Sentara helps launch first adult sickle cell clinic in Hampton Roads

Khristina Reid has two daughters who were diagnosed with sickle cell disease at birth. As children, they received treatment at Children’s Hospital of the King’s Daughters, which offers pediatric care for people with the disease.

But as her daughters grew older, they faced the prospect of having to travel the roughly two hours from Virginia Beach, Va., to Richmond, Va., for specialized care. There was no sickle cell clinic for adults in Hampton Roads, although the region has one of the highest rates of people with sickle cell disease in Virginia.

“My daughters were nervous about leaving pediatric care and going into adult care,” said Reid. “They had heard many horror stories.”

Now they have a local option for adult care. This October, Sentara Health and Macon & Joan Brock Virginia Health Sciences at Old Dominion University joined forces to launch the Sentara-EVMS Comprehensive Sickle Cell Program.

The new clinic is on the campus of Sentara Norfolk General Hospital and Eastern Virginia Medical School in Norfolk, Va.

It brings specialists from general internal medicine, hospital medicine, pain management, and psychiatry under one roof to treat adults with sickle cell disease, which is one of the most common genetic disorders in the U.S.

In addition to focusing on the chronic clinical complications associated with sickle cell disease, this multidisciplinary center will prioritize pain management, rehabilitation care, and psychiatric and behavioral health services to address the full spectrum of patient needs.

Reid, who launched the Virginia Sickle Cell Network to support people with the disease, said community members are very excited about the new program.

“The need is great,” said Reid. “After learning that EVMS, ODU, and Sentara have put their heads and hearts together to start this program, we are ecstatic.”

A disease that disproportionately affects underserved populations

Sickle cell disease is an inherited blood disorder that results in misshapen red blood cells, leading to severe pain, organ damage, and other serious complications.

While it’s a lifelong illness, it may be managed through medicines, blood transfusions, blood and bone marrow transplants, and other treatments.

Michael Hooper, M.D., chief academic officer for Sentara Health, said the new sickle cell clinic “has been a priority for Sentara for some time.”

It's one of the first clinics to emerge from the new affiliation between Sentara Health and the recently launched Macon & Joan Brock Virginia Health Sciences at Old Dominion University.

“Historically, across the nation, there has not been an equitable investment in sickle cell care compared to many other diseases that affect majority populations,” said Dr. Hooper. “We saw that as a discrepancy we wanted to address locally.”

Sickle cell disease disproportionally impacts historically underserved populations. More than 90% of Americans with the disease are Black, and 3-9% are Hispanic.

One in 325 Black Virginians live with sickle cell disease.

Iris Lundy, Sentara’s vice president of health equity, diversity, and inclusion, said the new clinic reduces barriers to care for people with sickle cell disease.

“I think this clinic is going to be the thing that changes the lives of those who suffer with this disease in our community,” said Lundy. 

Comprehensive care

Madeeha Deo, M.D., medical director of the new clinic, said people with sickle cell disease in Hampton Roads previously faced limited care options.

If they needed to visit a specialized clinic, they had to drive two or so hours to the VCU Health Sickle Cell Program or even farther to the Duke Sickle Cell Center, though they might be in pain.

If they were unable to make the trip, they could end up in an emergency department.

The new comprehensive and multidisciplinary clinic is “much-needed,” said Dr. Deo.

“This is care that should be available everywhere,” said Dr. Deo.

According to conservative estimates, around 800 adults have sickle cell disease in Hampton Roads, according to Dr. Deo.

In addition to offering a range of medical services, the new clinic will have a social worker to help patients secure transportation, afford medications, and navigate other barriers. The clinic will partner with Children’s Hospital of the King’s Daughters to transition patients from pediatric care.

“We’re going to be able to provide really good care to these patients,” said Dr. Deo.

Serena Boney, a patient at the new Sentara-EVMS Comprehensive Sickle Cell Program, said she felt lost when she aged out of the program at Children’s Hospital of the King’s Daughters years ago.

“I was very excited to learn about the Sentara-EVMS Comprehensive Sickle Cell Program.”

“So many people like myself need this comprehensive treatment. Some have to go to Duke or Richmond to find these doctors in one place and I believe it will be very advantageous to have a one-stop-shop in their network.”

To learn more about the new clinic or make an appointment, see the clinic website.