The Orangeburg Area Sickle Cell Anemia Foundation has a mission of promoting awareness of sickle cell disease, an incurable and sometimes painful blood disorder. Its services include genetic counseling, prescription assistance, emergency patient assistance, testing, transportation, referrals and community education, including health fairs.
A highlight of the foundation’s campaign is an annual walk, which was held Saturday with the theme, “Taking a step towards breaking the sickle cell silence.”
South Carolina Republican U.S. Sen. Tim Scott has been out front in battling sickle cell disease. His Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act, approved this past year, increases efforts to collect data to accurately measure the number of Americans affected by sickle cell disease. And it reauthorized through 2022 the Sickle Cell Disease Treatment Demonstration Program, which includes expanding support services for adolescents making the transition to adult care.
Sickle cell disease -- also called sickle cell anemia -- 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.
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. At least 17 innovative therapies (gene, cell, and otherwise) are currently in development to treat SCD, but current treatment options are limited, and access gaps are sure to persist, even as cures and other promising medications come to market.
The program created by the legislation allows the U.S. Department of Health and Human Services 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.
As the one-year anniversary of the bill's passage approaches during September’s observance of Sickle Cell Disease Awareness Month, Scott stated: "Sickle cell disease has been overshadowed for years, but I have hope that through consistent advocacy, we can move towards identifying a cure. For some, this disease can result in a lifetime of pain, and although we have known about it for more than 100 years, treatments continue to be limited. I am grateful that my bill was signed into law last year, but we have more work ahead of us to ensure that we are able to find a way to fight this disease.”
Emphasis on sickle cell disease is good news to the sufferers looking for relief and to those working to prevent it.
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.
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