Sickle Cell Awareness Month: Reflections from a Health Equity Internship


September is Sickle Cell Awareness Month, designated to raise awareness about sickle cell disease (SCD), the most common inherited blood disorder in the United States. Affecting an estimated 90,000 to 100,000 Americans, SCD is a lifelong illness that can cause debilitating pain, infection, stroke and organ damage, and in some cases is life threatening.

The Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection (SCDC) program collects information about people with SCD to help communities, healthcare providers, policy makers, researchers, and federal, state and local health agencies better understand who has SCD, what their healthcare needs are and what barriers they face. SCDC data have been critical to identify the tools and resources needed for both healthcare providers and individuals living with SCD to promote better health outcomes.

As a Master of Public Health Student at the University of North Carolina Gillings School of Global Public Health, I served as an intern with the CDC Foundation’s Sickle Cell Data Collection Program, funded through the CDC. I worked on projects exploring the intersections of equity and accessibility of health communications in the field of SCD, including developing outreach materials and health education for SCD.

Through my internship I helped develop materials that will be used to promote both the SCDC program and health equity and community-based educational efforts for those living with SCD. By conducting a literature review on health communication strategies for SCD populations, I became aware of barriers to effective communication for SCD populations. While the review highlighted the limited amount of research and resources developed for those living with SCD compared to other chronic and genetic disorders, it helped me understand key strategies to develop and distribute messages and materials that can positively impact health outcomes for those living with SCD. Other projects including creating a database on resources and programs for immigrant and refugee populations living with SCD also provided a deeper understanding of the many challenges people with SCD experience in their daily lives.

People with SCD are often marginalized because of preconceived notions about this chronic disease. These are a few examples of how those with SCD are disfranchised in the medical community but also show the gaps in understanding, awareness and promotion of resources encouraging healthy outcomes for those living with SCD. In observation of Sickle Cell Awareness Month, the CDC Foundation is sharing resources and tools to raise awareness of SCD and provide support to those living with the disease.

Launching this month, the Stories of Sickle Cell project aims to highlight the unique identities of those living with SCD through a collection of photos, short stories and personal video interviews with members of the SCD community. People with SCD are more than just their disease and are multi-dimensional people with real passions, struggles, desires, needs, successes and failures. This project shares the personal experience of those living with SCD, advocates, academics and caregivers of those with SCD. To promote the Stories of Sickle Cell project, view the promotional toolkit here.

The Steps to Better Health Toolkit also launched two new guidelines this past year. Created through a partnership between CDC and the American Society for Hematology, the guidelines provide those living with SCD practical steps to manage their health. The toolkit for guidelines two and three focuses on making blood transfusions safer for those living with SCD along with tips for managing acute and chronic pain. While there is still much more to learn about SCD, developing key partnerships and disseminating the resources currently available are vital to promoting the health of those living with SCD. During Sickle Cell Awareness Month, please help us spread the word about SCD by sharing these resources through newsletters, web and social media.

Deborah Shoola is a CDC Foundation Noninfectious Disease intern with the Sickle Cell data collection program.