September 10, 2012

NICHQ Recognizes Sickle Cell Awareness Month in September

On the "WISCH List": Improving care for people living with sickle cell disease

September is Sickle Cell Awareness Month, an important opportunity to draw attention to a disorder that affects as many as 100,000 people in the U.S. and one out of every 500 African American babies. To mark the occasion, the National Initiative for Children’s Healthcare Quality (NICHQ) and its partner organizations are raising awareness of the important improvements being made through the Working to Improve Sickle Cell Healthcare (WISCH) project.

WISCH is helping address obstacles in sickle cell treatment through two federally-funded programs that focus on improving treatment for individuals living with sickle cell disease and the follow up from newborn screening for the condition. Fifteen teams around the country are using quality improvement techniques to improve the coordination of care, newborn screening, treatment of the disease, transition from pediatric to adult care, and the education of healthcare providers and the public about sickle cell disease. Their work is being guided by NICHQ, which is the coordinating center for the two sickle cell projects that comprise WISCH.

“I am proud of the progress that the WISCH project has made to improve the quality of care for individuals with sickle cell disease across the lifespan," said Charles Homer, MD, MPH, NICHQ’s president and CEO. "This disease is a major public health issue that does not receive enough attention. We are pleased to have these teams on board to help us build awareness and find solutions.”

SCD is an inherited red blood cell disorder that is characterized by chronic anemia, unpredictable episodes of pain and end-organ damage that begin in early childhood and lead to altered functioning, poor health-related quality of life, increased health care use, and early mortality. Individuals with sickle cell experience painful episodes when their red blood cells become misshapen and block their small blood vessels.

NICHQ encourages individuals and families to support sickle cell disease events sponsored in their communities during this month.