This Sickle Cell Awareness Month, We’re Working To Address Representation Gaps In Health Research

Sickle Cell Disease (SCD) is a common blood disorder that can be passed down through generations. While this disease affects 100,000 Americans, it disproportionately impacts the African American community: about 1 in 13 Black or African American kids are born with the sickle cell trait. 

Many patients diagnosed with this lifelong disease suffer from serious complications and are in need of routinecomprehensive care. The financial cost of SCD is high, both to the people with the disease and to the healthcare system. Costs for hospital stays due to complications of SCD were estimated to be $488 million in 2004. 

Compared to other hereditary diseases, SCD research is underfunded, meaning there is still a gap in researchers’ knowledge about SCD as people age. Having an incomplete picture of SCD impacts racial health disparities of the disease. This Sickle Cell Awareness Month, we’re taking action to address inequities like this.

To help researchers better understand diseases like SCD, we’ve partnered with the All of Us Research Program. This effort aims to enroll one million or more people living in the United States in one of the most diverse health information resources in history to accelerate research that may improve health outcomes for underrepresented populations. The program is working to advance “precision medicine,” which will allow health care providers to tailor treatment and prevention strategies to individuals, rather than large groups. The only way to do that, though, is to provide researchers with health information that reflects the diversity of our country.

By becoming a participant, you could help researchers better understand the long-term impacts of hereditary diseases, like Sickle Cell Disease, and how it affects the Black and African American community. When all of us are represented in clinical trials, researchers could discover treatments that work best for you and your loved ones. You can learn more about the program and how to join here.