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Caucus seeks to raise awareness, address healthcare barriers

Ursula V.Battle | 5/9/2014, noon
The Centers for Disease Control and Prevention (CDC) estimates that Sickle Cell Disease (SCD) affects 90,000 to 100,000 Americans.
Representative Charles Rangel (D-NY) was instrumental in the formation of the first-ever Congressional Caucus for Sickle Cell Disease. (Courtesy SDCAA)

Banks is the newly elected president and CEO of SCDAA, which was created out of a 1971 meeting to pursue the vision of a national coordinated approach to addressing issues related to SCD.

“Our focus must be on treatment as we search for a cure,” said Banks. “I hope we are close to a cure, but the focus for us is treatment. We do not have enough people who know about the disease, and people need to see the reality of this disease. We need to raise more funds for treatment and research. The more we see, hear, and read about SCD, the more attention we can bring to it.”

Banks also talked about some of the treatments for SCD.

“One of the major protocols are new SCD provider guidelines coming through the National Institutes for Health to treat this disease. Hydroxyurea is still out there in terms of treatment, and there are some new drugs, which are showing progress. However, there is an overwhelming shortage of hematologists that focus on sickle cell.”

She added, “In addition, most patients don’t have a medical home or specialist that is monitoring their care. Most live in the emergency room. However, when they go to the emergency room, the costs are astronomical. In addition, once SCD patients get older, there is no transition care.”

According to Banks, a national walk will be held at Lake Montebello on August 30, 2014, and the SCDAA will host a convention October 1 through October 4, 2014 at the Hyatt Inner Harbor Hotel.

For more information visit www.sicklecelldisease.org.