Campaign aims to improve sickle cell patients’ lives through music
NYU scientists, Nigerian-born musical artist team for BEAT-SCD collaboration
Scientists at New York University (NYU) are teaming up with Nigerian-born music artist Adekunle Gold on a project to improve the lives of people affected by sickle cell disease (SCD).
The collaboration was announced at an event held earlier this month as part of National Sickle Cell Awareness Month, according to a news story from NYU.
“Sickle cell is tough, but if you let it stop you, it owns you,” Gold said during the event. “Sickle cell should never stop you — learn to manage your health, but don’t stop. My head is still filled with my dreams.”
Campaign survey to explore attitudes about sickle cell, music
SCD is a genetic disorder characterized by the presence of deformed red blood cells that are prone to getting stuck inside blood vessels, interrupting normal blood flow. It can affect anyone, but it’s most common among people of African, Mediterranean, Middle Eastern, and Indian descent, with the majority of patients living in sub-Saharan Africa.
SCD can cause painful symptoms and serious health complications, but the medical aspects of the disease are only a part of how it affects patients. People with SCD often face stigma and misunderstanding, even from healthcare providers. For example, SCD patients trying to manage the very real pain caused by the disease are often unfairly labeled as seeking out addictive pain medications.
The new collaboration — Building Engagement Through Music Artistry and Storytelling for Sickle Cell Disease, or BEAT-SCD — will begin with a worldwide survey to explore attitudes about SCD and music. The survey will also gather information about how SCD affects people living with it. Survey results will be used to create an intervention that will use music to help educate the public about SCD.
Bringing a human dimension to conversations about sickle cell disease reminds us why elevating lived experiences is essential to advancing policy, advocacy, and research. In the case of Adekunle Gold, sickle cell disease can be a story of strength, creativity, and hope.
The project aims to leverage the social capital of well-known artists like Gold, who has been open about his life with SCD since referencing the disease in his 2022 song “5 stars.”
“Adekunle Gold is a powerful storyteller who is using his platform to bring much-needed attention to the experience of those living with sickle cell disease. His music doesn’t just sound good — it says something. His message is clear: ‘[Your] condition does not define your potential,’” said Carlos Chirinos-Espin, PhD, an assistant professor in the Music Business Program at NYU Steinhardt.
Chirinos-Espin leads the project alongside the Adekunle Gold Foundation and Emmanuel Peprah, PhD, an associate professor of global and environmental health at the NYU School of Global Public Health.
“Bringing a human dimension to conversations about sickle cell disease reminds us why elevating lived experiences is essential to advancing policy, advocacy, and research. In the case of Adekunle Gold, sickle cell disease can be a story of strength, creativity, and hope,” Peprah said.
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