Closed Loop

Hope.

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I don’t really have a great deal of faith in a cure for diabetes. I do believe that we have lost sight of curing diabetes. While technology may be exciting (case in point), every new entry onto the market merely seems to be a pathway to the next product or upgraded system in the pipeline. There does not seem to be an end goal of eliminating the need for these devices altogether and curing diabetes. Perhaps people like me are to blame for feeding this diabetes technology frenzy.

Yesterday, I had the pleasure of attending Diabetes Research Western Australia’s Exploring Diabetes Expo to hear about some of the latest and greatest diabetes research being funded in WA.

Of course, the best thing about attending events like these is connecting with new and familiar faces in the diabetes community here in Perth. I met someone who was looking for answers to better manage his type 2 diabetes. I overheard a father talking about his newly diagnosed type 1 daughter, attending to try and get on top of it. It was also great to catch up with a few familiar faces.

Being surrounded by supporters of diabetes research and people in the scientific community, I was reminded of my time at the ADS-ADEA conference last year, where the company of people with diabetes is not the norm. I really felt that some of these people could benefit from spending more time in the company of people with diabetes.

The highlight of my morning was hearing Professor Tim Jones, head of Endocrinology at Perth Children’s Hospital, speak about closed loop systems. Despite all of the advances in technology, blood glucose control hasn’t improved in the last five to ten years and only 20% of patients are meeting blood glucose targets.

My heart sank hearing Professor Jones tell the audience that reason for this is that type 1 diabetes is simply a hard condition to manage.

I have no doubt that type 1 diabetes is a difficult condition to manage. But equally, I feel that clinics are under resourced and people fall through the cracks, unable to reach their full potential. One fabulous person with diabetes in attendance lamented her frustration at having to hear about new technologies through peers, rather than her healthcare professionals. Another friend in attendance lamented that the public system has little to be desired with it’s very long waiting periods.

The morning also introduced us to some awesome Artificial Intelligence retinopathy screening, which I’m not quite sure differed too much from that of an Ophthalmologist or even an Optometry screening.

There were also sugar free cupcakes, a coffee van and a great view of Lake Monger on a glorious Winter day.

Admittedly, diabetes research is not something that I can get excited about. Not like I do with the tech. But if there is one person that gives me hope in a cure for diabetes, it is Sherl Westlund, director of Diabetes Research WA. Sherl’s passion for the research grants her organisation provides gives me a glimmer of hope that we will find a cure for diabetes, hopefully in my lifetime.

If there’s one thing that I really do need, it’s hope.

Why I Am Waiting.

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Unless you’ve been living under a rock, you’ve likely heard of the whole We Are Not Waiting movement. You know, a bunch of people who are hacking their diabetes devices in order to enhance their functionality. Such as transmitting blood glucose data to other devices, turning a FreeStyle Libre into a CGM with alarms and even closing the loop between an insulin pump and a CGM.

You need look no further than the name of this movement to find the reason for it. People with diabetes really are at the mercy of device companies, regulatory bodies or, in the case of the snippet I read in yesterday’s paper, researchers who are currently attempting to regenerate organs in sheep!

I don’t see a cure on the horizon in the next ten, twenty or even thirty years. The business of business is business. Advancements no longer feel like a solution, but rather a pathway to the next enhancement or product. Both consumers and device companies seem too focused on feeding this diabetes technology frenzy.

The most realistic advancement that I do see on the horizon is a commercial closed loop system. That is, an insulin pump that communicates with a Continuous Glucose Monitor to automatically regulate blood glucose levels. There are a few systems currently in development in the US. Yet I don’t realistically see any of these getting into my hands here in Australia in the next five, dare I say ten, years.

I need look no further than the current insulin pump situation here in Australia. If online communities are anything to go by, Aussies are crying out for a new insulin pump option to hit the market here. There are insulin pumps listed on the TGA website that can be legally sold here in Australia, and yet we are left waiting at the mercy of distributors, device companies, marketers, financial strategists, and all of the other powers that be.

Better yet, it’s 2018 and people are still forced to do all sorts of questionable things in the name of INSULIN, the drug with a price tag that is skyrocketing by the day.

I have been reading up on the likes of hacking a FreeStyle Libre system and closing the loop over the past couple of months. There is a growing community of people here in Australia who are buidling and running homemade closed loop systems, and you can lurk or join them here.

I, however, have made the regrettable decision that I will have to wait.

For starters, I would have to commit to full time Continuous Glucose Monitoring. This is not currently subsidised for adults like me here in Australia. Nor is this, as well as the other hardware required, in my current budget while I am working toward other financial and career goals. Secondly, I don’t own a pump that is loop-able, and I don’t like my chances of being able to get my hands on one.

Finally, I’m not sure that I would be able to give any ‘we are not waiting’ efforts the due focus that they would inevitably require at the moment, with a lot of other priorities on my mind for the year ahead. As one Facebook group admin puts it, don’t bother asking for the idiots guide as these solutions aren’t for the faint headed!

I am frustrated. Not because I’m envious of others who do have the means to do so. Not because I can’t manage. Not because I don’t have good health, excellent access, good people around me or a good quality of life.

I am frustrated, because people with diabetes deserve so much better than what they’re currently getting.