World Sickle Cell Day: Data to Action

Today is World Sickle Cell Day, which has been held annually since 2008 to help raise awareness of sickle cell disease (SCD). SCD is the most common inherited blood disorder in the United States, affecting an estimated 90,000 to 100,000 Americans. SCD can be extremely painful and is associated with a number of severe health complications.

In the past few decades, we have come a long way in better understanding SCD, however, there is much more to learn. For instance, until recently there had not been a longitudinal study of individuals with SCD so that health outcomes could be understood and improved for those suffering from the disease.

To begin to address this need, the CDC Foundation began a partnership with CDC’s Division of Blood Disorders, the California Rare Disease Surveillance Program and the Georgia Health Policy Center to support the development and operation of a longitudinal data collection system for Americans with sickle cell disease, called the Sickle Cell Data Collection (SCDC) program. To date, the program has received funding support from Pfizer Inc., Bioverativ and Global Blood Therapeutics. At this time, the program is focused on the states of California and Georgia, collecting health information about people with SCD to study long-term trends in diagnosis, treatment and healthcare access. As more resources become available, the program can potentially be expanded to include additional states.

There are incredibly important insights to be gained from collecting this type of data. For instance, data from the SCDC program helped determine that more than half of the adults living with SCD in California live in Los Angeles County, California, an area in need of more healthcare services and providers who are able and willing to treat patients with SCD. This information helped the Los Angeles County Department of Public Health make the decision to open a new clinic focused on SCD at the MLK Outpatient Center in September 2016. The clinic represents a real world example of data being translated into action to help improve lives.

Additionally, we are pleased to announce that this model of data to action in Los Angeles County was recently selected by the National Association of Counties (NACo) as one of their 100 Brilliant Ideas at Work. The 100 Brilliant Ideas illustrate the best innovations in county government.

As we commemorate World Sickle Cell Day, it’s appropriate to reflect on what has been accomplished and what is left to do. We thank all of our partners who are supporting the vital work of the Sickle Cell Data Collection program. We are proud of this work that is identifying critical gaps, increasing understanding of SCD and saving and improving the lives of those suffering from this challenging and painful disease.  

Make a gift to the CDC Foundation to help support this SCDC program.

Laura Angel is the vice president for advancement for the CDC Foundation.