Until this month, adults in Hampton Roads with sickle cell disease had few options for treatment.
They could put together a patchwork of local providers for their various medical needs, which can include organ dysfunction or failure, chronic pain and strokes.
Or they could travel to the closest comprehensive sickle cell care centers at Virginia Commonwealth University in Richmond or Duke University in Durham, N.C.
Now, sickle cell patients have the option to use the newSentara-Eastern Virginia Medical School Comprehensive Sickle Cell Program in Norfolk.
The Virginia Department of Health doesn’t have recent data of adults in the state with sickle cell, but estimated in 2016 that between 4,000-5,000 Virginians - mostly Black – have the genetic disease. About half of those lived in Hampton Roads, said Dr. Madeeha Deo, medical director of the new Sentara-EVMS center.
Sickle cell is an inherited genetic disease that is common in places around the world where malaria is still prevalent, like Africa, South America and the Middle East, Deo said.
Researchers hypothesize that the genetic trait that causes sickle cell also naturally protects people from malaria because the sickle-shaped blood cells don’t allow malaria to survive in the body.
At some point, Deo said, “the sickle cell trait had a beneficial effect,” but as generations of Africans were taken to America and modern medicine eliminated malaria here, sickle cell became problematic, not protective.
Sickle cell can be difficult for a primary care doctor to manage on their own, Deo said. Some doctors may only see a handful of patients with the disease in their entire career, and until recently, there weren’t many treatment options. There are three medications now available for sickle cell patients.
“We need to have specialized centers that know not just how to manage sickle cell disease, but how to also prevent complications,” Deo said. “It's important for me to make sure that patients who are facing this condition where it's chronic, it's debilitating, are getting not just adequate care, but excellent care – compassionate care.”
The new program will allow patients to access internal medicine doctors and specialists like cardiologists and hematologists. That eliminates the need to try to find a network of doctors around the region who can fulfill a patient’s needs and makes it easier for multiple providers to share important medical information.
The center will work closely with Children’s Hospital of The King’s Daughters, which has a pediatric sickle cell program and tries to care for patients as long as possible but can’t keep them forever, Deo said.
The new clinic will also help patients access mental health providers and find non-medical support when needed.
“We can target some of the mental health issues that come with living with a chronic disease like sickle cell – whether that's stress, anxiety, depression, trauma,” Deo said.
A social worker in the clinic can help patients find community resources to assist with challenges like transportation, housing and food insecurity.
The clinic is one of the first to emerge from this year’s merger of Old Dominion University and Eastern Virginia Medical School, which created the Macon & Joan Brock Virginia Health Sciences at ODU.
Sentara leaders said they’ve had a long-running interest in creating a sickle cell clinic.
“Historically, across the nation, there has not been an equitable investment in sickle cell care compared to many other diseases that affect majority populations,” Michael Hooper, chief academic officer for Sentara Health, said in a press release.
“We saw that as a discrepancy we wanted to address locally.”
