Estifanos Balcha, now 20 years old, was diagnosed with type 1 diabetes when he was a young child living in Addis Ababa. For many years, Estifanos did not have consistent access to insulin and he severely struggled with managing his condition, doing so without family support and homeless for much of his childhood. Estifanos is now a part of a community of other young people living with type 1 diabetes through the Ethiopia Diabetes Association. As an advocate, he has a strong call to action: “The government must get involved with this issue. Let them see the work. Let them get involved. Let’s see what the government can do. Let them say […] we are here.”
What Estifanos’ story teaches us
When Estifanos was very young, he began to experience symptoms such as frequent urination and extreme thirst. He went to the hospital but he struggled to find an accurate diagnosis. Eventually, he learned that he had diabetes and would be dependent on insulin for the rest of his life.
Type 1 diabetes is a condition that can impact people like Estifanos very early in life, and can be incredibly challenging for those living in poverty. As Misrak Tarekegn, a community advocate who has supported Estifanos, explains: “There is this thinking among people that diabetes is a disease of the rich. But when you see the rural areas and the way we live, it’s not like in other countries with the unhealthy eating and lack of physical inactivity as they say. That’s not us […] It was said that kids don’t get diabetes. A kid with diabetes who shows up at the doctor is not easily diagnosed.”
Estifanos does not have a lot of family support and, “from the age of 6-13, I lived on the street. I was really tested at that time. I used to be an addict. I took them to forget my problems.” During this time, it was often uncertain where his next meal would come from, and his blood sugar often dropped dangerously low. At times, his only means of controlling his blood sugar was to use the refrigerator in local shops to store his medicine and occasionally he had to resort to stealing soda when he was not able to access insulin. The impact of living with a severe, chronic disease without emotional, social or financial support was incredibly taxing, and Estifanos felt : “I didn’t always take my medicine appropriately. I used to mess up the time and sometimes I just didn’t care.”
But as he reflects, “this life [on the streets]… pushed me to look for something better.” Estifanos is now an advocate and part of a community of other young people living with type 1 diabetes through the Ethiopia Diabetes Association. Today, thanks to ongoing social and emotional support, Estifanos is feeling better and able to manage his condition on his own.
Unfortunately, Changing Diabetes in Children, the program that sponsors EDA and provides free insulin to children and young adults like Estifanos is currently scheduled to end in 2020 and he worries about what will happen after that. Sustainable access to care is critical for young adults like Estifanos given how much of a burden insulin management can be in low-income settings.
In Misrak’s closing words: “Starting with all health professionals and high government officials, the fact that they cannot accept that this is a problem for our country will always be a barrier to our work. So what we want to tell the government is even if their numbers are 10 or 5 percent, each life has value.”
Estifanos continues to share his story in hopes of future policy change. As he stated while participating as a participant of the NCD Alliance “Our Views, Our Voices” forum in Geneva, Switzerland in October 2017: “It [my life] was so hard I didn’t want to live, but now I have a chance.”