Improving the Lives of People with Sickle Cell Disease

Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. According to the Centers for Disease Control and Prevention (CDC), SCD can lead to strokes, organ damage, joint and bone problems and other severe health consequences. The complications of SCD may begin around five or six months of age and continue over a person's lifetime.

Over the past 30 years, treatments for SCD and its complications have improved average life expectancy, but these treatments can be costly and invasive. Additionally, healthcare needs and access to care may change over the course of a patient's life.

To provide the latest public health update on what we know about SCD, and how far we have come with understanding this disease, CDC hosted a Public Health Grand Rounds session last week. Mary Hulihan, Dr.P.H., a CDC health scientist who works on a CDC Foundation effort with CDC called the Sickle Cell Data Collection program, presented during this session. In her presentation, Dr. Hulihan said that experts estimate that this disease affects approximately 100,000 people in the U.S. alone. However, she emphasized that there are no national registries to track this information and the exact number is unknown. This is where the SCDC program provides real impact.

The Sickle Cell Data Collection program collects health information about people with SCD to study long-term trends in diagnosis, treatment and healthcare access for people with SCD in the U.S. The program will help inform policy and healthcare standards that improve and extend the lives of people with SCD. For this effort, the CDC Foundation is partnering with CDC’s Division of Blood Disorders, the California Rare Disease Surveillance Program, the Georgia Health Policy Center, Pfizer Inc., Biogen and Global Blood Therapeutics.

It was exciting to hear about the potential of our Sickle Cell Data Collection program to improve the lives of people living with SCD. You can view Dr. Hulihan’s full presentation on CDC’s website.

It’s important to note how far we have come with understanding SCD in just a few decades and how many challenges still remain. Through partnerships like the Sickle Cell Data Collection program, we can identify critical gaps and better understand how to improve the lives of people with SCD.