There is no national registry for persons with sickle cell disease. Newborn screening programs continue to provide us with ongoing statistics regarding the incidence of sickle cell disease and trait in the U.S.
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Sickle Cell DISEASE National Statistics
Nationally, it is estimated that more than 80,000 Americans are living with sickle cell disease, according to the National Institute of Health (NIH, 2007).
1 in 375 African Americans are living with sickle cell disease.
1 in 1100 to 1400 Hispanics are living with sickle cell disease.
1 in 58,000 Caucasians are living with sickle cell disease.
Sickle cell trait, the healthy carrier state for sickle cell disease, occurs in approximately 1 in 12, or 8 percent of African Americans.
The sickle gene is also found in people from South and Central America, the Middle East and the Mediterranean.
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Sickle Cell TRAIT
In the United States
More than 70,000 people have sickle cell disease.
Sickle cell disease occurs in 1 in every 500 African American births.
2 million people have sickle cell trait.
1 in 12 African Americans has sickle cell trait.
It is estimated that over two million Americans are sickle cell trait carriers.
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Death and mortality statistics for Sickle Cell Anemia:
Deaths from Sickle Cell Anemia: 501 deaths (NHLBI 1999)
Death rate extrapolations for USA for Sickle Cell Anemia: 500 per year, 41 per month, 9 per week, 1 per day, 0 per hour, 0 per minute, 0 per second. Note: this extrapolation calculation uses the deaths statistic: 501 deaths (NHLBI 1999)
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The Cost to Society:
Sickle cell disease is a major public health concern. From 1989 through 1993, there were an average of 75,000 hospitalizations due to sickle cell disease in the United States, costing approximately $475 million.
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WHO IS AFFECTED?
In the United States people are often surprised when they learn that a person who is not African American has sickle cell disease. The disease originated in at least 4 places in Africa and in the Indian/Saudi Arabian subcontinent. It exists in all countries of Africa and in areas where Africans have migrated.
It is most common in West and Central Africa where as many as 25% of the people have sickle cell trait and 1-2% of all babies are born with a form of the disease. In the United States with an estimated population of over 270 million, about 1,000 babies are born with sickle cell disease each year. In contrast, Nigeria, with an estimated 1997 population of 90 million, 45,000-90,000 babies with sickle cell disease are born each year.
The transatlantic slave trade was largely responsible for introducing the sickle cell gene into the Americas and the Caribbean. However, sickle cell disease had already spread from Africa to Southern Europe by the time of the slave trade, so it is present in Portuguese, Spaniards, French Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, Turks and Cypriots. Sickle cell disease appears in most of the Near and Middle East countries including Lebanon, Israel, Saudi Arabia, Kuwait and Yemen.
The condition has also been reported in India and Sri Lanka. Sickle cell disease is an international health problem and truly a global challenge.
All these countries must work together to solve the problem and find effective treatments and ultimately a cure. The knowledge and expertise in the management of sickle cell disease acquired in the technologically advanced countries must be shared with the less developed countries where patients die at alarming rates.
(Excerpt from A Comprehensive Guide to SCD & SCDAA Services)
