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patient education

Q & A: Medicaid coverage for sickle cell disease

key information

source: National Health Law Program

year: 2013


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 African Americans, 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.

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