The New York State (NYS) Newborn Screening Program (NBSP) became the first state in the nation to screen for sickle cell disease in 1975. Sickle cell disease is an inherited blood disorder, known also as hemoglobinopathy, that affects the shape and function of red blood cells in the body. It can cause anemia, painful episodes, infections, stroke/blood clots, and organ damage. If left untreated, this condition can cause significant illness and early death. Fortunately, with early diagnosis and treatment, health outcomes can be significantly improved.
This year marks the 50th anniversary of screening all newborns in NYS for sickle cell disease. By screening before a baby is symptomatic, the NBSP has the opportunity to help families connect with specialists for counseling, additional testing, and treatment. Early diagnosis and treatment can help keep a child as healthy as possible. Life expectancy for people with sickle cell disease is almost four times longer today than it was 50 years ago.
The NBSP has been celebrating this anniversary, and more importantly, celebrating the people in NYS who are living with sickle cell disease. This condition disproportionately affects individuals with Black or African ancestry, occurring in approximately one in every 365 Black or African American births in the United States. This condition is also more common in those with Hispanic, Southern European, Middle Eastern or Asian Indian backgrounds.
On June 19th, the NYS Department of Health kicked off the celebration and recognized World Sickle Cell Day.
Recently, NBSP staff listened to and showed support for local communities at the Albany Black Arts & Cultural Festival: Grand Rising Health & Wellness Fair.
The NBSP looks forward to continuing to spread awareness about sickle cell disease, especially with National Sickle Cell Awareness Month right around the corner in September. Stay tuned for updates on the NBSP’s celebration of this occasion!