Dear CBC Editorial Staff,
My boyfriend shared this article of yours, Health officials warn of hacking risk in certain insulin pumps, and after our conversation about the content, I felt compelled to respond. As an American who dates cross-border I’ve become keenly aware of the differences in our approach to care in each country. First of all, I commend your country’s approach to insulin pricing. Your article about Americans crossing the border for fairly priced insulin was outstanding.
The most common standard of care for type 1 diabetes is through multiple daily injections. Type 1 diabetics will take a mixture of long-acting insulin and short-acting insulin. Drawing and testing blood from the fingers confirms blood sugar remains between Health Canada’s guidelines of 4-10 mmol/L. This balance is one that is often difficult to maintain. Compliance to Health Canada’s recommendations is alarmingly low. In other words, 80% of diabetics are failing to meet Health Canada’s goals of having an average blood sugar of 8.3 mmo/L or A1c < 7%.
I was diagnosed at 22. I am thankful I didn’t have diabetes in my childhood. After diagnosis, I joined the staff of the local diabetes camp for teens. I was blessed for the next 15 years working with others like me struggle to maintain optimum blood sugar control across a constantly changing life. It wasn’t until the first family camp that I understood the gravity of the emotional tax managing diabetes takes on all of us. I saw parents in tears not knowing the optimum insulin cocktail to keep their child above 4 mmol/L to prevent seizures or worse while sleeping. They were equally worried about not giving enough insulin so that their child didn’t pay the tax of complications caused by high blood sugar.
The big benefit of an insulin pump is it simplifies the delivery of insulin. Most modern pumps use faster acting insulin which only stays in the body for about four hours. The challenges of unwanted long-acting insulin working at the wrong time are mostly mitigated. While far from perfect, only using one kind of insulin makes our lives easier.
The continuous glucose monitor gives us so much more information about what our blood sugar is doing. Rather than data every few hours with a manual fingerstick check, the continuous glucose monitor gives a result every five minutes. In diabetic terms: that’s pure gold.
Those of us in the type 1 community are after the “closed-loop system” where insulin levels are perfectly matched with blood sugar levels so that we have higher outcomes in range requiring less work on our part. A community of developers reverse-engineered the insulin pumps mentioned in your article so that they do just that. Two packages of software, Loop and OpenAPS, read data from the continuous glucose monitor and will speed up or slow down the insulin pump increasing our individual time in range. They reverse engineered the radio protocols – how cool is that!
I run one of these pumps. I am a user of Loop. My A1c (average blood sugar) has fallen not only to Health Canada’s guidelines but to nondiabetic levels. The work these developers have done has made them nothing short of heroes. The open source software community has built a piece of software that outpaces anything commercially available today – especially the Medtronic 670G. Every five minutes Loop checks my blood sugar, the insulin on board, and the rate of change and makes tiny micro adjustments to keep my levels steady, just like an actual pancreas. To learn more about the software I encourage you to read the following two links:
Keep in mind, to date this software has been developed by concerned parents in their spare time frustrated by the lack of progress in commercially available systems. Today’s products don’t interoperate and don’t let data from one system influence the other.
What’s great is that the Loop Team has reverse engineered another pump, the OmniPod. Now diabetics can use a commercially available pump instead of relying on a hard to find 10 to 15 year old pump with a specific version of the firmware.
To make things better, Tidepool, a nonprofit has decided to make an FDA approved version of Loop. They are building on the success we’ve shared is a do-it-yourself community so that we all can have the same standard of care in our diabetes. The FDA has noticed how important this work is and has fast-tracked TidePool in a new FDA precert program (https://www.tidepool.org/blog/tidepool-fda-pre-cert-program-iteration). This work is nothing less than life-changing. Time in range has gone up significantly. Quality of life for the diabetic and confidence in their outlook has gone up. Parents often report in our online group “I can sleep through the night.” Even Medtronic knows that loop is a good thing – they’ve announced a partnership with Tidepool.
As an American, I always enjoy watching The National for your approach to the news. I’d encourage you to dig a bit deeper on this with a follow-up story. This security flaw is changing lives in a real, tangible way. The travesty is not the security flaw but the slow progress of modern medicine. To truly hack my insulin pump, somebody has to be physically close to me (less than a meter or two). Do I worry about it? Not at all. I take much more risk with today’s standard of care using multiple daily injections and a few fingerstick’s throughout the day. I’ll take my automated pancreas which balances my blood sugar every five minutes using micro-doses of insulin.
I’d be curious to learn from your health correspondent on what Health Canada is doing to make this life-changing approach more available to Canadians.
Thank you for your consideration on this topic.