As of Friday, Juneteenth is a national holiday celebrating the emancipation of African Americans. It also coincides with World Sickle Cell Awareness Day. The disease, which is more common in people of African descent, affects between 2,500 and 4,500 African Americans in Virginia.
But only recently have patients been able to access the care and support they need to manage pain and live healthy, productive lives. It’s one of many racial inequalities in healthcare. Virginia Commonwealth University’s Adult Sickle Cell Program is trying to make up for that imbalance.
“We have the equivalent of an orphanage,” said program director Dr. Wally Smith. “The biggest problem is finding new orphans that don’t want to be found”
When they are young, Smith said patients with sickle cell anemia are treated alongside pediatric cancer patients. But they tend to get lost in the transition to adulthood.
“We try to capture those patients, hold their hands, help them to walk across the bridge over the alligators in the water beneath and get safely on the other side in the adult system of care,” Smith said.
Smith said patients often lose their insurance and stop taking their medications. Maintaining a job and affording housing are also difficult.
The program, which serves about 600 patients from all over the state, includes two physicians, nurse practitioners, a social worker and other staff all focused on this one disease. Not-for-profit Virginia Supportive Housing has also partnered with VCU to offer patients housing.
Smith said it may be the only program of its kind in the country.
For a long time, patients were tossed aside when they arrived at an emergency room asking for opioids because they were experiencing extreme pain.
“Emergency room doctors and everybody would say how do we know you’re hurting,” Smith said. “And there is no blood test to show that someone is hurting.”
With sickle cell, round, red blood cells are stretched to a narrow, crescent shape and block the passage of normal blood cells so they can’t carry oxygen to tissues and organs which causes extreme pain.
Smith said for a long time, there were few treatments for sickle cell patients.
The first medication to treat sickle cell anemia, a chemotherapy drug, wasn’t approved until 1994. It was 2017 before more treatments became available. Scientists are now experimenting with Gene therapy.
“So, it’s an exciting time, treatment-wise,” Smith said. “But for a long time, we were dwelling in anonymity and the specialty was not seen as attractive.”
It’s a lot of work for Kenny Lane, one of the program’s patients, to keep the blood flowing in his veins.
Lane gave his cells some direction during a recent interview: “Okay cells, I know that you’re stacking up, but y’all need to go ahead and get in a straight line. Line up and go on through!”
Lane spoke to us at Monroe Park, where he often walks from his apartment. With the help of VCU’s sickle cell program, he was able to get housing– the first time he’s ever lived alone.
Lane, 34, has always struggled to be independent. He lived with his mother until he was 25. When he finally moved out, he lived with two separate girlfriends who stole his money and medication. Living alone, with the help of the support system at VCU, has reduced his stress and kept him out of the ER.
It’s also let him focus on his music, which has been a big motivator for him.
“Sometimes if I’m in the house, I just get on my guitar, put on YouTube, play Christian music and just sit there and practice on my guitar,” Lane said. “Or either like I said, I’ll come out here, enjoy the weather outside or walk back and forth down Broad Street.”
It’s taken a long time to get this far, Dr. Smith said, because of a lack of funding and research.
“These are patients with no social power,” Smith said. “Health disparities already exist for African Americans in the United States. They were in a group where the type of research that needed to be done needed to be funded largely by the government because industry did not see it as lucrative.”
Today, rare disease research has become more attractive to the pharmaceutical industry. Curing sickle cell disease is also now viewed as a racial justice issue.
“Wealth begets health in the United States and race is a social construct, not a biological construct,” Smith said. “So, race determines health in the United States because it is socially determined.”
Smith says life is getting better for his patients, especially for Lane, who he says is getting more ambitious with time.
