With Michael R. DeBaun, M.D., and Republican Sen. Jim Talent standing proudly in the background, 10-year-old Isaac Singleton Jr. recently told a crowd of reporters and community members at the Sickle Cell Disease Awareness Stamp Dedication at the Saint Louis Main Post Office what life is like with sickle cell disease.
“I want you to know me, and how I deal with sickle cell disease,” Singleton said. “Sickle cell hurts, and sometimes I have to stay in the hospital for a long time. I need to be careful when I play basketball because I get tired faster than other kids.
“I’m excited about this stamp because it will help more people learn about this disease.”
Isaac hasn’t been in pain since the start of this school year — and that’s allowed him to dedicate his time and energy toward campaigning for fifth-grade class president at Gateway Elementary School.
The commemorative postage stamp aims to increase awareness and educate the public about sickle cell disease and to encourage early testing.
Sickle cell disease, an inherited disorder of the red blood cells, is the most common genetic disorder in African-Americans, but it affects other ethnic groups as well. The disease affects one in 400 African-American infants — and 20 percent of those children will suffer a silent stroke before they finish high school.
In sickle cell disease, red blood cells change to a curved, or sickle shape, instead of the normal, round shape. Sickle cells become stuck in blood vessels, causing damage to tissues and organs, which can be extremely painful.
In addition to pain, the most common afflictions associated with sickle cell disease are strokes, kidney and spleen dysfunction, chronic anemia and increased risk of bacterial infection.
Talent told the crowd at the stamp unveiling ceremony that sickle cell disease has lived in the shadows of other diseases far too long.
“This stamp helps raise visibility and shows the community that we can take on this disease and beat it,” he said. “Sickle cell disease has been under the surface for far too long. It’s time to put it under the national spotlight.”
And this fall Talent did just that when he announced that President George W. Bush signed the Sickle Cell Treatment Act. The legislation, initiated and led by Talent, aims to treat and expand services for patients with the disease.
Talent became an advocate for sickle cell disease after he visited St. Louis Children’s Hospital and toured the sickle cell disease unit two years ago.
The comprehensive health-care legislation will increase funding for treatment and research efforts, expand awareness about the disease and provide counseling about who is at risk for having a child with the disease. One in 12 African-Americans carry the gene for sickle cell disease and can have a child with the disease.
“The Sickle Cell Treatment Act is the most significant piece of health-care legislation for this community in 35 years,” said DeBaun, associate professor of pediatrics and of biostatistics.
DeBaun worked closely with Talent to craft the bill that is now law.
“I’m grateful for Senator Talent’s unyielding support to make a difference for those affected by sickle cell disease,” DeBaun said. “This law will offer hope to millions of children and their parents who deal with this disease daily.”
The legislation also enhances the number of services available to sickle cell disease patients by allowing states to receive a federal 50-50 funding match for treatment expenses such as genetic counseling, community outreach and education.
Additionally, the law creates 40 sickle cell disease treatment centers across the country and establishes a National Sickle Cell Disease Research Headquarters through the U.S. Department of Health and Human Services.
Singleton’s mother, Everline, explained that the bill will help her son and family live stronger lives. “Sickle cell disease affects our family’s decisions every day,” she said.
“This bill will help families like ours have access to education and treatment that we need to stay healthy.”