U.S. Sen. Tim Scott, R-S.C., will co-chair a congressional caucus with an outspoken Democrat to raise awareness about sickle cell disease, and Scott is on the hunt for a national spokesman to join their bandwagon.
What is sickle cell disease?
Sickle cell disease encompasses a range of hereditary blood disorders, the most common of which is called sickle cell anemia.
It is under-funded compared with other genetic diseases, such as cystic fibrosis, and patients suffering from sickle cell disease often are stigmatized as habitual pain medication abusers.
"We really need to get rid of the patient stigmatization," said Dr. Julie Kanter-Washko, the director of sickle cell disease research at the Medical University of South Carolina. "These patients have real problems and need to be treated as real people."
Sickle cell disease distorts the body's red blood cells into an "S" or a sickle shape, according to the National Institutes of Health, causing the misshapen cells to block blood flow. Symptoms include chronic pain and internal organ damage.
Best estimates suggest that one in 500 African-Americans suffer from sickle cell disease.
The average life expectancy for these patients is mid-40s, according to the Sickle Cell Disease Association of America.
Data compiled by the S.C. Department of Health and Environmental Control show 63 infants were born in 2012 with confirmed cases of sickle cell disease.
South Carolina started tracking new cases of the disease only in 2000, making it difficult to determine how many adults are living with it.
He needs a Darius Rucker or a Bill Cosby, he said. Those are just two of the names on Scott's celebrity short list that he thinks may be willing to lend a hand as the government and private sector double down to find a cure for this genetic condition that disproportionately afflicts African-Americans.
In sickle cell disease, red blood cells are shaped like a sickle instead of being round, causing pain episodes when the misshapen cells block blood flow through tiny blood vessels to the chest, abdomen and joints. They carry less oxygen than normal red blood cells. The disease also is likely to stunt growth in infants.
Neither Rucker nor Cosby suffer from sickle cell disease, but Scott said almost every African-American knows someone who does.
"Sometimes you need some iconic figure ... someone who has the drawing power that can bring needed attention to something that impacts hundreds of thousands of Americans," Scott said.
It's hard to say how many hundreds of thousands that actually is. There's no national sickle cell registry, and that's just one of the problems with the disease. South Carolina only started tracking new cases of it in infants in 2000, even though the disease has been identified for 100 years, making it nearly impossible to estimate how many adults in this state suffer from the disease.
Julie Kanter-Washko, a physician at the Medical University of South Carolina and its director of sickle cell disease research, estimates that one in eight African-Americans carry a sickle cell trait, which is different than living with a sickle cell disease diagnosis.
There isn't enough research to know if these carriers experience any of the symptoms that patients suffering from the full-blown disease deal with, she said, but there is anecdotal evidence to suggest it's possible that they might.
"It hasn't been studied appropriately," Kanter-Washko said. "It's a huge issue."
She is planning to participate in a national dialogue with the federal Food and Drug Administration next month about these issues.
She also believes Scott, whose mother, brother and nephew carry a sickle cell trait, can help.
"This needs national attention, and I'm unbelievably pleased that he is bringing this the light it needs," she said.
Scott prematurely announced on Monday that he will co-chair a joint caucus on sickle cell disease with U.S. Rep. Charles Rangel, D-N.Y.
"I let the cat out of the bag," he said. "We have not even had our first meeting yet."
Scott was appointed to the U.S. Senate by Gov. Nikki Haley after former Sen. Jim DeMint left the office early in 2013.
Scott, who faces his first campaign to keep the seat this fall, was adamant that finding a cure for sickle cell disease cannot be accomplished with the government's money.
"Frankly, I think this is curable. The amount of attention it's received is miniscule at best," he said. "My goal is to create a stream of consciousness around the issue that will bring in the resources. This is a long road. This is going to take a lot of time and effort."
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