An unprecedented effort to assess the global impact of type 1 diabetes has revealed that cases could double in the next two decades, even as millions of lives are cut tragically short by the disease, predominantly in less affluent countries.
Millions of lives hang in the balance, but the magnitude of the problem confronting the world’s public health experts has been impossible to grasp due to the lack of data.
To start with, how many people worldwide have type 1 diabetes (T1D)? It’s tough to say. Only half of the world’s countries have data for children with type 1, and fewer than half of those countries track cases of type 1 into adulthood. Recent estimates have ranged widely, from 9 million up to 22 million. And the data is sketchiest in the countries where the condition hits hardest, where most patients lack the resources to treat their condition properly.
Many patients die of type 1 diabetes before they even receive a proper diagnosis – a problem that is difficult to approach if we don’t even know the scope of it.
The Type 1 Diabetes Index was founded to address these massive knowledge gaps. The project, a collaborative effort of major diabetes charities, including JDRF, Life for a Child, and Beyond Type 1, represents the best effort yet to assess the global burden of type 1 diabetes. The index has published its first major conclusions in The Lancet Diabetes and Endocrinology … and the results aren’t pretty.
The index indicates that 8.7 million people around with world are living with type 1 diabetes. The real bombshell is that nearly half again as many – 3.9 million people – would be alive today if they had received better medical treatment. Sadly, but unsurprisingly, those that died decades before their time were overwhelmingly from low- and lower-middle income countries.
In sub-Saharan Africa, where the problem is worst, about 40,000 lives are lost to T1D every year, 23 percent of the global annual total, despite the fact that the region only accounts for about 4 percent of global cases, about 357,000 people.
Many of these problems simply come down to insulin access. In less affluent nations, insulin can be cripplingly expensive, hard to find, or completely unavailable. In an opinion published alongside the article, Serena Jingchuan Guo, MD, PhD, and Hui Shao, MD, PhD, both of the University of Florida, called for countries to “to strengthen the price regulation and reimbursement policy for insulin while building subsidy programmes to ensure insulin access and to cope with the growing demand for insulin.”
The growing demand for insulin is a serious issue. The experts with the index project expect the global prevalence of type 1 diabetes is predicted to skyrocket in the coming years – by 2040, there may be twice as many people living with the condition. There are many potential reasons for the growth in numbers. Some of them are good: As healthcare resources improve across the globe, more people with type 1 diabetes will live longer, especially in lower-income nations where diabetes life expectancy has so much room to grow. But the rate of type 1 diabetes diagnoses is also on a mysterious long-term rise, one that seems likely only to accelerate in the wake of the Covid-19 pandemic.
The authors of the study believe that their data can help shine a light on what needs to be done to improve T1D outcomes:
“There is an opportunity to save millions of lives in the coming decades by raising the standard of care (including ensuring universal access to insulin and other essential supplies) and increasing awareness of the signs and symptoms of type 1 diabetes to enable a 100% rate of diagnosis in all countries.”
The Lancet study shows that children from high-income countries that are diagnosed with T1D today can expect to lose about 11 years of their life to the disease. It’s a scary number – although we have argued that it doesn’t reflect recent advances in diabetes treatment – but it’s nothing compared to the health ravages endured by people in less fortunate circumstances.
In much of Africa, including large nations such as Nigeria and the Democratic Republic of the Congo, the average child with newly-diagnosed T1D cannot be expected to live even another decade. In lower-middle income nations, children with diabetes may lose more than half of their remaining life expectancy. In India, a new 10-year-old patient has an estimated life expectancy of 24 years, compared to 63 years for her non-diabetic peers.
Competent and accessible healthcare can be so scarce that tens of thousands of people die each year before their condition has even been recognized. The index estimates that up to 20 percent of all deaths due to type 1 diabetes are in youths that never receive a diagnosis.
The results also underline how shockingly common type 1 diabetes is in adults. T1D was once thought to be a disease mostly or exclusively of the young – it was called “juvenile” diabetes, after all – and many people, even some of those in the medical community, still think of it mostly as a childhood illness. The index makes it clear that the condition actually strikes adults more often than children. The global average age of diagnosis is 32. Misdiagnoses are rife, which only exacerbates poor health outcomes.
The Lancet study notes that efforts to improve access to insulin, blood monitoring tech, and other resources have resulted in rapid improvements to the situation in countries such as Mali and Uzbekistan. Such public health efforts are also usually followed by spikes in reported T1D prevalence, evidence of the large number of cases that are currently going unrecognized.
The Type 1 Diabetes Index is a living project, and its caretakers will continue to update the numbers as more data rolls in. If you want to help, the project’s website offers plenty of ways that you can take action yourself.