NYU researchers partnered with Nigerian singer Adekunle Gold to launch an organization that uses music to reduce stigma and raise awareness around sickle cell disease, as a part of the university’s Arts & Impact Initiative launched last month. 

The project, titled “Building Engagement Through Music Artistry and Storytelling for Sickle Cell Disease” — or BEAT-SCD — was launched by Steinhardt professor Carlos Chirinos and Global Public Health professor Emmanuel Peprah in collaboration with the Adekunle Gold Foundation. The BEAT-SCD project, supported by an NYU Research Catalyst Grant, aims to research how songs about sickle cell disease — a genetic blood disorder that affects 8 million people worldwide, with 80% of global cases being in sub-Saharan Africa — could destigmatize the issue.

“We want to use the songs as vehicles to communicate,” Chirirnos told WSN. “For people who don’t know how to read, a song might be a more effective method of communication — because songs use storytelling and narrative, they tend to be more appealing to listen to.”

The Afrobeats artist, who suffers from sickle cell disease himself, started his foundation to raise global awareness and distribute resources to sickle cell charities across Nigeria and other affected countries. As a part of his advocacy, Gold also released a song in 2022 called “5 Star,” in which he recounts his experience as a survivor of the disease.

Stigma surrounding sickle cell disease is often attributed to medical racism and how the condition disproportionately affects Black people. Because the standard of care for SCD patients is often opioids, patients can face bias from healthcare providers who accuse them of being “drug seekers.”

Peprah told WSN the organization hopes to “begin unpacking knowledge, attitudes and beliefs,” around the disease. She also said it strives to develop and adapt evidence-based interventions to address challenges faced by sickle cell patients. 

BEAT-SCD’s team is working on publishing surveys and systematic literature reviews that will help them expand their research, fundraise for their work and continue to grow their platform. 

“Narrative change is a precursor to social change,” Chirinos said. “In order to change society, you need to change the conversation about it, to increase acceptance and to increase normalization of the topic.”

Contact Ashlie West at [email protected].