Sickle Cell Disease
Sickle cell disease is an inherited red blood cell disorder and affects an estimated 70,000-100,000 people in the United States. Sickle cell disease is the most common genetic condition identified through universal newborn screening in all 50 states, the District of Columbia, Puerto Rico, and the US Virgin Islands. In the US, approximately two million people have sickle cell trait. Worldwide, millions more are affected with sickle cell disease and other hemoglobin disorders. Medical advances have extended life expectancy from 14 years in the mid-1970s to over 40 years in the mid-1990s. However, people with sickle cell disease continue to suffer serious morbidities from frequent pain episodes, infections, acute chest syndrome and stroke. Persons living with this condition also experience complications related to chronic organ damage, psychosocial issues and on occasion early death.
Provision of care and associated health outcomes for individuals living with sickle cell disease vary widely. To stay healthy, individuals with sickle cell disease need regular access to primary and specialty care, ideally at sites that incorporate current screening tests, disease modifying treatments and the latest medical technology. Unfortunately, many do not have access to this level of care for a myriad of reasons.
Working to Improve Sickle Cell Healthcare (WISCH), NICHQ’s portfolio of quality improvement programs focused on sickle cell disease, includes two projects both of which are funded by the US Department of Health and Human Services/Health Resources and Services Administration.
Sickle Cell Disease Treatment Demonstration Program
This program seeks to improve access and the coordination of care and services for individuals with sickle cell disease. An additional goal of the program is to improve and expand patient and provider education regarding sickle cell disease and sickle cell trait. NICHQ has formed a unique consortium to serve as the National Coordinating Center for this program in partnership with the Sickle Cell Disease Association of America and the Boston Medical Center.
Sickle Cell Disease Newborn Screening Program
Also working in concert with the Sickle Cell Disease Association of America and Boston Medical Center, this program seeks to improve the follow-up care of individuals identified through newborn screening and other screening approaches with sickle cell disease, sickle cell trait, and other hemoglobin disorders across the lifespan.
Resources
- Hear about sickle cell disease through patients’ experience and voices in interviews compiled by the New York Times.
- Learn more about the US Department of Health and Human Services Sickle Cell Disease Initiative. See fact sheet.
- Learn more about the disease from:
