Just after I started using the DIY hybrid closed loop system, OpenAPS, for my type 1 diabetes, a lot of old memories started bubbling to the surface. Memories of my life with diabetes. I guess possibly these were what is referred to as ‘suppressed memories’, but it seems a bit melodramatic to say so.
One of the earliest memories was about my first hypo.
I was in hospital for two weeks for stabilisation after my diabetes was diagnosed. On my own. Apart from my mother’s visits. But she had three other children to manage at home.
In a white gown tied at the back, nil by mouth, for the first few days while I was hooked up to a drip. Then one morning the drip came out and I had my first shot of insulin.
The hypo seemed to come out of nowhere. It was night time on the second or third day of insulin injections and I was 12 years old.
I started shaking and sweating.. My heart pounded in my chest and I was confused. It was like a rug had been pulled out from under me and I felt like I was falling through air.
Was this what I’d been reading about in my “How to Manage Diabetes” book…hypoglycemia?
It was hard to find my voice. I was not used to speaking up. Eventually I called for the nurse. I waited… and waited … and eventually the nurse came. “I think I need to eat some barley sugar” I said. “I think I’m having a hypo.”
The nurse told me to wait. She wanted to clear this with my paediatrician first. This was 1980 so there was no blood glucose meter.
I did what I was told. I waited for what felt like a very long time, shaking and sweating and thinking “I really should be eating some barley sugar.” The nurse couldn’t reach the doctor. The packet of barley sugars my mother had left with me were in a drawer next to me. Eventually the nurse returned and told me I could eat some barley sugar.
Eventually my body calmed and I started thinking clearly again.
I’m planning to trial AndroidAPS in the coming weeks. It’s exciting and intimidating. And it’s made me take stock of what I’ve loved about the iPhone/OpenAPS combination I’ve been using for the past eight months.
Doing things quickly on the go, without too much thought, is the way I want to run my diabetes, and iOS Shortcuts are perfect for this kind of interaction. Just a swipe and a tap or ‘Hey Siri’ to activate them.
Here are the Shortcuts I’ve been using with the DIY hybrid closed loop ‘artificial pancreas’ system, OpenAPS.
See end of this page for examples of how I’ve set these up.
One of the great things about OpenAPS is that you can configure it to run Autotune automatically every night. Autotune iteratively calculates what it thinks your basals, ISF (insulin sensitivity factor) and C:I (carb to insulin ratio) should be, and uses these values in its predictions and dosing. It works best if it has good data. The last thing I feel like doing when I’m having a hypo is entering hypo recovery carbs into the system. So this Shortcut does it for me. It also temporarily increases my BG target to help me recover from the hypo.
If I’m eating a low carb, minimal protein meal like veggie stir fry with tofu (no I’m not vegan!) I still seem to need a boost of insulin. This Shortcut feeds into Nightscout to let the system know to treat me as though I’ve just had 8g carbs.
I love this one. If I notice my BGs have been sitting a bit higher than I’d like them, this will usually bring them into line. My usual BG target is 5.5mmol/L (100mg/dl). This shortcut sets it to approximately 4.5mmol/L (80mg/dl) for two hours. It’s great for stressful mornings at work, mornings when I don’t exercise, insulin resistance due to hormones, and at workshops or conferences where there’s a lot of sitting around. It’s also useful when I’m coming down with a virus or cold and can see the insulin resistance starting. OpenAPS catches up with this decreased sensitivity really quickly, but using a lower BG target for a while helps to keep BGs in range early.
This sets a higher BG target for two hours which stops my BGs going low during exercise. I walk for an hour most mornings and activate this Shortcut as soon as I wake up. It works best for me when I activate it an hour before starting exercise as it prevents or minimises insulin-stacking.
Gets the insulin going before meals (when I remember to use it!) by setting a lower temp BG target (4.4mmol/L, 80mg/dl) for one hour.
A brilliant, quick way to end one of the temp targets I’ve set up. I use it when I can see my BGs have come down quicker than expected after activating the 4.5 for two hours Shortcut or at the end of exercise if my BGs are at the high end of my target range.
Tells the Nightscout portal I’ve had 5g carbs.
These buttons create entries in Nightscout to make keeping track of sensor and pump site changes super easy.
These carb Shortcut buttons, for pre-set amounts, tell Nightscout roughly how many carbs I’m about to eat.
Tapping the darker blue Carbs button opens the screen below for custom carb entry. (Thank you to Jarred Yaw for drawing my attention to this and Scott Leibrand for the screenshots on Twitter)
When using these carb shortcuts I usually just leave OpenAPS to sort out the insulin via high temp basals. Most people using OpenAPS use Supermicroboluses (SMBs) for this but I haven’t enabled this feature yet due to having tiny insulin requirements.
I also like having the option to enter meal boluses through the pump’s bolus wizard, and often use this instead of using the Carb shortcuts. Either entering a bolus for the entire meal if it’s fast-acting carbs, or for a fraction of it up front for other meals, leaving the high temp basals of OpenAPS to do the rest. This mimics square wave or dual wave boluses but is even smarter, as it incorporates responsive carb absorption observations and calculations into its algorithm, including unannounced meals (UAM). When using the pump’s bolus wizard for bolusing, both the carbs and insulin bolused are automatically uploaded to the OpenAPS system.
A few months ago I met a 96 year-old man in my dentist’s waiting room. I told him I had an artificial pancreas.
I was ecstatic – showing my OpenAPS rig to complete strangers at the time, expecting them to be as interested and thrilled as I was about this monumental development. Most people looked a bit puzzled. Some remembered hearing or reading something about type 1 diabetes and proceeded to ask me if I was one of those people who had to give myself injections.
The man in the waiting room was quiet for a long time. He shook his head. He was quiet again. I thought I’d been too forward and maybe what I’d said was unfathomable to him.
Then he told me that a boy in the year behind him at primary school, when he was in year six, had died of diabetes, and a boy the year ahead of him with diabetes had not reached his twenties.
I was shocked. Since my own diagnosis in 1980, I’d assumed the discovery of insulin in 1921 meant that the era of children regularly dying from diabetes was a bygone era, a chapter in ancient medical text books (and developing countries, and America if you don’t have health insurance, but that’s another story).
I did the maths. The man in the dentist’s waiting room was born in 1922, the year that insulin became available for treating type 1 diabetes. He would have been in year six in 1932. So the first boy had died around 10 years after the discovery of insulin and the boy who didn’t make it into his twenties maybe started using insulin in the early 1930s.
It was humbling and profound to realise that in the span of one living human’s life, the world had changed from one in which type 1 diabetes equalled death to one where hybrid closed looping technology had been developed, and a healthy, long life could be the norm.
It also made me wonder what it was like to live with type 1 diabetes in Australia during those early years of insulin. Why did people do so poorly?
I stumbled upon Vicky Bowden’s story of John Cook in Mackay’s Daily Mercury, 10 May 2018. It provided a lot of the answers:
“Even with the advent of insulin the treatment was fraught with danger, as the potency of the drug was variable, leading to complications in many patients. It was also expensive and availability was sometimes patchy.”
According to Lance Macaulay’s article in Australian Biochemist (2002) the high cost of insulin, and issues with availability, led many families to rely on dietary restriction to minimise the amount of insulin required, especially during the Great Depression of the 1930s.
Lance Macaulay describes his own father, Russ, who was diagnosed in 1930 at age three, remaining thin and physically wasted on the restrictive diet of the times, until he visited a new clinic at age 14, was placed on a regular diet and thrived.
John Cook developed diabetes in 1925 at age 13, two years after CSL began producing insulin in Australia.
John followed a strictly controlled and documented diet and measured the sugar in his urine four times a day. He also weighed himself on a daily basis to gauge how well the insulin treatment was working.
When he was fourteen years old, he developed “pain in my side” and despite the local doctor assuring him it was nothing to worry about, he was later taken to hospital by ambulance and remained there for two and a half months.
By the end of his hospital stay, fourteen-year-old John had put on “1/4 pound”. His diaries show that he struggled in hospital with the slow passing of time, and found the days without visitors hard to bear. His father’s diaries note that he was becoming depressed. They brought him home.
His parents embraced natural health practices and became interested in Christian Science, a movement that was growing in popularity at the time. Christian Science founder, Mary Baker Eddy argued in her 1875 book, Science and Health, that “sickness is an allusion that can be corrected by prayer alone.”
John persuaded his mother to take him to see Christian Science practitioners in Brisbane in March 1929. His parents would only agree to the trip if he promised to continue taking his insulin. He agreed, but he wanted to stop.
John Cook had kept a detailed diary from the age of eleven. The entry from 7 March, 1929, indicates that he was told he could not be healed unless he gave up his insulin. According to Vicky Bowden, his diaries note that his insulin doses were gradually reduced over the following weeks.
The last word John wrote in his diary is “insulin”, on 29 March, 1929. The final words in his diary are his mother’s.
John Cook died at 7pm on 31 March 1929 at seventeen years of age, after becoming ill early on the morning of 30 March.
What captured my attention most of all in Vicky Bowden’s Daily Mercury article is the following description of John:
“John spent a lot of time designing new machines and redesigning old ones. His drawing book shows all manner of engines and devices all neatly sketched and labelled in his hand.”
And from one of the eulogies written about him:
“John was a bright, cheery lad and was exceptionally clever, particularly in mechanical lines. Although only very young, he could assemble the parts of motor cars with the greatest ease, and wireless work of the most difficult nature was only a mere detail to him.”
“He could discuss most intricate questions and work with the most learned, and possessed the most genial character of profound meekness.”
John just needed access to the internet, and to be born sixty years later.
I hope one day to visit Greenmount Homestead and look at John’s diagrams. I’m sure you all know what I am looking for…
Sincere thanks to Vicky Bowden, chair of the Friends of Greenmount Homestead, for providing digital photographs and information to me about the life of John Cook.
I started writing this with an upbeat ending in mind. The truth is, it’s a very sad story. It reminds me of the great luck we have to be alive at this point in history. It reminds me to be grateful, every day. And it reminds me of how much is left to do in countries and amongst people who are not as fortunate as we are.
For the first time in history, we have a chance to make type 1 diabetes complications a thing of the past. There is an urgent need to put systems in place now to make sure hybrid closed looping technology is as accessible and affordable as possible.
One major barrier to uptake is the cost of continuous glucose monitoring (CGM).
Here is the story of how one woman, inspired by the pioneers of the #WeAreNotWaiting movement, and driven by her fierce love for her three year old son, captured the hearts and minds of a nation. She gained government support, and helped turn South Korea from a country where children with diabetes were sometimes denied access to kindergarten, and people who purchased CGM supplies from foreign sources faced possible arrest, to one that now provides a 70% CGM subsidy for all with type 1 diabetes. The CGM subsidy came into effect on 1 January 2019.
Will South Korea be the only country to invest so fully in its people with diabetes? What steps can medical device companies, governments, insurance providers, diabetes organisations, and individuals around the world, put in place now to ensure a healthy future for all?
Miyeong Kim’s incredible story
[I have kept this in Miyeong Kim’s own words as much as possible, with only minor editing. From her post to the Facebook Looped group, November 2018. It is re-published here with Miyeong Kim’s permission.
My name is Miyeong Kim, and I am a mother to a boy with type 1 diabetes and the executive director of the Korean Society of Type-1 Diabetes.
In South Korea, there are approximately 40,000 people living with type 1 diabetes and the condition can be diagnosed early in childhood.
At the time my son was diagnosed, Korea was falling behind global standards in diabetes management and the social treatment of people with diabetes. In 2015, several children were denied entrance to preschools. Families were told that blood glucose monitoring and administering insulin injections was too difficult.
We were emboldened and prompted to action by Nightscout’s motto, We are not waiting.
We banded together and called for a revised Childcare Act to protect our children from this discrimination. The revised Childcare Act was successfully passed in January 2016.
In 2014, our group heard that Freestyle Libre had been launched in Europe. Freestyle Libre and Dexcom products were not approved for sale in South Korea, so we felt we had no choice but to buy them from foreign sites for personal use.
We tried our best to communicate to the government that CGMs were life-changing for people with type one diabetes, not only because they were convenient, but also because they significantly lowered the risk of life-threatening complications.
We asked the government to approve importation of CGM and related devices and to sanction their coverage by public health insurance.
I was brought in for investigation seven times in 15 months by the Korean Customs Service and the Ministry of Food and Drug Safety, based on accusations made by an anonymous source that I had violated customs law and the medical appliances act. I avoided penalisation, but the process was incredibly nerve wracking and exhausting.
Even in the face of these difficulties, we could not bring ourselves to stop using CGMs.
Our story was widely publicised and garnered public attention Many people showed their support for and solidarity with our cause.
Our predicament even reached the audience of president Moon Jae-in.
President Moon invited my child and me to a meeting where he promised to reform medical device regulation so that people with type 1 diabetes could reap the benefits of the latest products on the market.
The Medtronic Guardian Connect CGM was approved for use in February 2018, followed by the Dexcom G5 in July 2018. Reforms to the medical appliances law were made, providing a state-sanctioned guideline for individuals to freely purchase foreign-based medical appliances for personal use without fear of prosecution.
[In his speech at the Medical Device Innovation event, President Moon said Miyeong Kim’s story had caused him to reflect on the state of medical device innovation in Korea. He used the case to spearhead reforms to the Korean medical device industry. “We will create an industrial ecosystem that promotes the development of innovative medical technology,” President Moon said. www1.president.go.kr/articles/3881
“We will try to eliminate social prejudice against diabetes patients. It is also necessary to drastically reduce the period of time required for medical devices to enter the market and drastically reduce the barriers to entry.”
As of 1 January of 2019, people with type 1 diabetes in South Korea only pay 30% of the cost for CGM. Public health insurance covers the remaining 70%.
In order to share our journey with you, we thought it might be a good idea to provide an even more detailed chronological account of our activities (below).
It was our honour and privilege to adopt Nightscout’s inspirational model as our guide to success, and we share our story in the hopes of positively contributing, in any way we can, to a community to which we are eternally indebted.
[Thank you to Ben West for bringing Miyeong Kim’s story to my attention. In Ben’s words: “Let us all consider how we can unify our demands for trustworthy, high fidelity therapy that in adapting to our lifestyles allows us to return to the lives we want to pursue with the people and activities we love. Let us make the benefits we discover accessible to as many as possible.” @T1Bionic]
Timeline of events in South Korea
March 2015 – began importing Freestyle Libre
Parents in our group, the Korean Society of Type-1 Diabetes, began buying Freestyle Libre devices from the UK. They were not licensed for sale in the Korea at the time,
December 2015 – began importing Dexcom
Dexcom, similarly, was not licensed, but parents in the group began purchasing them from Czech sites.
January 2016 – Legislation of Childcare Act to protect children with type 1 diabetes
A revised Childcare Act was passed to ensure that children with type-1 diabetes were not discriminated against when competing for entrance into preschools. The act also dictated that permanently employed medical professionals be available in preschool institutions to administer insulin injections to children who need assistance throughout the day.
January-February 2016 – campaigned for, and attended policy hearings pertaining to, the legislation of a revised School Healthcare Act
Our group campaigned for a revised School Healthcare Act that would allow diabetic students in elementary, middle, and high school to receive assistance of the school’s medical professional (i.e. the school nurse) when administering insulin/glucagon injections.
March 2017- charged by the Korean Customs Service
The group was subjected to investigation by the Korean Customs Service for purchasing CGM products from foreign sites without reporting to customs.
I was investigated by prosecutors and by customs for 4 months. I got the verdict that I was not guilty because I had not gained any profits from the activities and because mainstream Korean doctors, the Korean Paediatric Diabetes Association, the Korean Diabetes Association, and about 600 members (Type 1 Diabetes patients and caregivers) pleaded for me.
In the end, the prosecution dropped all charges in July, but the case was widely reported on and grabbed the attention of the public and the government, prompting them to question why we were led to purchase such products from foreign sites in the first place.
August 1, 2017 – A positive response from Dexcom
Once or twice a year, after we started using CGM, we sent a request to Dexcom’s US Headquarters, asking them to launch Dexcom CGM in Korea.
We received negative answers repeatedly due to Korea’s low marketability based on the small population of people here with type 1 diabetes.
However, when we communicated with Dexcom about our experience with the Korean prosecutors for importing Dexcom from overseas, we received a positive answer from Dexcom. The Vice President of Dexcom visited Korea on September 1, 2017, and since then he has visited Korea several times and prepared to launch. As part of the process, we assisted with a Korean diabetes market analysis, and arranged meetings with medical staff.
Finally, on July 31, 2018, one year after our first email to Dexcom, Dexcom was approved in Korea and has been on sale since November 1st, 2018.
November 13, 2017 – Blue House (the Korean presidential residence) announces, ‘Type-1 Diabetic Children Protection Measures’
The Office for Government Policy Coordination released its report, ‘Measures to Protect Type-1 Diabetic Children,’ and officials from the Ministry of Health and Welfare (MHW), the National Health Insurance Service (NHIS), the Ministry of Education (ME), and the Ministry of Food and Drug Safety (MFDS) attended the conference to discuss specific policies.
One discussion centred on expanding the list of ‘insurance covered disposable medical appliances used by type-1 diabetics’ to include CGM sensors, insulin pump syringes, and syringe needles. In addition, the government also sought to provide a comprehensive solution to individuals personally and haphazardly purchasing CGMs from abroad.
December 1, 2017 – charged by the Ministry of Food and Drug Safety (MFDS)
Even after charges levelled against us pertaining to customs violation were dropped, new accusations of medical appliances law violation were made against the group. I was brought in for, and subjected to, further investigations, which led to the case drawing even more media attention, forcing the MFDS to address again the fundamental problem that had led us to purchase CGMs from sites abroad.
March 6, 2018, held press conference in front of the MFDS headquarters
The group held a press conference to publicly denounce the actions of MFDS and appeal for policies centred on patient welfare, rather than punishing patients for attempting to access superior medical appliances unavailable in the country.
March 28, 2018, National Assembly Debate
Representatives of our group attended a National Assembly Debate and requested that the MFDS, MHW, and NHIS work together to streamline the complicated process that individual consumers have to go through in order to purchase medical appliances available only abroad, and further requested that such appliances be covered by national insurance.
The MFDS promised to establish and put forth a straightforward guideline, which was previously near nonexistent, for individuals who wish to purchase foreign appliances, and further to facilitate the importation of appliances high in demand for the convenience of Korean customers.
April 24, 2018 – Conference with the NHIS and the MHS
At the conference, the government announced that people with type 2 diabetes who need insulin injections more than three times a day would be subject to the same insurance coverage as people with type 1 diabetes, with the current standard being KRW 2,500 (US$2.20) per day.
While previously insurance coverage for type 1 diabetes was limited to four items (insulin syringes, injection needles, blood lancet, and blood glucose test strips), the list was amended at the conference to extend coverage to continuous glucose monitoring (CGM) sensors, automatic insulin pumps, and insulin pump needles, covering in total seven subcategories. While there was promise of expansion of coverage, the when, where, and who of the proposed expansion were not clearly decided upon at the time.
May 25, 2018 – Conference with NHIS
It was announced during the conference that CGMs would not be included in the list of disposable appliances for type-1 diabetes and would instead be covered independently so that coverage may be extended to the entire diabetic population.
The decision was based on the NHIS’s survey of the nation’s wider diabetic population, distributed through various patient groups, including our type 1 diabetes patient support group.
May 29, 2018 – Cheongwadae ‘Type-1 Diabetic Children Protection Measures’ Evaluation Meeting
The meeting was held to discuss and evaluate the success of the ‘Type 1 Diabetic Children Protection Measures’ announced by the Office for Government Policy Coordination a year prior. The meeting was attended by officials from the MHW, the MFDS, the Ministry of Education, as well as expert medical personnel and representatives from patient groups. Among the issues evaluated was whether CGM devices were regularly and steadily provided to the diabetic population.
July 29, 2018 – Function to advocate for medical appliance regulation reforms
My child and I were invited to the event where president Moon mentioned our case in his speech calling for a wholesale reform of the current medical appliance regulations in order to prevent cases like ours, involving grievances arising from false or malicious accusations.
August 1, 2018 Onwards
Insulin pump syringes and syringe needles are now included in insurance covered medical expenses (without changes in purchase price/cost) for all people with diabetes.
August 21, 2018 – Insurance coverage of CGM sensors
We attended a conference held to consult patient groups about the insurance coverage of CGM sensors. We discussed the standard cost/price of sensors for the purposes of calculating insurance coverage, percentage of the cost to the individual, and the timeline for policy implementation.
Target population: People with type 1 diabetes
Criteria for diagnosis: consistent with the existing standard of diagnosis of type 1 diabetes (disorder code: E10x, insulin-dependent diabetes)
Coverage standard cost: It is planned to differentiate between CGM and FGM when establishing a standard price for insurance coverage. The following proposal is yet to be finalised. The proposed agenda stipulates setting a standard cost of KRW70,000 (US$62) per one CGM sensor/1 week and KRW70,000 (US$62) per one FGM sensor/2 weeks. According to this proposal, per every 4 weeks, CGM sensors would cost KRW280,000 (US$246.50) while FGM sensors would cost KRW140,000 (US$123.20) for the average patient.
Cost to individual patient: According to the proposed agenda, individuals will bear 30% of the total cost. Patient groups have appealed to limit the cost to individuals to 20%, as any more than that will prove to be a significant burden on the average patient.
Coverage of CGMs and FGMs will be prescribed independently of existing ‘disposable appliances’ prescriptions.
Prescriptions from physicians (general practitioners), paediatricians, and family medicine doctors will be accepted by the NHIS.
Period of time for prescriptions: within 90 days, which is consistent with existing guidelines (If the cost proves too high, then one may present several prescriptions within short time frames to fully take advantage of insurance coverage plan.)
The prescription should be made weekly, according to the actual use rate of each individual.
Approximate timeframe for insurance policy implementation: Between November 2018 and February 2019.
October 10, 2018 – We made a phone inquiry to NHIS about when CGM sensors would be covered by public insurance
We received a reply that the inspect of government offices that was taking place had delayed the National Health Insurance Policy Review, which is now scheduled to take place after November. This would mean that the earliest the policy could be implemented is December 2018.
October 17-21, 2018 – Type 1 Diabetes Awareness Musical ‘A Very Special Gift’ performed
Premiering in 2016, the musical ‘A Very Special Gift’ is a product of collaboration between myself and two other mothers from our group. All of the songs in the musical were composed by Misun Kim, and the screenplay was written by 이수who is also a cast member. Our intention was to raise public awareness of type 1 diabetes through a family-friendly, informative, and entertaining musical. The musical has amassed approximately 10,000 viewers so far.
We as a group of patients and family members worked hard for years in order to bring about a world more accepting and tolerant of people with diabetes and their struggles. We encountered many different difficulties, but fortunately such hardships proved also to be valuable opportunities to raise awareness among the general public, helping us achieve our goals in the end.
Our story has been written about 300 times in the news over the past two years. It has been introduced on radio and in a television lecture program.
Our initiative and objectives were borne out of the same spirit embodied in Nightscout’s memorable call to arms: ‘We are not waiting.’
We extend our sincerest gratitude to Nightscout for inspiring us to act, and we would like to offer our help and support to anywhere we may be of assistance. Please do not hesitate to contact us.
News articles (just some of the over 300 published)
I was ecstatic to learn that Dana Lewis, who designed the OpenAPS system with Scott Leibrand, was going to be a keynote speaker at the Australian Health Informatics conference #HIC18 in Sydney.
I was very fortunate in being able to meet her and Scott, and the brilliant group of Sydney loopers, at the Opera House bar the day before the conference, and to sit in on her talk.
Patient as innovator
It was a breath of fresh air to hear Dana Lewis talk about patients as experts and innovators.
In her own words:
“We get a lot of pushback. We are told ‘you are not a clinician, you are not an IT expert, you are not an engineer. You are not a this or a that’. We often focus on the roles. Do your role, don’t cross the lines.”
“And as a patient that’s really frustrating because as a patient we get that we are not professionally working in this space being paid to do this but this doesn’t mean that we’re not engaging and designing and developing and doing research and science.
We have to. This is making our lives better. Our other choice is to sit there and do nothing and suffer and wait for one day when something will be better.”
Patient as expert
“The patient syndrome trap is hugely prevalent everywhere around the world in healthcare. We assume patients know little tiny bits of information and healthcare providers and everyone else knows way more. But that’s wrong.
The reality is that yes health care providers, IT, medical device companies, pharma and the government know a lot but we patients know so much more.
The difference is often in the process, the priorities.
Instead of focusing on the overlap and talking about whose role is doing what, the best partnerships, the best healthcare is going to happen, we get the best of all worlds when we all work together.”
The Data behind DIY Diabetes—Opportunities for Collaboration and Ongoing Research
Other patients who are not waiting
Mike Morris has written a brilliant post on the Health Intersections blog about how he got cancer and decided he also was not waiting. He created his own integrated digital health dashboard. This meant his data held in various types of health records could be consolidated and available in near real-time so that he could work with his oncologist to course-correct in the middle of chemo cycles rather than going through whole chemo cycles and then waiting for a scan. He talks about having ‘personalised medicine’ rather than ‘a life of chemo’ and about treatments based on predictive outcomes and trends. Sound familiar?
His story and his efforts to create a better system remind me so much of Nightscout and the open source artificial pancreas community #WeAreNotWaiting. His diagram of the protocol treatment chemo cycle showing the 10 minute doctor’s visits followed by the expanse of time between visits where there is no monitoring reminded me a lot of traditional type one diabetes healthcare. It is very exciting to see this changing.
Tidepool: step right up!
Very interesting news that Tidepool, an open data not-for-profit made up of people who either have type one diabetes or are related to someone who has type 1 diabetes, is to deliver an officially approved, FDA regulated app based on the DIY tech of Loop. The fact that Katie DiSimone and Pete Schwamb have joined the Tidepool team is fascinating too. Patients as experts and innovators? Absolutely.
The first pump expected to work with the Tidepool Loop app will be Omnipod, which should be super appealing to a historically difficult to reach group – teenagers. Other pumps will follow.
And what about my rant in my initial post about interoperability?
As Howard Look of Tidepool says “this pushes everyone forward, to thinking about interoperability and interchangeability, and that makes for a better world for people with diabetes.” What a sigh of relief after all these years. It’s going to be very interesting to watch the diabetes tech space over the coming years.
There was a lot of talk about co-designing diabetes health systems with patients at #HIC18 and I was pleased to see a session on consumer co-design scheduled at the Australian Diabetes Congress (August 22-24) in Adelaide.
I was not able to attend the conference but I’m sure the main messages were summed up by this slide:
User experience design for medical devices
I was even more thrilled a few months ago to see BigfootBiomedical advertising for user experience professionals to join its company. Doing proper ethnographic/observational studies of people actually using medical devices is imperative and I get the feeling it has been overlooked by some companies in the past.
With more vendors coming into the market with their versions of hybrid closed loop technology for diabetes in the imminent future, having good usability and the least possible diabetes burden may well determine which companies survive and thrive in the new marketplace.
It will also be interesting to see how companies that choose to embrace JDRF’s call for open protocols fare in the marketplace too. Interoperability, open source, community… perhaps a whole new health ecosystem? Who knows?
One thing for sure is, from my perspective, it’s going to be fascinating.
Now, back to the ADC co-design workshop. Other presenters in this workshop include:
Another brilliant presentation at the Australian Diabetes Congress was Renza Scibilia, Cheryl Steele and David Burren’s talk on using DIY hybrid closed loop systems.
Renza uses Loop and talks about what this tech has meant to her, David uses Android APS and gives an overview of the technology and Cheryl uses OpenAPS and shows how Nightscout reports can be used by health care professionals. At the end of the presentation, CEO of Diabetes Australia, Greg Johnson, launches the Diabetes Australia position statement on DIY looping.
Three months prior to looping › first three months of looping
Predicted HbA1C 8.2 › 6.8
Time in range of 43% › 70% (76% in Nightscout)
Average glucose 10.5 › 8.2 (8.3 in Nightscout)
Standard deviation 3.6 › 2.6
Lows 1% › 1%
Dexcom Clarity report
So far so good
For many people a HbA1C of 6.8 would still be troublingly high. For me it is a major breakthrough, especially with my time in range increasing from 43% to 76%.
As Neil McLagan, a T1D athlete who’s not looping but has found stability on a low carb diet, said to me, “Before it was like, I was always going through the zone. I was high going through the zone on my way down or low going through the zone on the way up. Now, I’m always in the zone and it’s a good feeling.”
For me OpenAPS is a self-correcting system in that it gives me enough of a feeling of control (not just BG control) that I have the confidence, the breathing space, and hopefully the tools, to make further changes to keep my blood sugars in range even more of the time by adjusting my settings and modifying some of my diabetes behaviours.
It’s like another new looper on the Facebook Looped group said, “I’m ten fold more motivated now.”
Due to the instability of my blood sugar levels prior to looping and my high insulin sensitivity, a lot of my diabetes management over the years has involved hypo-avoidance strategies. Having a system that helps me head off hypos by adjusting insulin delivery to match BG data every five minutes, and a CGM that gives accurate warning of hypos means I can surf closer to the ideal blood sugar range without freaking out.
It is very motivating seeing results, after so many years of putting in effort for little return.
In fact five days after posting the three month results above I checked my reports again and found my predicted HbA1C had decreased to 6.3 with an average BG of 7.5, standard deviation 2.2 and 84% of time in range over the past two weeks. So it’s very encouraging.
Compare that with this. The same record for the three months before I starting using OpenAPS
Thank you to everyone who offers their support and knowledge for this DIY technology on social media, blogs and gitter. It has been mind-blowing to find such a savvy and supportive community after all these years.
And once again, I will always be grateful to the pioneers who said #WeAreNotWaiting and found a way to make it happen. The sheer dedication and years of hard work involved are staggering to contemplate.
I’m planning to keep this site updated with the strategies I’ve tried and the things that have worked for me. Everyone’s diabetes is different, this is no walk in the park, and I realise I have been lucky to have a very supportive and technically knowledgeable partner, but by sharing my experiences I hope others can learn from them too.
Hold on a minute… it gets better... One week later …
10 September 2018
The last week’s predicted HbA1C is:
6.0 with 1.2% of CGM readings less than 4mmol/L, 94.2% time in range and down to 1.6% standard deviation.
Or if we change the hypo range to being less than 3.9, we get 0.8% readings less than 3.9
0.1% of readings less than 3.0mmol/L with 95.3% time in range
… Very happy camper… you can see why this is motivating!