Hundreds of children flock to Stokesdale, North Carolina every summer to attend “Camp Carefree.” It’s for young people – age 6 to 16 – living with a chronic illness. There is fun, but also major health updates during the week children with sickle cell disease are at Camp Carefree.
Once you make your way to Carefree Lane, you begin to see the wide open space, some animals, a swimming pool and cabins. It’s the perfect playground for any child and for a sick child learning to be independent.
“Alright, so tell me your name," said Arkia Armstrong, a nurse from Novant Health. "Nice to meet you Hunter! Are you excited about camp? Cool!"
Hunter Hall is a soft-spoken 11-year-old. That could be because he’s going through the worst part of camp – the health check-in, with nurses like Armstrong.
"Do you have to get any blood transfusions or anything?" asked Armstrong.
When questions have to be answered about blood transfusions, hospitalizations, medications, mom steps in. Mary Hall of Charlotte says her son Hunter has been very healthy despite his sickle cell.
“He’s a football player, does any and everything that a healthy child would do," said Mary Hall. "You would never know he has this chronic illness.”
This chronic illness, known as sickle cell, is an inherited disease. Mary Hall and her husband Clifton Hall have sickle cell trait, along with as many as two million other people across the country. But in the United States, about 100,000 people are believed to be living with the disease, and most are African Americans, like Hunter. He likes camp for the fun and the education.
"How they talk to you about how you have sickle cell and they teach you more about your sickle cell and how it works," said Hunter Hall.
The disorder causes red blood cells to be abnormally shaped like a “sickle.” That makes it hard for the cells to move oxygen throughout the body, causing much pain and even damage to organs.
One reason Hunter and about half of the 51 other kids are feeling well enough to attend camp is likely because they take a daily dose of the drug Hydroxyurea.
Monica Summers has two children with sickle cell and both are on Hydroxyurea.
“They are doing great," said Summers. "They both, they are on Hydroxyurea. They don’t have many sickle cell pain episodes and they actually have not been in the hospital in four years.”
Summers is the Program Director at Piedmont Health Services and Sickle Cell Agency in Greensboro. She is also the sickle cell camp director. Just weeks before the start of camp, the Food and Drug Administration approved a new Sickle Cell drug called Endari.
“That’s a really good step that they actually got past the trial step and has now been approved," said Summers.
Summers knows a lot about clinical trials. Her 14-year-old son CJ was a part of the Hydroxyurea trial for several years. But she understands why so many African Americans shun trials. Their mistrust of doctors and researchers runs deep, many still recalling the Tuskegee syphilis experiments going back to the 1930s.
It was hard to keep up with 12-year-old Alaina Martin at camp. She’s forged many lasting relationships over the years.
“Most of them I forgot their names, Mikala, Senonie, this girl I couldn’t pronounce her name so I call her A-A," joked Alaina Martin.
Alaina’s parents, James and Sheila Martin of High Point, say their daughter is managing her sickle cell well without taking any daily meds, not even Hydroxyurea. And they’re not sure they will try Endari either or allow their daughter to be a part of a clinical trial.
“No! That was our whole point at the beginning, to help her immune system develop on its own," said James Martin.
The American Society of Hematology says even though sickle cell patients are living longer, there are still major concerns about their quality of care and treatment options. The new sickle cell drug Endari is the first drug approved for sickle cell patients in almost 20 years.
