When my son got Type 1 diabetes at the age of 2 in Canada, I had zero sense of what it really meant. Diabetes, in my mind, was something that older people got because they had issues of overweight or poor diet. How could my slim, cute little boy, whose biggest passion at the time was late night pillow fights, get something as awful as this? All he ate was mashed vegetables and porridge, with an occasional soy dog thrown in. What did diabetes have to do with him?
On the way home from the hospital, I called my folks from the taxi, and heard it in my dad’s voice; he knew a bit more than I about Type 1 diabetes, and I could tell he didn’t think my son would survive very long. It was awful.
The next day, a four hour session at the Children’s Hospital of Eastern Ontario introduced me to the difference between Type 1 (the autoimmune disease) and Type 2 (the kind one gets from a mixture of genetics and lifestyle). In just four hours, we learned how our lives, and that of our little boy and his older sister, would change for ever.
Luckily, it turns out that Type 1 diabetes treatment has progressed by leaps and bounds since my father first learned about the disease. Our Canadian doctors started my son on a mixture of rapid and intermediate acting insulin, injected two-three times a day, and we spent the next few years weighing everything he ate on a little scale, looking up in a booklet the information that told us how many carbs there were per gram of whatever it was he was eating, and adjusting the amount of rapid acting insulin in his shots accordingly. It was agonizingly slow, cumbersome, and awkward, but it worked. Each meal was a production, restaurants were a bit of a nightmare, but we figured it out, and over time, it became second nature.
The problem, of course, was that we often over or under-estimated the carbs. Also, we learned, different carbs behaved differently when mixed with different foods; the carbs in pizza, for example, did things that the same amount of carbs in rice did not. As a result, Sacha’s blood sugar was always trending either too low (very dangerous in the immediate term), or too high (also dangerous, but over a longer time period). We watched him like a hawk every minute, pricking his finger 10-15 times per day to figure out where his blood glucose was trending. I slept next to him every night, not willing to risk another incident like the time he went into seizure, shaking uncontrollably because his sugar had run too low. Twenty or thirty minutes of that, we knew, and brain damage could ensue. I tested at the beginning and end of the night, and my ex came in in during the wee hours of the very early morning to do her turn. We were exhausted, but at least we knew he was safe.
Fast forward ten years, and the world of Type 1 diabetes management in the US is entirely different. My son Sacha wears a T-Slim insulin pump and a continuous glucose monitor, and the whole system is so smart that he almost never needs to test his blood sugar on his own. The multi-thousand dollar machinery he wears around his belt, accompanied by sophisticated algorithms, do the job for him. All he has to do is set some general settings with his physician every three months, and then type in the number of carbs he eats at every meal. He then presses a button 10-15 minutes before the meal, and presto, the machine does the work. Even then, if he drifts over or under his recommended blood glucose, the insulin pump auto-corrects in the hours to come.
Before this magical pump, Sacha’s three-month average blood control measure (called an “HbA1c” test) was in the high 7s and low 8s, decent but not in the recommended zone. This last time, he tested in the mid 6s, a remarkable score for someone his age, growing as he is every day. Growth hormone wreaks havoc with blood sugars, but Sacha’s average control is almost good as a boy without the disease. Thank goodness for T-Slim.
This technology is amazing, but it is also wildly expensive, of course. I recently left my job to start a new company, Azimuth Social Research, but am set for health insurance for 18 months with the help of COBRA, America’s way of protecting people who leave a job that provided them with health insurance. Once that goes, I don’t know what kind of coverage we can get; will have to investigate in about a year. Insulin costs hundreds of dollars a vial, and the pump supplies, and the pump itself, are like the GDP of a small Caribbean nation.
When I visited Uzbekistan last year for Life for a Child, an Australian charity that supplies tens of thousands of kids in poor countries with insulin, I learned there were only a handful of insulin pumps in the entire country. Everyone else was making do with shots and Ukrainian or Russian insulin, which did the job, but was not optimal. Blood glucose tests were rare, as that equipment, which costs only a few cents to make, is still in very short supply, and far too expensive for the 10-15 tests a day we once did when Sacha was little.
I’ve done other visits for this group in India, Mexico, Morocco, and Tajikistan, and it’s always the same story. Low per capita GDP leads to sub-optimal diabetes management with low-tech tools, and while there are differences between patients and clinics, the outcomes are rarely as good as what my son just achieved with three months on the T-Slim. As a result, these young patients will start having complications in their twenties or earlier: neuropathy, retinopathy, and much more. My colleagues and I have shown in a scholarly study that just a small addition of higher-tech tools can lead to much better outcomes.
Every time I think about how Sacha’s life is affected by this chronic disease, I try to think of the thousands of kids with Type 1 that I have met while visiting clinics for Life for a Child in India, Tajikistan, Morocco, Mexico, and Uzbekistan. None of them have the advanced (and wildly expensive) analogue insulins my son has access to every month through Walgreens, everyone re-uses their hypodermic needles (which my son no longer needs because of his insulin pump)., Very few have seen or heard of a continuous glucose monitor, another vital tool in Sacha’s daily diabetes management regimen. (Without the continuous data from that monitor, the T-Slim algorithm can’t function)
There is no question that my son has been dealt a rough hand with Type 1 diabetes. He can’t eat what he wants when he wants, and he has to watch his blood sugar every moment of the day, even while sleeping. Food, for him, is like a poison, the only antidote to which is insulin, administered in just the right micro-dose, at just the right times, all throughout the day and night. Exercise, food, alcohol, hot weather and even emotions can all impact his blood glucose, not to mention the unknown and unmeasurable effects of different hormones secreted without warning at different points throughout the day.
And yet, Sacha is so much better off than children and youth afflicted by this disease in most parts of the world. One day, I hope he will understand these gradations of suffering, and find a way to help those less fortunate than him. It will ease his own pain while helping ease that of others.