The New York State Department of Health is marking National Sickle Cell Awareness Month in September by highlighting the ongoing challenges of sickle cell disease and the importance of early screening and blood donation.
“Sickle cell disease is a serious condition that continues to disproportionately impact the Black community, bringing physical, emotional, and financial challenges for individuals and their loved ones,” said State Health Commissioner Dr. James McDonald. “The Department of Health is committed to expanding awareness, strengthening newborn screening, advancing equitable access to quality care, and fostering a supportive network for everyone living with sickle cell disease.”
Sickle cell disease is an inherited disorder affecting hemoglobin in red blood cells. Genetic mutations cause abnormal hemoglobin that leads red blood cells to become sickle-shaped and cluster together. This can block blood flow, resulting in anemia, pain episodes, infections, and other complications. Treatment options include stem cell transplantation and gene therapy; recent advances include FDA-approved gene therapy using CRISPR/Cas9 technology.
More than 100,000 people in the United States have sickle cell disease, with global cases estimated at 20 million. In the U.S., it most commonly affects Black individuals but also occurs among people of Hispanic, Southern European, Middle Eastern or Asian Indian descent.
New York’s Newborn Screening Program screens all babies born in the state for sickle cell disease as well as 50 other primarily genetic conditions. The program aims to identify affected infants early so they can receive timely intervention and improved health outcomes. New York was the first state to introduce newborn screening for sickle cell disease in 1975.
Early diagnosis through newborn screening allows prompt treatment that can reduce illness or death among infants with these disorders.
The department encourages residents to learn about blood donation because transfusions are important for people with sickle cell disease.
Information about the New York State Newborn Screening Program is available at https://www.wadsworth.org/programs/newborn/screening.
Resources on living with sickle cell disease are provided at https://www.cdc.gov/ncbddd/sicklecell/index.html.
Blood donation locations across New York can be found at https://www.health.ny.gov/diseases/conditions/blood_donation/.
