Welcome back to the Poetic Diabetic.  Happy Belated National Diabetes Day and Happy Thanksgiving. While I wish I never had diabetes, I have a great deal to be thankful for. I am thankful I was diagnosed within two months of my pancreas’ failing to produce insulin. I am thankful that Lionel Banting discovered insulin 100 years ago. I am thankful my family has the financial resources to afford insulin. I am thankful that within a week of my diagnosis I had a CGM (continuous glucose monitor) on my body that reports my glucose levels at all times. I am thankful that I have a technologically sophisticated pump on my body that communicates with my CGM and helps me control my glucose levels. In other words, I have the best access to medical care in the world, which leads to the meat of this blog: We really need a cure for Type 1 diabetes because access to care in the US is not where it should be (insulin rationing is real), and in the many lesser developed countries in the world, a Type 1 diagnosis might never be made. Thus, the onset of  Type 1 becomes a death sentence.

We have an insulin affordability crisis here in the US, but equally important is the insulin affordability / diabetes care crisis abroad. The Type 1 Diabetes Index (https://www.t1dindex.org/) gives us great insight into just how catastrophic the access to care for Type 1 patients in developing countries is. From the Index’s website: “The T1D Index measures how many people live with the condition, the healthy years of life it takes from people living with type 1 diabetes (T1D), and what can be done to reduce its impact.”

The Lancet laid out the findings of the T1D Index: in 2021, 8.4 million people in the world had type 1 diabetes. 1.5 million (18%) were 20 or younger, 5.4 million (64%) were 20-59, and 1.6 million (19%) were 60 or older. Looking at those numbers, it would be logical to think that the majority of T1D patients in the world are adults, but what the article also highlights is a mystery number they refer to as the “missing prevalence,” i.e., those people who die before even being diagnosed, estimated to be 3.7 million in 2021. Many of these “missing prevalence” people probably never reached adulthood because of the disease.

One of the big takeaways here is that the majority of those cases are from developing countries which accounted for 1.8 million (20%) of the global total, and where the life expectancy of a 10-year-old newly diagnosed with type 1 in 2021 was only about another 13 years compared to 65 more in developed countries. The Index estimates that by 2040, the diagnosis of T1D will increase to around 13.5-17.4 million (that’s 60-107% higher than right now!) with the developing countries taking the brunt of it.

That’s a lot of data and numbers, so let’s summarize. Eight and a half million people in this world have type 1 diabetes, but that’s only the ones we know about. Many of these people don’t live past age 20, which speaks to the difference in life expectancy of more than 50 years between developed nations and developing ones. Let that sink in. Fifty years. Just because of the lot you drew in the birthplace lottery.

The crucial job of the index, and why it’s so important, is that it highlights the lack of access to diagnosis, to insulin, to glucose meters or CGMs causing the discrepancy in life expectancy for a type 1 person in developing countries versus developed countries. This presents a bleak picture of the human cost of the disease around the world. But at least we now have a picture, one that will evolve as new information is added. The name of the game in all of this is access, access, access. If we can increase access, we can save lives.

Effects on physical health and life-expectancy notwithstanding, the goal of the JDRF is to eventually include an assessment of the toll that T1D takes on mental health, economics, and quality of life overall. It is their hope that armed with this information, we will be able to change these poor outcomes to better ones, if not eliminate them entirely. And as mentioned, that all begins with access.

Over the summer I had a glimpse into how diabetes is handled abroad. I was fortunate enough to volunteer in a camp in the Dominican Republic for children with Type 1 diabetes. Through the efforts of their local organization, “Aprendiendo a Vivir” (AAV), the children I worked with had access to insulin; however, it was mostly administered on a “need to have” basis. This meant that campers would only have insulin administered when their blood sugar is high, rather than before they eat. While this seems fine in practice, due to their lack of CGMs, it was essentially a mad dash to 300 for almost every kid.

The fact that these children weren’t phased by these numbers indicates either a lack of education regarding diabetes or that these levels are a common occurrence for them. Neither thought is very reassuring. Though I can’t comment on the treatment plan for these kids outside the camp, I can confirm that AAV regularly gives them access to free insulin, and their treatment plans are all handled by a local medical professional. In summary, the human toll of type 1 diabetes around the world is real and we need to strive for improvement and a cure.