About one of every 365 African American births in the United States results in a baby with sickle cell disease (SCD).
Despite its prevalence, the medical community still has difficulty understanding the illness. Experts say most people lack essential awareness of the inherited blood disorder that affects approximately 100,000 people in the United States, and African Americans and Hispanic Americans are most commonly affected.
Beverley Francis-Gibson, president and CEO of the Maryland-based Sickle Cell Disease Association of America (SCDAA), knows the devastating effects of sickle cell disease, particularly end-organ damage. As a child, Francis-Gibson witnessed her cousin struggle with chronic anemia, the slow destruction of his vital organs, and constant pain.
As part of National Sickle Cell Awareness Month, Francis-Gibson served as host of the eighth annual Sickle Cell Disease Therapeutics Conference on Sept. 10 at the Westin Washington, D.C. City Center. Rep. Robin Kelly (D-Ill.) served as the keynote speaker.
The event was designed to provide the SCD community with an opportunity to gather and address critical issues facing patients. The latest developments in care access, research and treatment options were also discussed.
“We don’t have any new drugs on the market for sickle cell patients, but we anticipate that in the next decade or so, we’re going to have amazing options,” Francis-Gibson said. “I think it’s important that we all stay engaged.”
Remaining engaged is something SCDAA has always done. Francis-Gibson said National Sickle Cell Awareness Month isn’t the only time SCDAA and others in the community actively seek to make a difference for patients and caregivers.
“It’s not something that we focus on just in September. We have many events that happen throughout the year,” Francis-Gibson said. “And it is important for patients, individuals, caregivers and just the general community to be aware of what’s happening around the United States.”
The goal of SCDAA, which will hold its annual convention in Baltimore in October, is to raise awareness about sickle cell disease. The nonprofit aims to accomplish its mission through several venues, campaigns, conferences and workshops, Francis-Gibson said.
“We know that the information changes rapidly, and things are moving fast in terms of new therapies for sickle cell patients,” Francis-Gibson said. “And we want to make sure that we’re bringing everyone along at the same time so that no one is left behind, or they don’t have the information that they need to make an informed decision.”
The SCD community has historically been underserved, and many patients lack access to adequate resources and care. Against that backdrop, some of the subjects tackled at the conference included patient advocacy and educating caregivers about the need for pain medication for SCD patients.
“This conference is a unique opportunity to bring together the community,” Francis-Gibson said. “And so we have patients, we have caregivers. We have industry leaders, we have students who come together to learn and hear about new solutions and share information about new knowledge that has been gained.
“We also celebrate some of the successes of the previous year,” she said. “And so it was a great collaboration, if you will, everyone coming together just to learn and be in the same space one day.”
The conference also helped to provide caregivers with the message that they’re not alone.
“We encourage the caregivers to get help for themselves as needed, and to take breaks and respite as needed, but also to call on other friends and family to help support them,” Francis-Gibson said. “Their loved one living with sickle cell disease is a giant task. And we recognize that the burnout rate is pretty high. So we’re encouraging them to care, and to take care of themselves as well.”
Another vital message Francis-Gibson said she wanted to convey is that the disease isn’t contagious.
“It’s an inherited disorder,” Francis-Gibson said. “And if they don’t know if they have the sickle cell trait, they can easily be tested for that so that they know what their status is. Our goal is to help raise awareness. We’re fighting the good fight for them. We need them to join us.”
For more information, go to sicklecelldisease.org.