Raytoyia Brooks knew she carried the sickle cell trait. Her daughter’s father thought he didn’t have it. But, when their baby Te’Avionna Rowe was born, she was diagnosed with sickle cell disease.
The blood disease affects about 100,000 Americans and 1 out of every 365 Black or African American births. Black folks are most affected by it. A child inherits sickle cell disease when both parents have the sickle cell trait or one or both parents have the disease.
Healthy red blood cells are flexible and move through even the smallest blood vessels, but in sickle cell disease, red blood cells become rigid and are shaped like the letter C. This causes the sickled cells to get stuck and block blood flow, which causes pain and infections.
Te’Avionna, 14, doesn’t know a life without the disease.
Her first year of life, she was in and out of the hospital, because her spleen was enlarged. As a baby, she had her first round of blood transfusions. At nine years old, she developed a blood infection.
Last year, she got a surgical port put in her chest. As a result, Te’Avionna went through a year of blood transfusions. Now, her most common symptoms are headaches, nausea, and pain. Since there is no treatment for SCD, the teen makes sure to take Tylenol and stay hydrated.
The Truth About Living With SCD
There are common misconceptions about SCD. Te’Avionna says some people think the blood disease is contagious — which leaves her frustrated.
“They think it’s something so horrible or like you’re gonna die from it,” she says. “I do have my moments where I wish I didn’t have it. But it’s also like I have to be grateful for what I have.”
Tamara New, director of the Sickle Cell Disease Program at the Johns Hopkins All Children’s Cancer & Blood Disorders Institute, says there’s more to the disease than people think. With 20 years in practice as a physician, most patients have anemia. Patients can experience complications in any organ throughout the body since blood flows to every organ.
The most common complaint is pain. And because doctors can’t measure your pain, it can be tricky to alleviate it. In a 2021 report of Black patients living with SCD, due to pain, more than 60% of the adults surveyed had to get a different job, their social life was affected, and participation in sports or hobbies was restricted.
There are times when patients may overreport or underreport pain, so their pain may be mismanaged, New says. Depending on the severity of the pain, patients may have to go in and out of the hospital for pain episodes.
“Sometimes the medical system may mislabel my patients and may not treat them as well as they should be treated when they’re not feeling well,” New says.
The Cost of Care
The cost of caring for a child with any chronic illness is expensive. But, with sickle cell disease, because pain levels increase as children grow, medical bills tend to climb as well.
“It is very expensive to be in and out of the hospital,” Brooks says. “When you have a child with chronic illness, if you’re not rich, you most likely qualify for children’s medical services.”
At times, she wouldn’t get paid when she had to take Te’Avionna to the hospital. And while some people have told her to just go to work, as a mother, she doesn’t want to leave her by herself. Situations have happened where things changed quickly, and Brooks wouldn’t want to leave medical decisions up to the staff.
As Te’Avionna has gotten older, she’s been able to articulate and tell medical staff how she feels. Now, she often makes medical decisions for herself.
“Since I’ve been watching my mom make (decisions) for so long … it’s not hard but sometimes I gotta be on top of my stuff,” Te’Avionna says. “I know what can cause my pain, and I know how to explain my pain.”
Children between the ages of 13-18 experience the highest estimated medical costs and out-of-pocket costs for sickle cell disease. Averaging $37-40,000 for both males and females between those teen years.
“It’s very expensive to not go to work and still have bills to be paid,” Brooks says. But, Te’Avionna has been a patient at Johns Hopkins All Children Hospital since she was three months old. In the first few years, Brooks often reallocated money for food and diapers to pay for medical bills. As the bills stacked, hospital staff connected Brooks with financial resources.
Worries About Adulthood
While interviewing people for this story, a common theme emerged: The treatment of children with SCD is seemingly better than that of adults. Brooks agrees. She’s heard from adults living with SCD that they are not treated well. And she knows this first-hand. Brooks sees a hematologist for her sickle cell trait. She says the level of care she gets is not the same level that her daughter gets. At times, it has made her not want to visit the doctor.
As her daughter gets older, she worries about what will happen when Te’Avionna transitions to adult hematology care.
“I just feel like they care more for the kids than adults,” she says. “I know it’s really hard for the kids. But I do feel like adult care should be important as well, for the longevity of life.”
Dr. New says this is a concern that she has heard throughout her career. Often, patients will connect with a pediatric team that validates their needs and pain levels. But she says, that when the patient transitions to adult care, it functions differently.
This results in Black patients not always being able to trust the first hematologist they meet. But New reminds people that patients were born with sickle cell disease. It’s not something that a parent does during pregnancy. It’s a disease that they can’t get rid of.
“They deserve the same respect and the same compassion as everybody else,” she says. “And sometimes that’s lacking.”