New Sickle Cell Public Health Initiative

CDC Expert Commentary
New Sickle Cell Public Health Initiative
Althea Grant, PhD

Authors and Disclosures

Hello, my name is Dr. Althea Grant. I'm an epidemiologist with the Centers for Disease Control and Prevention (CDC). As part of the CDC Expert Video Commentary Series on Medscape, I'm here to speak with you about a new initiative designed to reduce mortality, morbidity, and disability due to sickle cell disease.

In the United States, sickle cell disease affects an estimated 90,000-100,000 Americans. The disease occurs in approximately 1 of every 500 black American births and in 1 of every 36,000 Hispanic American births.

In sickle cell disease, the red blood cells become hard and sticky and look like a C-shaped farm tool called a "sickle." The sickle cells die early, which causes a constant shortage of red blood cells. When the sickle-shaped cells travel through small blood vessels, they get stuck and clog the blood flow. This can cause chronic pain, acute chest syndrome, stroke, and infection among other serious complications. Although symptoms and complications of sickle cell disease can differ for each person and can range from mild to severe, the health problems associated with the disease can be life-threatening. However, fewer than 10% of Americans with sickle cell disease have access to treatment centers that specialize in the management of this disorder and there is a lack of uniform information available about those living with the disease. Thus, there is still much that needs to be done to improve the overall health of persons who have sickle cell disease.

In response the CDC, National Institutes of Health (NIH), and 7 pilot states -- California, Florida, Georgia, New York, North Carolina, Michigan, and Pennsylvania -- are coordinating the Registry and Surveillance System for Hemoglobinopathies (called RuSH). RuSH is a surveillance system designed to collect information on sickle cell disease as well as another red blood cell disorder called thalassemia and their complications. Establishing a surveillance system for hemoglobinopathies is the first step to having a better understanding of how many people are affected by this disorder and their specific healthcare needs.

You can help make this project a success by supporting your state health departments in their data collection efforts when requested and by informing your patients about the surveillance program. The data collected from the RuSH program will be used to:

•Evaluate sickle cell disease and thalassemia treatment services;
•Develop new interventions and approaches to prevent health complications related to sickle cell disease and thalassemia;
•Allocate resources for sickle cell disease and thalassemia research and treatment programs; and
•Calculate a national prevalence estimate for sickle cell disease and thalassemia.

I appreciate how busy you are as a healthcare provider, and fully realize that asking for your participation in this endeavor adds to an already hectic schedule. However, supporting data collection efforts and informing patients with sickle cell disease and thalassemia about the RuSH program will not only help us to better understand these conditions, it will also help us in our prevention efforts in the future. For more information about CDC's hemoglobinopathies surveillance initiative, RuSH, please see the link on this page. Thank you for your time and consideration. We are grateful for your collaboration in this effort.

VIDEO: open here please >>
New Sickle Cell Public Health Initiative

CDC Expert Commentary:
CDC Expert Commentary