The New York State Department of Health is highlighting National Sickle Cell Awareness Month this September, focusing on the need for early screening and encouraging blood donation to support those affected by the disease.
“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. Abnormal hemoglobin leads these cells to become sickle-shaped and cluster together, blocking blood flow. This can cause anemia, pain episodes, infections, and other severe health problems. Treatments are available; among them are two curative options: stem cell transplantation and gene therapy. The first FDA-approved gene therapy using CRISPR/Cas9 technology represents a significant advancement.
In the United States, more than 100,000 people have sickle cell disease. Globally, about 20 million people are affected. While most U.S. cases occur among Black individuals, it also affects people of Hispanic, Southern European, Middle Eastern or Asian Indian backgrounds.
New York’s Newborn Screening Program tests all babies born in the state for sickle cell disease along with over 50 mostly genetic conditions. The program aims to ensure children with these disorders receive early intervention so they can lead healthier lives. In 1975, New York became the first state in the country to implement newborn screening for sickle cell disease.
Laboratory tests conducted shortly after birth help identify babies at risk for treatable diseases; prompt diagnosis allows timely medical care that can improve outcomes and reduce risk of severe illness or death.
The Department encourages residents to consider donating blood since transfusions play an important role in managing complications from sickle cell disease.
Information about the New York State Newborn Screening Program is available at https://www.wadsworth.org/programs/newborn/screening/. Details on living with sickle cell disease can be found at https://www.cdc.gov/ncbddd/sicklecell/index.html/. Blood donation locations in New York can be accessed at https://www.health.ny.gov/professionals/patients/donation/organ/.
