By Alexis Munier, Senior Communications and Outreach Officer, The Defeat-NCD Partnership
Today is my “diaversary”. This May 13th marks the 28th year that I have been poked, prodded, and injected a dozen times or more per day since I was diagnosed with type 1 diabetes at 13 years old. It is the one day each year that I reflect honestly on what it means to be diabetic. I won’t lie—that usually involves a few tears.
But this year, my first at The Defeat-NCD Partnership, that brief moment of self-pity is gone. Three decades is a long time to live with a chronic illness, but it is a luxury that my fellow type 1s in low-resource countries do not have.
When I was first diagnosed as an adolescent, I mourned the loss of life as I knew it. My ever-positive mother insisted diabetes would never get in the way of my dreams. I was not so sure. My grandfather was also a type 1 diabetic, so I knew exactly what managing the disease would entail. Finger pricking, blood tests, insulin shots, nasty infections, severe hypoglycemic episodes…it wasn’t pretty.
While frightening at first, managing my diabetes soon became little more than an inconvenience. Because I had health insurance, I had access to the best insulins and glucometers available at a reasonable cost. In time, the advent of the insulin pump, continuous glucose monitors, and analog insulins has made my condition easier to manage. Sure, I struggle with highs and lows just like any other diabetic, and even one near-deadly case of DKA, diabetic ketoacidosis.
Overall, I was lucky to have access to one of the best healthcare systems in the world, and here in my new home, Switzerland, the care is even better. I have resources to keep my hemoglobin H1C, a standard measure of diabetic control, in an excellent range and maintain good health. All this, by the accident of my birth into a high-income country.
Diabetic children living in low-resource countries are not afforded the same right to healthcare that I am. Their access is limited at best and often non-existent. In rural Mozambique, for example, the life expectancy of a child diagnosed with type 1 diabetes is just seven months. In sub-Saharan Africa, the overall survival rates are abysmally low—in 2000, it was estimated that just 1% of children are alive after six years of the disease.
In contrast, in developed nations like the United States, 98% of type 1 diabetic children are alive after the same period of time. But with the skyrocketing price of insulin in the US and no right to universal health coverage (UHC), the fate of many Americans who rely on it to survive is unclear. This makes the list of countries where UHC is available to people with diabetes an awfully short one.
It is not a question of innovation or drug development that prevents children with diabetes from thriving. Insulin was discovered in 1921, and all the tools and medicines to manage type 1 diabetes exist. I should know; I use them on a daily basis. All too often, lack of access to essential medicines like insulin results in terrible suffering, and ultimately, premature death. Even when there is access to insulin in large cities and hospitals in low-resource countries, there is often a financial barrier to continuing proper treatment.
When a vial of the lifesaving hormone costs a week’s wages or more, as it does in most of the world, families must make the tough decision of whether to buy food or medicine. In other places, insulin might be provided without cost, but patients are obliged to take a blood glucose test that is subject to a high fee beforehand. I want these children to have the same advantages that I do, with properly managed self-care.
From the structural challenges of national government buy-in and funding, to equipping community health centres with knowledge, medical staff, and supplies, ensuring equitable access to diabetes-related healthcare is not easy. Here, the devil is in the details, and there are a million ways for the process to be improved. Fragmented health systems, inefficient supply chains, and corruption all pose profound problems. These are problems with clear solutions if only we have the courage, dedication, and wherewithal to implement them.
Type 1 diabetics face incredible challenges in low-resource countries. But just as I have the right to diabetes medicines, supplies, and healthcare, so should they. With affordable access these vital items, type 1 diabetes is a manageable condition and those with the disease can lead full and healthy lives.
So this year, I’m celebrating my diaversary not with a tear, but with a smile. Working with The Defeat-NCD Partnership has renewed my drive to advance UHC for those with non-communicable diseases, including type 1 diabetes. UHC is not only a step in the right direction, it’s the only way that we can eliminate the suffering and stigma that go hand in hand with type 1 diabetes. It is the first step of a long journey, and it won’t be easy.
But it’s worth a shot.