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Nathan Rubangakene, (middle) a program manager for the Sonia Nabeta Foundation, during a home visit with a child and his parents in Minakulu, northern Uganda. The Sonia Nabeta Foundation provides education, support and medical donations to children and young adults living with Type 1 diabetes in Uganda. Direct Relief and Life for a Child support the organization with medical donations for patient outreach. (Photo courtesy of the Sonia Nabeta Foundation)
When she was six years old, Hamidah Nabakka received news that would alter the course of her life in Wakiso, Uganda – she was diagnosed with Type 1 diabetes.
“My family was at the breaking point financially. My mom was healing from an accident, and she was busy with my young brother. My diagnosis wasn’t happy news,” Nabakka, 23, told Direct Relief. “I remember when they told my father he had to buy syringes and [diabetic test] strips for me, it was a total shock,” she said.
Beyond the financial impact, Nabakka soon found out that her condition came with additional costs.
“I wanted to play netball but didn’t get that chance,” she said, having been prevented from playing by her parents and school administrators, who were scared after she passed out a couple of times due to low blood sugar. “They said no running, no netball, no serious physical activity… It was one of the things that really got me down about my condition. It led to low self-esteem,” she said, noting that social stigmas surrounding diabetes in Uganda further exacerbated her condition.
Nabakka had to persevere throughout her childhood without someone knowledgeable to whom she could turn for questions and support. But in 2016, she found out that she could be that person for other kids and also receive care through the Sonia Nabeta Foundation, or SNF.
“It was a miracle, them coming into my life,” said Nabakka, who is now an outreach manager for the organization.
Since 2016, SNF has provided a wide range of programs that care for children with Type 1 diabetes at no charge to the patients. They currently treat about 2,000 children.
But even as SNF has made significant advances in the complicated medical and social fight against diabetes in Uganda, SNF and their patients, whom they call “warriors,” are facing a shortage of perhaps the most basic element within a diabetes care toolkit – syringes. This has led to an increasing number of patient infections and complications leading to hospitalization.
In the northern Uganda city of Gulu, Nathan Rubangakene, 27, an SNF program manager who has Type 1 diabetes, said about 20% of the children he cares for had developed infections due to needle reuse since the onset of the syringe crisis last December.
“There is a crisis,” said Vivan Nabeta, founder and executive director of SNF, which is named for her late sister, Sonia Stephanie Nabeta, who died from diabetes complications in 2015. Nabeta said a similar donation shortage occurred in 2018, which got so severe that she paid for syringes out of pocket and made personal appeals to senior executives at syringe manufacturers. “The goal should be a syringe per child per day,” she said.
Last month, in response to the crisis, Direct Relief sent 342,000 insulin syringes and 20,000 insulin pen needles in response to a request from Life for a Child, a nonprofit that is focused on preventing pediatric deaths from diabetes around the world. SNF, a partner of Life for a Child, will receive about a quarter-million of these syringes.
Hamidah Nabakka, SNF outreach manager (Photo courtesy of SNF)
The crisis in Uganda for donated standard syringes comes amid a broader global shortage of commercially-available, auto-disable, one-time-use syringes which are commonly used to administer vaccines in middle and low-income countries. UNICEF projected the shortfall to be as high as 2.2. billion auto-disable syringes this year.
For SNF’s patients, the shortage has led to problems beyond immediate physical symptoms – made all the more frustrating since insulin is widely available.
“Some parents misunderstood and thought their children were being difficult, but they were refusing [to inject themselves with insulin] due to pain,” Rubangakene said, referencing the dulling effect that occurs with multiple uses of the same needle.
“The children have medicine, but they can’t get the medicine into their bodies,” he said. I cannot promise them everything will be well but am trying to give them hope… If we have to inject every day with the same syringes, we must adjust,” he said.
About 110 kilometers southeast of Gulu, in the town of Apac, SNF volunteer nurse Michael Mugoya described a similar situation.
“It’s a very big problem here. With the shortages, there have been new problems,” he said, referring to infections and interruptions in disease management. “Most cannot afford the syringes on the market,” he said, which also happen to be larger, and thus more painful than the needles they use for insulin.
Hamidah Nabakka (purple shirt, front) with SNF patients, whom they call “warriors,” during Camp Khunyala, an SNF program. (Photo courtesy of SNF)
“A human being with a heart, when you see the person you’re taking care of, and you cannot offer the help that’s recommended, I am frustrated. But still, we do not stop at that. We always look for means of improving, to see if we can save the situation,” he said.
Addressing the whole problem
As SNF has worked to increase the supply of donated syringes in Uganda, they have continued operating their existing programs to help increase access to care and education for children with Type 1 diabetes. A major focus for SNF is their support, along with the Ugandan government, missionary hospitals, Life For a Child, and Novo Nordisk, for more than 30 Type-1 diabetes clinics in Uganda. SNF also organizes a network of motorcycle taxis (called “boda-boda” locally) that distribute medicine and supplies, educational clinics to share knowledge about the disease and best practices for self-care, scholarships, community organizing for advocacy around issues related to the disease, including to confront stigmas, and home visits to ensure proper storage of medicines, conduct checkups, and to work on addressing nutrition-related challenges.
“People have come to rely upon us, so we started focusing on social determinants of health,” Nabeta said, explaining how she believes SNF can be most effective at improving outcomes for pediatric diabetes patients in Uganda.
In addition to the acute donated syringe shortage, ongoing barriers to pediatric diabetes care include a lack of accessible transportation, food shortages, and social stigmatization – which can be so severe that it leads to parents abandoning their children.
Insulin is packed in a cooler for transport during SNF home visits. (Photo courtesy of SNF)
Nabakka said some kids who receive care at SNF clinics travel from over 25 kilometers away, sometimes on foot. Even by bus, the journey can take some kids two hours, by which time they arrive hungry and tired.
“They are at the clinic. But they are sad,” Nabakka said.
Nutrition-related concerns are also common, she said, due to the specific needs of diabetic patients. “They get worried about the food they’re supposed to eat [as diabetic patients],” she said, since they are not sure they will be able to obtain the food needed to adhere to the recommended diet.
Local perceptions about diabetes present significant challenges for kids facing the disease as well.
“Very many parents think it’s witchcraft. They are tempted beyond measures to find out from a witch doctor what is “really” the problem with their children. Or they reach for herbal remedies. Or they can take it as someone who is unlucky or burden of guilt, or you did something, and you have a burden that came through your children,” said Nabakka.
“We believe education is an important determinant of health. It also helps our warriors to gain confidence, “she said.
“The mental well-being of warriors is very important. We let them know they can achieve their dreams. To know that we’re here for them. They may worry, but they need to know there is someone out there who is there for them,” Nabakka said.
It’s personal
Beyond family members and neighbors, diabetes-related traumas can also come from medical providers. Rubangakene recalled that, when he was diagnosed, the doctor was so cold that he thought the doctor was punishing him by telling him he needed to stop eating sweets and to inject himself with insulin every day for the rest of his life. Beyond that, he was not given even basic context about this disease.
“I thought I was the only kid who had diabetes in the whole world,” he said. “I thought I was going to die within a year.”
But as time went on, he said, his stress level reduced as he gained more knowledge from reading information online. Eventually, he began to make plans for the future, which included becoming a healthcare provider to have a chance to explain to his patients their conditions more sensitively and comprehensively than what he had experienced.
For Mugoya, SNF similarly provides an opportunity to address the ills he experienced.
Two students, who attend a top school in Apac and receive care from SNF, receive school materials from Michael Mugoya, a SNF volunteer nurse (R), is on the right, and his colleague, Jimmy (L), also a nurse. (Photo courtesy of SNF)
“It was out of passion [that I joined SNF]. I used to see these kids come around [to the hospital with diabetes] and, before, they were dying. In most cases, there was a misdiagnosis,” he said. “If a kid is suffering somewhere, as a nurse, I have to take action,” he said.
Like so many SNF volunteers and staffers, the mission is also profoundly personal for Nabeta, whose family is from Uganda.
“My sister died from hypoglycemic shock: one minute you speak to her, and the next minute, she was gone. To make her young life meaningful, we established this foundation,” she said.
As syringe availability remains an issue, among other challenges, the guiding message to the children SNF cares for remains consistent.
“They should know that a diabetes diagnosis is not the end of everything. They should know they can still achieve everything,” said Rubangakene.
Direct Relief, through Life for a Child, has supported children and young adults with Type 1 diabetes in more than 40 countries. Since 2018, Direct Relief has sent 462,000 insulin syringes, 100 reusable insulin pens, 16,632 vials of insulin, and 23,060 pen fill cartridges of insulin to charitable and no-charge diabetes programs in Uganda.
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