Case #71 Living with technology Interview

Living with medical technology

December 19, 2024

Interview with Rose and Angus Baker†

Until a century ago, anyone who developed Type 1 Diabetes died, usually within a matter of months. Technological advances in managing the disorder mean that people with T1 can now not only survive but have the potential to live long and healthy lives with these technologies.

What is Type 1 Diabetes?

T1D is an autoimmune disease. The body’s immune system attacks its own insulin-producing cells in the pancreas, leading to a depletion and eventually absence of insulin in the body. Glucose is needed to fuel cell function, and insulin is what allows cells to access the glucose in the blood. Lack of insulin means glucose builds up in the bloodstream, leading to high blood glucose levels (BGLs) but the body’s cells cannot access it and begin to starve. This in turn triggers the body to burn fat to provide more fuel that cannot be used, and generates ketones (acids). An excess of ketones leads to a condition called diabetic ketoacidosis. Without insulin, this will eventually be fatal.

When was your son first diagnosed and what technologies allowed him to get his BGLs under control?

Our son was 11 years old when he was diagnosed, and has been living with T1D now for about seven years. At first we managed everything manually, with insulin injections before food each day, and frequent finger pricks to measure BGL. Given his age, we and his medical support team thought it was important for him to be able to understand and manage these processes confidently before moving onto more technology-mediated management. We would weigh and measure his food and look up in a booklet how many carbs a meal or snack was likely to contain, and from there work out how much insulin was needed. We soon found an app that made this process easier and allowed him to keep track of the rates required as they changed regularly in the early days while his pancreas was still producing some insulin.

A couple of months in, he started using a continuous glucose monitor (CGM) a sensor worn on the body and connected via Bluetooth with our smartphones, which saved a lot of finger pricks! We bought him a smartphone considerably earlier than we would have otherwise so he could take advantage of the readings himself—no objections from him about this! Especially as he got to keep it with him in situations where other kids had to relinquish theirs. We could set it to sound an alarm if his BGL went above or below a certain threshold, which allowed him to treat an imminent high or low before it actually occurred. This was a big advance on relying on finger pricks for managing BGLs, and good for our peace of mind. When he went on his Year 6 school camp, we were able to monitor his BGLs from home, and could call him or a teacher if he had a hypo during the night. (Hypoglycemia or a ‘hypo’ occurs when too much insulin is injected for the amount of carbs eaten and is treated with a quick sugar hit. People with T1D always keep a few lollies or sugar sachets handy. Unless treated, hypos soon start to impact cognitive function and eventually lead to loss of consciousness.)

Has the technology changed over the years?

Our son started on an insulin pump after a few years, and it was a game changer. Instead of having to inject himself several times a day, he could now enter his carb intake into the pump each time he was about to eat. One thing that was particularly nice about using a pump is that it had a pasta setting which could deliver very small amounts of insulin over time. We had stopped having pasta because it takes a long time for the carbs to be processed and the resulting glucose to be delivered to the blood. This creates a dilemma. If you deliver enough insulin for the carbs you’re eating in one go, you have a hypo because the carbs are released more slowly than the insulin acts. The alternative is to have several very small injections over a few hours but (i) insulin pens can’t deliver such small doses, and (ii) as good as pasta is, who wants more injections!

How have recent advances impacted you?

Moving to the pump really helped stabilise our son’s average blood glucose levels. The pump delivers insulin based on the entered carbs intake and input from the CGM sensor. Most recently, the software on the pump was updated to include machine learning models that better predict insulin requirements across the day, and this has noticeably improved average glucose levels. At the same time, it has substantially reduced the number of hypos, particularly overnight, from several a week (sometimes the alarm would go off every night) to less than one a month. Talking to other adults on the new pumps, it seems the real benefit is that it is now possible to manage glucose levels to be within the target range virtually all the time without the high mental load this used to entail.

Medical technologies are developing all the time. Is there a ‘holy grail’ technology people with T1D are looking forward to?

I guess the holy grail would be somehow to replace the insulin-producing cells that have been lost, to remove the need for external insulin delivery and reinstate the normal self-regulating process in the body. There are transplant options available in certain cases now, but they have several disadvantages that mean they are really only used in rare situations where the common treatments lead to complications. People are working on genetically engineering cells that produce insulin and seem to be able to avoid the autoimmune condition that destroyed the body’s original cells, as well as being recognised as native cells, so avoiding or reducing the need for immunosuppressants. There is also work on medications that delay or slow the onset of the condition. New types of insulin might also require less targeted delivery, providing a supply that fits in better with the body’s natural insulin-management processes.

How does being a Christian impact living with T1D and the medical technology used to manage it?

We are thankful to God that we live now and not over 100 years ago, and that our son is alive and well. Thankful for the scientists who did the research and created the technologies that have made such a difference to living with T1D, even in the last few years. Thankful that we live in a country where these technologies are subsidised by the government, and not prohibitively expensive, which they would be otherwise.

We know that we are all dependent on God to sustain us every moment, but living in complete dependence on expensive medical technology makes it harder to buy into the illusion that we are self-sufficient. I am constantly aware that in a natural disaster or war, the survival of people who depend immediately on medical technologies to function, is much more precarious than for those of us who don’t.

Above all, we are comforted by the knowledge that in Jesus, even death has lost its sting. And so like any other Christian parent, we pray above all that he will stand firm in Christ, and look forward with him to the new creation when all of God’s people will be made whole and there will be no more sickness or suffering.

† Names have been changed for privacy.