Did you know that sickle cell disease (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, 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.
A powerful story in the Los Angeles Times describes how the clinic is helping sickle cell patients in need. For example, as the Los Angeles Times reports, one of the first patients at the clinic, 28-year-old Lance Jones, finds himself in paralyzing pain several times a year, and can’t predict when it will happen or which part of his body it will hit. Thanks to the new clinic, for the first time Lance now has nearby access to a multi-disciplinary team of primary care providers who can provide him with behavioral and mental health services, pain management and alternative therapies like yoga, social work and community health workers to help him manage his condition—all in one location.
“We are constantly modifying our services to match the community’s needs,” noted Ellen Rothman, MD, chief medical officer of the Martin Luther King, Jr. Outpatient Clinic, in a National Institute for Children’s Health blog about the new clinic. There are very few places an adult with SCD can go where providers feel comfortable treating them. This will be a place they can come for consistent care by providers trained to understand the complexities of their disease.”
There are very few places an adult with SCD can go where providers feel comfortable treating them. This will be a place they can come for consistent care by providers trained to understand the complexities of their disease.
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.
Much has been accomplished, yet there is much more to do to extend the reach of this important program to others with SCD in communities across America. 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.