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.
- Governor Hochul signed a New Proclamation designating June 19, 2025 as World Sickle Cell Disease Awareness Day in the State of New York.
- On August 2nd, NBSP staff listened to and showed support for local communities at the Albany Black Arts & Cultural Festival: Grand Rising Health & Wellness Fair.
- The NYS Department of Health recognizes September as National Sickle Cell Awareness Month.
- On Saturday, September 27, 12 buildings and landmarks across New York State were illuminated in red to celebrate National Sickle Cell Awareness month.
- On October 5th, the history of sickle cell disease screening in New York State was presented at the Association of Public Health Laboratories (APHL) Newborn Screening Symposium in Providence, Rhode Island
- A trio of posts about sickle cell disease and the 50th anniversary were posted to the Department of Health’s social media on Facebook, Instagram, and X.
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MUSIC- The Newborn Screening Program invites all New Yorkers to celebrate the 50th anniversary of newborn screening for sickle cell disease. Whether you’re 5 or 50, we want to hear what sickle cell disease and sickle cell trait mean to you and your family. We encourage original submissions that reflect on the historical journey of sickle cell disease, challenges and triumphs in our communities, and lived experiences. Creative works may be showcased on New York State Department of Health social media.
- Download and complete a submission form and email your creation to SickleCell50@health.ny.gov Submissions will be accepted until December 31, 2025.
- With this coloring sheet , even our youngest residents are encouraged to participate.
The NBSP looks forward to continuing to spread awareness about sickle cell disease.