The road to Ariath in South Sudan cuts through seemingly endless scorched plains that bake and crack in the hot sun, and then turn to thick mud when it rains.
Inside a mud-walled home, 11-year-old Aher sits beside a clay pot filled with water: his family’s improvised refrigerator that holds his lifesaving insulin. Without it, his blood sugar levels spiral out of control, and his body convulses with seizures.
The diagnosis that changed everything
Aher’s parents are farmers, and have lived through countless nights of fear. When Aher was barely 2, he fell gravely ill, vomiting, losing weight, and losing consciousness. His parents went from one clinic to another, selling what little they had to pay the medical bills and transport costs, but his condition got worse.
Eventually, a desperate trip to Aweil State Hospital changed everything. There, the doctors diagnosed Aher with type 1 diabetes, an autoimmune condition requiring daily insulin to survive. Globally, around 20 million people live with type 1 diabetes, including 1.1 million children and young adults under 20.
In wealthy countries, diabetes can be managed at home with insulin pens and glucose monitors. But in poorer nations, it is a different story. Across Africa, only one in seven people who need insulin can get it. Without insulin, the body shuts down, leading to diabetic ketoacidosis (DKA), a medical emergency that can be deadly without hospital treatment.
Families travel for hours for treatment
In Aweil, Doctors Without Borders/Médecins Sans Frontières (MSF) supports the pediatric unit of the state hospital and treats around 30 children with DKA in its intensive care unit (ICU) every month. It is a dangerous complication: DKA is the leading cause of death second only to malnutrition. Families travel for hours, often by motorbike or on foot, to reach the only specialized diabetes clinic in the region. Some don’t make it in time.
At first, Aher received insulin through vials and syringes. “He hated them,” says Aher’s father, Lual. “The injections were painful, but it was the only way to keep him alive.” Earlier this year, Aher was enrolled in an MSF trial to determine whether using insulin pens and glucometers could make a difference to the children’s lives. The changes were immediate.
“Since he started using the pen, he has not gone back to the ICU,” Lual says. “He plays now. He smiles.” But transport still costs more than most families can afford, and hunger complicates his care. “We eat once or twice a day. The doctors say he needs a special diet, but how can we buy it?”
Just 55 miles away in Marial Baai, 12-year-old Ajou Mayuen battles the same disease but has no access to insulin pens. “When the medicine runs out and I cannot find transport to Aweil, he gets worse,” says his mother, Rebecca. “Sometimes I think he survives only by God’s mercy.”
Rebecca gathers firewood to sell so she can buy flour to feed her son. However, during the rainy season, the forest floods, cutting her off from both income and the hospital. A single trip costs about 40,000 South Sudanese pounds [$66], more than she can pay. “If you had not come today, we would not have been able to go to the hospital”, she told a visiting MSF outreach team. “But I desperately want my son to get treatment.”
Ajou’s arms bear the marks of countless injections. He grows weary of the pain, sometimes refusing the shots. “He wants to give up,” Rebecca says quietly. “But I keep reminding him that the medicine is his only life source.”
Access to insulin pens can change lives
In 2021, the World Health Organization launched the Global Diabetes Compact, pledging that by 2030 everyone with type 1 diabetes should have access to affordable insulin and glucose self-monitoring. With only five years left, that goal still feels far away in places like Aweil where the cycle between home and the ICU is endless for many children.
However, the early results of the trial MSF is conducting show that access to insulin pens is changing lives. Lual, Aher’s father, knows that better than anyone. Every month, he worries the pen might break, or that one day they will not get another. “I do not want to go back to the days when he was always in the ICU,” he says. “I just want him to grow strong.”
Insulin pens and glucose monitors would be game-changers for children across South Sudan, but they remain out of reach due to pricing. As the world moves quickly toward 2030, the question is not whether these tools work, but whether the global community will make them affordable for every child who needs them. Until then, children like Ajou and Aher will continue to end up in the ICU—and some, sadly, will continue to have no access to life-saving treatment at all.
