Q & A: Medicaid Coverage for Sickle Cell Disease

Question: I have a client who was recently diagnosed with sickle cell disease. I heard that Medicaid now provides coverage for treatment of sickle cell. Is that true? Can you explain the program to me?
Answer: In 2004, Congress passed and the President signed legislation creating a new optional Medicaid benefit for sickle cell disease. The legislation provides flexibility for states in covering blood transfusions, genetic counseling and testing and other treatments and services to individuals with sickle cell trait and sickle cell disease. Additionally, federal matching funds are available for education and outreach activities for those individuals who carry the sickle cell gene and may qualify for medical assistance.
Approximately 2.5 million people in the United States carry the sickle cell trait. Of those, about 70,000 have sickle cell disease. Sickle cell disease is most commonly found in AfricanAmericans, though Latinos and individuals of Caribbean, Mediterranean and Middle Eastern descent are also known to have it. Between eight and ten percent of African-Americans carry the sickle cell trait.1 In the United States, 1800 babies are born every year with sickle cell disease. Globally, 300,000 infants are born annually with the disease.
Sickle cell disease (SCD) is an inherited defect in blood that causes normally round blood cells to take on a sickle shape. Sickle-shaped blood cells clog the blood stream, creating obstructions that result in severe medical complications. Individuals with sickle cell disease are at risk for a number of health problems, including infections, acute lung problems, pulmonary disease and pulmonary hypertension, and kidney failure. Children with SCD can experience frequent pain episodes, during which time spleen enlargement and other life threatening complications can develop. Children with SCD are at increased risk for a stroke, which occur in thirty percent of children with SCD and can strike children as young as 18 months.


The disease can be detected in newborns through an inexpensive blood test. Currently, all fifty states and the District of Columbia require universal screening of newborns for sickle cell disease.2 Sickle cell disease, because of its complex nature, requires comprehensive as well as continuous care for children and adults. Necessary services include newborn screening, genetic counseling, and education of patients and their family members.3 A preferred treatment for children with SCD is the use of prophylactic penicillin to prevent the onset of severe bacterial infections, which can result in increased sickling of red blood cells.4 One of the most effective treatments for children and adults is the provision of monthly blood transfusions by which sickle blood cells are removed and replaced with normal blood cells.

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