Title
Authorizing Council's Committees on the Public Safety and Public Health and Human Services to conduct joint public hearings to investigate funding opportunities for the research towards the cure of Sickle Cell disease underway at the Children's Hospital of Philadelphia.
Body
WHEREAS, Sickle cell disease is the most common inherited disorder among African-Americans. Roughly, 1 in 12 African-Americans is a silent carrier of the disease and it affects 1 in 375 births. It is also common in those of Caribbean Ancestry. It has also been found in Latin America, the Mediterranean, the Middle East and India; and
WHEREAS, There are currently 100,000 individuals with sickle cell disease in the United States alone and many millions worldwide; and
WHEREAS, Sickle cell disease is caused by a mutation of the beta-globin gene which turns a normally soft, round red blood cell into a stiff, sickle-shaped one. These sickle cells tend to get stuck in and block small blood vessels, leading to debilitating pain crises. These blockages, which over time will damage body organs, can also cause fatal strokes and heart attacks. About 15% of children with sickle cell require frequent blood transfusions to prevent stroke. With few normal red blood cells to carry oxygen to the body, people with the disease are easily fatigued. This oxygen deprivation can also damage organs; and
WHEREAS, Living with sickle cell disease is a constant struggle and the burden on children is particularly heavy. In addition to living with extreme pain, affected children are prone to chronic infections, which can be life threatening; and
WHEREAS, It requires constant vigilance to keep children with sickle cell disease healthy. Often these children live with the difficult knowledge that their lives may be cut short: although research efforts are underway to develop new treatments that we hope will extend their lives significantly, the disease is often fatal in one's 40s; and
WHEREAS, ...
Click here for full text