell Disease Treatment Demonstration Program.
"This legislation marks a significant step forward in our efforts to combat sickle cell on all fronts -- research, surveillance, prevention and treatment,” Scott said. “We owe it to those suffering every day to do everything possible to find a cure.”
Booker said, "Sickle cell disease is a stark example of the disparate health services available to African-Americans compared to their white peers, with devastating effect. Despite being one of the most common genetic and blood diseases, and the fact that we have known about it for more than 100 years, Americans with sickle cell disease continue to face a variety of barriers when trying to access care. Compare that to other diseases that impact a similar or even smaller number of people, which receive more attention, and at times, more resources to help patients."
"It's long past time we start treating sickle cell disease as the serious and debilitating illness it is and allocate the necessary resources to monitor, research and treat it," Booker said.
While the CDC estimates 100,000 Americans suffer from sickle cell disease, the exact figure is unknown because of limited efforts to collect data on the disease. The program created by the legislation would allow HHS to issue grants to no more than 20 eligible entities (defined as states, state health or public health departments, and institutions of higher education) for the purposes of:
- Collecting data on the demographics and prevalence of sickle cell disease.
- Conducting public health initiatives with respect to the disease.
- Identifying and evaluating strategies for SCD prevention and treatment.
The bill also reauthorizes the SDTDP through 2022 with $18 million, which includes expanding support services for adolescents making the transition to adult care.
New emphasis on sickle cell disease is good news to the sufferers looking for relief and to those working to prevent it.
As Scott said, "It is critical that we understand the full breadth of what we're facing in the fight to cure sickle cell disease.”
The Orangeburg Area Sickle Cell Foundation Inc. at 825 Summers Ave. is a non-profit foundation serving Aiken, Allendale, Bamberg, Barnwell, Calhoun and Orangeburg counties. For more information, call 803-534-1716.