If your child screens positive for the sickle cell trait, they will be referred to a branch of the Sickle Cell Disease Association of America (SCDAA). At these sites, the families are not taught about prevention using in-vitro fertilization and preimplantation genetic testing (IVF-PGT).
However, if your child screens positive for the Cystic Fibrosis trait, they will be referred to the university hospital where the family is taught how to prevent passing down the disease to the next generation with IVF-PGT.
In this day and age of trying to diminish racial health disparities, one might think that the health care system would want to educate at risk families about prevention. Part of the problem is that there is little money to be made in prevention. Hospitals get a majority of their income from medicare and medicaid but medicare and medicaid will not pay to prevent sickle cell disease. They will, however, pay to treat and to “cure”.
Another issue may have to do with the health care system making certain assumptions about black people who are the majority of patients who get sickle cell disease. Some assume black Americans will not have health insurance or money to pay for prevention. They assume black American do not plan their pregnancies and do not know or care about the sickle cell trait status of their partner. I maintain that people have a right to know all of their options. I also feel that when people know that there are options that can impact the quality of their lives, they will consider and maybe take advantage of certain choices. Especially now that there has been a choice of “medical” prevention for 30 years. Prior to that, I think many people with the trait had a fatalistic outlook because the other options were not optimal.