Shining the Light on Sickle Cell Anemia for Six Years

June 19th is not only the day we celebrate Juneteenth, but this year will also be the 16th anniversary of World Sickle Cell Awareness Day. It is also the day that a collaboration of 46 nonprofit, community-based organizations and medical providers in the Northeast U.S. will shine the light on sickle cell disease by turning buildings, stadiums, museums, hospitals, and other landmarks across their cities red to support patients with SCD. The Baltimore Ravens Stadium and Johns Hopkins will be among them.

From Idea to a Movement

Zemoria Brandon, the Shine the Light on Sickle Cell Steering Committee chair and administrator/social worker with Sickle Cell Disease Associaton of America, Philadelphia/Delaware Valley Chapter, says that Shine the Light started as an idea. “We were in a meeting at our national convention, and Gloria Rochester, Founder, President, and CEO of the New York (formerly Queens) Sickle Cell Advocacy Network, said there were so many myths, misinformation, and miseducation about it and who it impacts, and shining the light was what we stood on,” Brandon explained. “It started as an initiative; then it became a campaign, and now it’s a movement.”  It has empowered faith-based organizations, even those with SCD, to ask how we can get involved.

“We have an organization, a nursing sorority, and one of the members is affiliated with a sickle cell program in Philadelphia, and every year, they come together and hold a memorial red balloon release in memory of those clients who have passed away,” Brandon says.

Other ideas Brandon has seen include walkathons, block parties, golf tournaments, and red lightbulbs on their porches. And that movement has expanded beyond the Northeast because of social media.

Last year, 29 states and 21 countries participated in Shine the Light.

Amplifying the Message

The power of Shine the Light is a collaborative effort. A driving force of it is SiNERGe CBO, which is a community-based organization, hospital, and advocacy program working together to support, raise awareness about, and treat SCD.

“When we talk about sickle cell disease, it’s not to point to the Northeast region; it’s to shine the light on it so they have the awareness that this a disease that matters and causes a lot of suffering,” says Dr. Rosalyn Stewart, a Professor at Johns Hopkins University School of Medicine.

Dr Stewart also thinks it’s essential to shine a light on the disparities in funding. Currently, 40,000 patients are living with cystic fibrosis in the United States, and there are 100,000 people with SCD disease. “Their funding is about $100,000 to $1. The federal budget for SCD is 8M. We would like that to go up. We need the public voice to get louder, ” she says.”We’ve gotten Congress and the federal government to recognize the power of CBOs in healthcare and serving people in need.”

Getting Patients Access is Critical

While everyone is talking about multimillion-dollar treatments, Dr. Stewart said the primary need right now is getting SCD patients who aren’t on any therapy started on a therapy would be beneficial now. However, centers where patients can access treatments are not always accessible. “If you think about CF centers, people will travel to them. However, the average socio-demographic of someone with sickle cell disease is different. They might not have the means to travel 100 miles to a center of excellence.” the professor explains. “And so, on the provider side, we’ve pivoted to get satellites and other providers out where patients are to help do some of this work, and then only bring them to the academic centers when we have to.”

In areas where patients have access to public transportation, they may be able to use it to see a provider if they have the means, but even that may be an issue. So, when we think about SCD, we must consider all the ways to provide access to treatment. The shortage of hematologists available to treat adult sickle cell patients is an issue, too. As is the lack of treatment facilities and the number of Sickle Cell Disease Centers of Excellence.

June 19th happens to be Zemoria Brandon’s birthday. She has worked with the Philadelphia/Delaware Valley Chapter for 42 years. Her husband, who succumbed to SCD in 1998, was one of its co-founders. She will spend the day stopping at all 12 locations in Philly, Painting the Town Red in his honor. 

For a complete list of the SiNERGe CBOs is here.