In America, one in every 365 Black or African-American babies are born afflicted with sickle cell disease, resulting in approximately 100,000 people in the United States currently living with the inherited red blood cell disorder. Patients experience bouts of intensely painful crises or strokes throughout their lives. They also face a drastically reduced life expectancy and a health care system that often stigmatizes adult sufferers as painkiller addicts.

Christopher Lewis is an MD-PhD student at Emory who’s in the midst of his research phase trying to understand how stem cell therapy works. His lab studies stem cells for Crohn’s and other inflammatory diseases, including research on sickle cell transplants and how they can make therapies more effective.

In the course of his studies, he met Marika Wieliczko, a PhD student in chemistry whose passion lies in science outreach and advocacy. She’s also vice-president of an Emory organization called SciComm that works to make science research more available to the public. To that end, they have an online magazine and a podcast geared towards spreading their message in a way that’s engaging and spurs people to get involved. Lewis spoke with Wieliczko about sickle cell research, and how, despite how widespread the disease is, there is a feeling among patients that it’s not well understood among the general population. “It’s more common than, say, cystic fibrosis or hemophilia,” Lewis explains, “and yet there is more funding and greater public awareness for those diseases. Similarly, patients themselves aren’t always aware of the options available to them such as bone marrow transplants.”

Traditionally, treatment for sickle cell has been reduced to medication, red cell transfusions, IV fluids, or antibiotics, but the transplant modality, which has been around for a couple decades now, remains unknown to many people with the disease despite achieving cure rates up to 80%. When Lewis started doing the research into sickle cell, he found that for a variety of complex sociological reasons, African-Americans donate blood and red blood cells at lower rates. They also less apt to volunteer to be stem cell or bone marrow donors.

Sickle and Flow

Lewis and Wieliczko began thinking about ways to translate the type of science that PhD chemists and biologists are working on in the lab to patient communities and the population at large. To them, it seemed like there was a public health translation gap. “We’ve got the science, we’ve got great biologists and stem cell people working on these things,” he argues. “But in terms of actually deploying bone marrow transplant and stem cell therapy to people, the thing that we really need to help with is we need people to donate blood, we need people to donate stem cells.”

Working together with the team at SciComm, Lewis and Wieliczko began to reach out to different artists and musicians to discuss the different ways they could leverage Atlanta. The thought was that in order to better connect the scientific and medical communities with the public, they needed to tap into the culture that drives the city forward. “The nightlife, the music, the history of this place is so incredible,” says Lewis. “There are a lot of young people and a high proportion of African-Americans. We got to thinking: what if we could combine that youth culture, that music and arts vibe that is so strong in Atlanta, and try to partner with these organizations together and celebrate the lives of people affected by sickle cell?”

Sickle and Flow ATL started as a loose affiliation between scientists, health care workers, musicians, and artists. They are in the process of becoming a 501(c) nonprofit because they feel very strongly that in order to increase awareness about sickle cell, promote healthcare equality, and to overcome the biases and misperceptions that affect patients and treatments alike, they need to have a strong organizational structure and long-term strategies in place. One of these strategies is hosting fundraising events that bring together a wide cross-section of people and organizations in the spirit of positive social change. The first of these events will take place this Saturday night at the Sound Table, as part of World Blood Day.

Billed as a benefit hip-hop concert, Sickle & Flow features an impressive list of local R&B and hip-hop performers, including emerging talents COMMAND, Bassmint Fresh, BAMN, and Eri Soul, as well as outdoor art exhibits and local food from the Atlanta area. In addition, Sickle & Flow partners Be the Match, an organization that manages the largest and most diverse marrow registry in the world, will be there to help people learn how they can become donors. The goal is to empower people to learn how they can help be the cure. For some that means donating blood or stem cells, for others it means contributing financially or leveraging their talents and influence to educate people about the disease. All proceeds from the concert will go to support the Sickle Cell Foundation of Georgia.

In order to add a human element, patients at the event will tell their stories in order to help expose and address some of the social stigmas associated with the disease. Although pediatric patients generally receive the pain medication they need, when they transition to adult care they are often regarded as ‘frequent fliers,’ malingerers, or drug-seeking addicts. The aim is to create a platform for real sickle cell patients, facing real pain, to share their personal experiences alongside scientists who will speak to why they study sickle cell. “We wanted to bring all sectors together at Sickle and Flow because innovation in public health and translation of science into medical practice can’t just be something that happens in a white coat lab,” Lewis explains. “It needs to involve real people and the community we’re trying to serve.”

Sickle & Flow ATL will take place on Saturday, June 18 at the Sound Table. Featured performers include COMMAND, Bassmint Fresh, Eri Soul, Arielle Symone, BAMN, Ziggy2Playa, DJ ZuluWāv, and DJ Anomina. The event will be hosted by Suli Chillis. Doors open at 7 p.m. Admission is $7 in advance and $10 DOS.

More Info
Web: sickleandflow.org
Facebook: @sickleandflow
Instagram: @sickleandflow
Twitter: @sickleandflow