Progress for Sickle Cell Disease Research and Understanding

Living with sickle cell disease (SCD) can be challenging and unpredictable, but Courtney Stinnett believes that those living with SCD are some of the strongest people on earth, according to her story on the Centers for Disease Control and Prevention (CDC) website.

The type of SCD that Courtney has is called hemoglobin S/beta(+)-thalassemia (also called sickle beta-thalassemia or HbS beta-thalassemia). Although it is a milder type of SCD, she still has pain episodes and other health issues. When she has a pain crisis, it can occur at any moment. It’s unpredictable. When asked about her pain, Courtney said, “The only way I can describe a pain crisis is to compare it to a migraine headache, but it’s 10 times worse and located in the joints. I have gotten up in the morning feeling fine, driven to work, and could not get out of the car because of a pain crisis. The pain can be that sudden.” 

SCD is the most common inherited blood disorder in the United States, affecting an estimated 90,000 to 100,000 Americans. Present at birth, this disease is known best for the extreme amount of pain it causes and the many health complications associated with it as the disease progresses over time. Lifelong care and treatments are critical to both prevent and treat problems and complications that may occur throughout the patient’s lifetime. 

To build on our understanding of SCD and help people suffering from it, the CDC Foundation has partnered with CDC’s Division of Blood Disorders to support the Sickle Cell Data Collection (SCDC) program.

The program was created in partnership with Tracking California and the Georgia Health Policy Center to collect longitudinal data about people in the United States with SCD, ranging from how patients transition from pediatric to adult care to what healthcare services are available to patients with SCD, to identify and improve upon critical gaps in their healthcare process. Support for the program through the CDC Foundation has come from a broad landscape of donors including Pfizer Inc., Bioverativ, Global Blood Therapeutics and the Doris Duke Charitable Foundation. While this program is currently limited to only California and Georgia, we are hopeful that as more resources become available, the SCDC program will be able to expand to additional states. 

Recently, the U.S. Senate’s Health, Education, Labor and Pensions (HELP) Committee unanimously approved legislation S. 2465 (the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act of 2018) to address issues related to sickle cell disease. With a primary goal to better understand the pervasiveness and distribution of heritable blood disorders such as SCD, this legislation reauthorizes SCD prevention and treatment grants awarded by Health Resources and Services Administration (HRSA) and authorizes the federal government to award data collection grants to states, academic institutions and nonprofit organizations.

To thank the Senate committee for advancing this legislation and encourage the full passage of it, a letter was sent to the senate signed by 52 groups in support of the initiative. One point they emphasized in the letter was how important it is for research on SCD to continue. “Surveillance is critical to improving our ability to better serve and extend the lives of patients with SCD. SCD surveillance currently exists only in California and Georgia through a grant from the CDC Foundation. Maintaining this authorization specifically for SCD is crucial to allowing CDC to expand its efforts in this area.” While this progress is exciting, there are additional steps needed before this bill becomes law. 

We are pleased to see that efforts like the SCDC program have helped provide the support that is needed to advance legislation such as this bill. We hope our work with CDC, donors and partners will continue to further improve our understanding of sickle cell disease with the aim of helping people who struggle with this disease on a daily basis.

We thank all of our partners who support 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.  

You can help us advance this vital work by making a gift to the CDC Foundation to support the SCDC program.