For some reason, many world class medical institutions say that because Sickle Cell Disease (SCD) is hereditary, it cannot be prevented. If you inherit the genes for SCD from both of your parents, it is true that you will have SCD. However, what I am talking about is preventing SCD in the next generation. Two people who both have the trait for SCD can have a child without SCD. First of all, prevention requires that at risk populations know their trait status. If you have the trait and you partner has the trait, there is a 25 percent chance in each pregnancy that your child will have SCD. So if you decide, as a couple, you don’t want to risk having a child with SCD, you need to visit a fertility doctor at these same world class institutions. If you read further on these websites, they will tell you that with the help of a fertility doctor, you can undergo in-vitro fertilization (IVF) where, in a lab, an egg is fertilized with a sperm. After a few cell divisions, the resulting embryo can be tested (preimplantation genetic testing- PGT) for SCD. An embryo without SCD is implanted in the uterus.
This procedure IVF-PGT costs about $20,000 for IVF and an additional $$5,000 for the testing. Some insurance companies will pay the $20,000 for the IVF. The testing part is usually out of pocket. Medicare and Medicaid will not pay any of the $25,000. They will not even pay for the blood test to see if you have the trait for SCD. Some institutions have money set aside to help couple afford IVF-PGT. Eventually I am hoping the government ( Medicare/medicaid) and insurance companies will pay for the entire procedure. After all it is cheaper to prevent ($25,000),than to treat ($10,000,000 over a lifetime with SCD) or to cure ($3,000,000) with gene editing. At risk families should lobby congress and governors to cover prevention.
For patients who have SCD, the same technique is used to have a child without sickle cell.
Note that IVF-PGT can be used for other hereditary disease such as Cystic Fibrosis, Huntingtons’s Disease, Tay-Sachs and many other diseases.