Robinah Namutebi sits upon the floor of the tiny clay-brick shack that doubles as her home and a small store offering simple household wares to her neighbours in the Ugandan village of Tiribogo, about 40 km from the sprawling, tangled capital city, Kampala.
She is strikingly beautiful, though there is sadness and pain behind her cloudy eyes and her frail body betrays her 34 years. She looks to be the same age as my 14-year-old daughter sitting beside me. This, I’ve come to learn, is to be expected from someone who struggles daily to manage Type 1 diabetes in a land where access to life-sustaining insulin is limited and the crucial blood sugar monitoring supplies are out of reach for almost everyone, save the wealthy. Stunted growth is one of many complications associated with this disease when blood sugars remain dangerously high over the course of time.
For 23 years, Robinah has managed to stay alive against many odds, but only barely. She tests her blood once a month when she can get to the clinic in Kampala, whereas most people living with Type 1 in developed countries test multiple times a day. This tells them exactly how much insulin they need, but Robinah has no such luxury.
She fears death if she takes too much insulin, so she errs on the side of caution and her sugars remain perilously high. Now, her eyesight is fading, she has lost a finger and a toe and her feet look as though permanent frostbite has settled in. She’ll likely lose her legs below the knees before long – the cruel cost of consistently high blood sugars over the years leading to diabetic neuropathy, or nerve damage restricting blood flow to the extremities. Perhaps the cruelest side effect of her uphill struggle to manage diabetes is the failure of her kidneys. For Robinah, dialysis is not an option and the medication she needs to manage this new condition is even farther from reach than her insulin.
Robinah didn’t choose this disease. The common misconception surrounding diabetes throughout the world is that diet and poor lifestyle choices bring it on. While lifestyle choices like diet and exercise can sometimes be triggers for Type 2 diabetes, this isn’t the case for those with Type 1.
Robinah, unfortunately, has Type 1 diabetes, a chronic autoimmune disease in which the pancreas is rendered obsolete, no longer able to produce the insulin needed to convert glucose into energy. This condition can only be managed with regular glucose monitoring and daily injections of inulin. The cause is unknown, there are no preventative measures and without insulin, people with Type 1 diabetes die.
I have come to understand Type 1 diabetes all too well since my son was diagnosed a year ago. I remember with vivid clarity the feel of his limp body as I carried him into the emergency room that morning. He was in severe diabetic ketoacidosis (DKA), nearly in a coma, and if we were in Uganda or so many other countries where the understanding of this disease is limited, he would likely have died within a few days.
But we live in Canada where access to healthcare is ubiquitous, and a year after my son’s diagnosis, we are managing well and he has every opportunity to thrive with the support of our medical team at the Peterborough Regional Health Centre.
Unlike Canada, Uganda’s healthcare options for this subset of the population offer a far different story. Since 2009, children with Type 1 diabetes have been supported through a Novo-Nordisk-led initiative called Changing Diabetes in Children (CDIC). This program was never meant as a permanent fix, though; it simply offered time for Uganda to establish a sustainable plan to support children living with Type 1 diabetes, and that time is running out. The program terminates in 2017 and beyond that, the children who are managing their disease today may be dead when their access to insulin and testing supplies runs dry. Robinah never had a program like this. She had to fend for herself, much like the children currently covered by the program will have to do after CDIC exits Uganda. Her frail condition is the warning sign of what may come to pass.
The thought that little time is left before the program ends is heavy on my mind as I sit in a remote village outside of Gulu in northern Uganda, where I speak with Ocaya Bonds, the father of 14-year-old Brenda Ochan, who was diagnosed with Type 1 in 2012. Ocaya tells me of the fear that gripped him when he rushed to find help for his dying daughter. She was in the grip of yellow fever, the family was told by doctors at the first two clinics they visited. Such misdiagnoses are all too common in Uganda, for understanding of the disease is rarely present, especially in the rural clinics. A drip for cerebral meningitis, yellow fever or malaria is often the healthcare system’s first response to children presenting with symptoms of Type 1 diabetes and when a child dies, these other diseases take the blame.
But Brenda was taken to a third clinic, and “when we took her there, she was almost unconscious,” Ocaya recalls as we speak outside his modest hut under the warm August sun. “I thought she would not even survive.”
Insulin saved her and the light came back into her eyes.
When Ocaya describes that moment I imagine what it must have been like for the parents of the first children in the world treated with insulin in a Toronto hospital in 1922. Like Brenda and my son, they awoke to new life when insulin coursed through their bodies. It’s heartbreaking that nearly 100 years later, so many people are still struggling to manage such a manageable disease.
The fear in his voice is hard to miss when Ocaya discusses the possibility that CDIC funding may end with no sustainable solution in place. He is a teacher with his own modest plot of land for subsistence agriculture, and Brenda’s medical supplies would swallow half of his income. Some days it’s a struggle to find the money to cover the cost of transportation to the city so she can get her free supplies, he admits, so how can he afford to keep her alive without government or industry support?
In Uganda’s north, I meet many families and children with similar stories. There’s Mokisa Jonathan, whose mother still lives in war-torn South Sudan. He’s cared for by his grandmother, whose main worry, aside from the daily struggle to balance glucose levels, is the fact that Mokisa is not allowed at school. He cries every day when his friends make the mile-hike to class, but the school doesn’t understand his disease and is afraid to take on the responsibility. He tells me he wants to be a doctor so he can help other people like him. He wants to learn. He wants to live, but without insulin he will die.
There’s Michelle Bonono, a sweet 7-year-old with the broad smile. Her grandmother cares for her as well, for her mother must work in Kampala – some 350 km south of Gulu – where she has little spare time to oversee diabetes management. Michelle tells me she wants to be a nurse so she can care for her grandmother when she gets old. There’s a generous spirit in all the children I meet, perhaps an inherent gratitude amassed through knowledge that death is always nearby with this disease.
As I journey south to Kampala for my final week in Uganda, I think about the Sonia Nabeta Foundation, on whose behalf I embarked on this exploration and whose goal is to counter the fact that death remains so close for people living with Type 1 in Uganda. The foundation was born out of the grief that followed the death of its namesake in August 2015. Sonia Nabeta lived with Type 1 diabetes in Uganda for 16 years before a sudden drop in blood glucose, otherwise known as hypoglycemic shock, took her life. Her family, led by sister, Vivian, channeled their grief in the belief that no person anywhere living with Type 1 should share their beloved Sonia’s fate.
And here I am, 10 days into my trip, at Camp Tuyinza (meaning ‘we can do this’), a camp to bring together healthcare workers and young people living with Type 1 diabetes for four days of education and solidarity organized by the fledgling Sonia Nabeta Foundation.
There is hope on the horizon. Her royal highness, Queen Sylvia of the Kingdom of Buganda, the largest of three kingdoms in modern day Uganda, is here to launch the foundation and welcome 54 children from across Uganda and as far away as Ghana to Camp Tuyinza. Her presence alone is enough the draw attention to this challenge, and the media has come in full force.
Raising awareness is critically important, says Dr. Gerald Mutungi, head of non-communicable diseases with Uganda’s Ministry of Health, because as it currently stands, Type 1 diabetes is far from the minds of most healthcare professionals.
“After diagnosis, then the challenge becomes the constant supply of insulin,” Dr. Mutungi says. “They can’t survive without insulin so I think now the challenge is to make sure the insulin is available, the monitoring devices are available and the children are educated and the parents are educated in self-management.”
“Insulin,” he reiterates, “is life, so we’ll make sure we prioritize (access). That is our hope.”
And this is the hope for many families and children across Uganda – Mokisa Jonathon, Michelle Bonono, Brenda Ochan … the list goes on.
Six weeks after I return from Uganda, I receive the first of what I dread might be a more common occurrence than I can bear. Jackie Nakagwa, a 15-year-old natural leader at Camp Tuyinza with a broad smile and a deep laugh, died after slipping into diabetic ketoacidosis. My daughter played the ukulele with her camp. She seemed to be managing well, but nothing is sure with this disease and complications are inevitable. Without access to knowledge, more children will die,and for those that survive, the fate of Robinah Namutebi, the beautiful 34-year-old whose body is shutting down, awaits.
Nearly 100 years after the discovery of insulin, this is an unacceptable reality.