Since February of this year, I have been trying to educate people about the “medical” option of preventing Sickle Cell Disease. I have sent out maybe more than 200 emails to many people including President Joseph Biden and Vice-President Kamala Harris. I sent emails or letters to congress people, Sickle Cell Non-Profits, Black Lives Matter and a host of other individuals and institutions. Mostly my entreaties seem to have fallen on deaf ears.
Sickle Cell Disease has the misfortune of being at the intersection of sex, race, racism, money, embryo formation, guilt, denial, embarrassment and stigma. Many people are embarrassed if they or their children have sickle cell disease. Parents likely feel guilt if their child is born with SCD. Some people, including health professionals for their own personal or religious reasons, do not want to educate people about prevention when it includes embryo formation.
People have been dealing with SCD the same way for decades. They say don’t date someone who also has the trait. They lobby congress to pay for more research to treat and “cure” the disease. They lobbied for testing at birth even though most people seem not to know their results 20 years down the line when they are having children.
When dealing with the misconception that black Americans don’t care about prevention, I feel people need the information and a reason to care. I believe that pediatricians should be at the forefront of educating their patients. Pediatricians are the first to know that a child has the trait. If they begin talking to the families day on, people can plan ahead. If the patient, when only enough to understand, is reminded of their status as they approach child-bearing ages this will be a part of their life plan. To me it is similar to talking about sex with a child. The “talk” in at risk families should include discussions about sickle cell trait status.