It is estimated that Sickle Cell Disease (SCD) affects about 20,000,000 people worldwide.
The NIH believes about 100,000 people in the United States have SCD.
It occurs in 1 out of every 365 black births in the US and about 1 in 13 black Americans have the trait. If both parents have the trait, for each pregnancy , the baby has a 25% of having the disease. 50% have a chance of having only the trait and 25% may not have the disease or the trait. However, some families may have the majority of their children being born with the disease.
In Ohio about 100-200 babies are born with sickle cell disease each year. After a positive screen for SCD/trait at birth, the infant is supposed to get a confirmatory test. In Ohio, one recent year, 41% of these babies were lost to follow-up.
Most people do not know their sickle cell trait status. 76% of parents who have a child with sickle cell disease do not know it can be prevented.
Medicare/medicaid will pay for the lifetime treatment of someone with SCD. This can run into the tens of millions. Medicare/medicaid will pay for the “cures”. This can cost 1-3 million per patient. The “cost” for the “cures” include infertility.
To prevent sickle cell disease with infertility techniques (in-vitro fertilization with preimplantation genetic testing costs about $25,000. A blood test to detect a hereditary disease costs about $120 at the local hospital. Medicaid/medicare will not pay to prevent or to test.