Author: Linxi Mytkolli

By Krista Lamb

The cost of treating foot ulcers in people with diabetes continues to be incredibly high. A new study from Diabetes Action Canada researchers Drs. Mohammed Al-Omran and Charles de Mestral, shows that the cost for treatment of diabetic foot ulcers in Toronto hospitals is more than double that of the top five most costly conditions.

Part of this, the team explains, is that care for someone with a diabetic foot ulcer is fragmented. “Unfortunately, there’s no coordinated multi-disciplinary care for this existing province-wide in Ontario,” explains Al-Omran. “As a result, you expect the cost to be high, plus the care of these patients will be compromised. This is the reason we conducted this study.”

The paper, “The economic burden of inpatient diabetic foot ulcers in Toronto, Canada,” was published in the journal, Vascular, and looked at the cost of treating diabetic foot ulcers at eight Toronto hospitals. The team compared people who were admitted with diabetic foot ulcer complications against those admitted with different diabetes complications. They found that the cost for treating foot ulcers related to diabetes was almost $23,000/patient. A stroke, by comparison, costs about $10,000/patient to treat. If a patient experiencing a foot ulcer needed an amputation, the cost skyrocketed to almost $49,000.

These costs, Al-Omran explains are driven by the length of hospital stay and the rate of readmission. These are issues, he says that are made worse because of fragmented care and the lack of a clear treatment pathway.

Al-Omran and other researchers from Diabetes Action Canada have now developed a pilot program that is investigating how by streamlining care and providing a clear plan for treatment, these costs can be lowered and the patient will receive better and more consistent care. The program is currently running at St. Michael’s Hospital in Toronto with more than 100 patients registered.

The pilot, which provides a complete end-to-end plan involving a team of vascular surgeons, chiropodists, internists and others, is already starting to see promising results. Al-Omran has seen the cost of care dip substantially for those who are enrolled in the study, as the consistent and specialized care reduces the time in hospital and improves the overall results for patients.

Al-Omran and his team are doing further studies looking at the costs of diabetic foot ulcers across Canada in the hopes that this will help encourage policy makers to implement changes that will provide better results for patients, as well as reduced costs. Al-Omran also wants to see more prevention programming.

Amputation has been found to be the most feared complication of diabetes—more so than death or blindness—and after more than 20 years of working in this field Al-Omran knows that preventive care can have an enormous impact on avoiding this outcome.

“We know that 85% of people with a diabetic foot ulcer can be prevented from having amputation with very simple screening and interventions, like special foot care and footwear, frequent visits to their primary care providers, and access to a multi-disciplinary team for high-risk diabetic foot ulcers,” he says. He hopes this research will help improve access to these preventive strategies and decrease the number of foot ulcers requiring intervention or amputation.

Learn how Diabetes Action Canada is helping to prevent lower limb amputations

Read the research paper

Exercise is important for people living with type 1 diabetes (T1D), yet only one-third of people with T1D meet the minimum recommendations for regular exercise to achieve health benefits. A research team led by Diabetes Action Canada researcher Dr. Jon McGavock and his trainee Nika Klaprat, wanted to learn what patient-engagement practices had been used in exercise-based randomized trials in type 1 diabetes, and if they aligned with what T1D stakeholders considered the top 10 priorities for exercise research.

The team first looked at all the relevant research on T1D and exercise that met their criteria and determined that patient engagement methods have not been historically used to inform exercise-based interventions. After learning this, they developed a national survey, a steering committee and a one-day workshop to focus on having a diverse group of stakeholders in the T1D community (patients, caregivers, and healthcare providers from a wide range of backgrounds) identify their priority research questions about exercise and health. These findings provide a patient-centred rationale for designing future randomized trials of exercise interventions that have meaning for those living with T1D.

Their paper, Filling gaps in type 1 diabetes and exercise research: A scoping review and priority-setting project, was recently published in the journal BMJ Open Diabetes Research & Care. The paper is open access and available to all.

COVID-19 has been on top of mind for nearly everyone across the globe. With many reading daily reports on the spread of the virus and the potential impact on those with compromised immune systems, we decided to reach out to our Patient Partners to respond to their questions and concerns regarding your own risks as someone living with diabetes and with other chronic diseases.

During four video teleconferences between April 8^th – April 15^th, 2020 our Patient Partners had an opportunity to connect with leading experts in Canada in diabetes research discussing both type 1 and type 2 diabetes in both French and English. From these discussions we have compiled the following frequently asked questions (FAQs) to make available to all members of our research Network.  The information provided reflects what we know now about the novel coronavirus, we expect that with new information emerging there will be additional questions and we will endeavour to add and update the information provided as it becomes available.

Also, for your reference we have put together a COVID-19 resource page with information from our partners discussing diabetes and COVID-19.

Why are we required to stay at home?

Although we are still learning about the novel coronavirus we do know the virus is primarily spread by person to person contact. Transmission is through droplet spread from infected individuals coming into contact with the mucous membranes of the nose, mouth, throat and eyes of others. These droplets can be produced when someone coughs, sneezes, speaks, and breathes. If you pass through an area where droplets have been created (less that 6 feet from the person spreading the droplets), you could get infected. Crowded rooms with poor circulation increase the chance of getting infected.

Non-essential workers have been asked to stay at home, because you cannot catch the virus unless you are exposed to someone who is infected with the virus. These droplets can settle on objects, so if you do need to leave your home carry sanitizer with you and use it after touching objects, wash your hands with soap for 20 seconds immediately upon returning and take care NOT to touch your face. When you are out, stay at least 6 feet away from people. Some people do take the extra measure of washing the food products they purchase and disinfecting the surface of packages they receive. Although, the probability of getting infected by touching foods is low, one may wish to do so if you would like to be extra cautious.

Is it more dangerous for me as someone living with diabetes to leave my home?

A major risk factor for poor outcomes with COVID-19 is age (over age 70 and to some extent over age 60). Other risk factors, not for catching the virus but for doing poorly if you get infected, may include diabetes, but quite clearly centre on heart disease, kidney disease, high blood pressure and a suppressed immune system, for example from immunosuppressant medication.

Although health authorities have emphasized the risk of poor outcomes among people with diabetes who develop COVID-19,  having diabetes does not necessarily mean you are more susceptible to infection from the coronavirus or poor outcomes. There are theories that individuals living with diabetes are at a greater risk of any viral infection, not just the coronavirus, with increased or highly variable blood sugar levels, but this is not confirmed. Secondly, emerging data about the coronavirus has shown that diabetes alone does not seem to increase the risk of poor outcomes among those with COVID-19, but diabetes in combination with the other conditions (such as advanced heart disease or kidney disease) can impact health outcomes. Current data tells us that those with diabetes without these other complications have the same degree of poor outcomes as those without diabetes.

Is there any data suggesting that those living with T1D vs T2D have a different response to the virus?

We are still learning about this virus, but there is currently no definitive evidence that those living with type 1 vs type 2 diabetes respond differently if infected with COVID-19.  Generally, people with type 1 diabetes are younger so may fair better whereas those living with type 2 diabetes, who are generally older and may have other conditions impacting their ability to fight the infection.  People with pre-existing conditions, like heart disease, lung disease and kidney disease have a harder time recovering from the illness. The association of diabetes and bad outcomes with COVID-19 may be more about having diabetes plus other conditions and not about just having diabetes, but we are still learning about this illness.

Why is there the need to quarantine for 14 days if you have been travelling or exposed to someone who has been diagnosed as having COVID-19?

The coronavirus can jump easily from person to person. We have learned that a quarter of people (and perhaps more) who carry the virus show no symptoms – often younger people. For the virus to no longer be infectious in individuals who are ‘silent carriers’ can take up to 14 days and in rare cases even longer. Although these individuals display no symptoms, they can infect others who may develop symptomatic infection.

Individuals who have been infected by the virus usually show symptoms in 3 to 5 days, but in some it can take up to 14 days to display symptoms.  During the time between infection and symptoms emerging, individuals can spread the virus to others.  By staying away from others we are fulfilling our civic duty not to overload the healthcare system and infect hospital and essential workers.  Since you can never be sure about how others are practicing social distancing and/or isolation, it is highly recommended not to interact with anyone face-to-face as they may have likely been interacting with others when shopping, or leaving the house.

As an essential worker living with diabetes and caring for others with vulnerable conditions, am I putting my family at risk?

If your work place has installed the proper safe guards and you have access to personal protective equipment, sanitizer and areas to regularly wash your hands you should be protected. If your diabetes is in good control, you are healthy and below the age of 70, public health guidelines say it is safe to work. Older individuals (>70 years old) with diabetes and other illnesses should be more cautious and remain isolated with their immediate family members for now. These individuals are at higher risk of poor outcomes from the virus and it is best to stay at home.

Should I wear a mask when I leave the house?

It is recommended by public health officials to wear a face covering when you leave your home and when social distancing is a challenge. Face coverings, with the exception of certified N95 masks, will not stop you from breathing in the virus if it is airborne, what it will do will keep droplets that you may create from becoming airborne, therefore protecting others from you.  This means that if you are a carrier of the virus, and you are unaware of the infection, a face covering will protect others from you. For face coverings to be truly effective they must be worn properly, washed after each use (if reusable) and face touching should be avoided.  A risk to using face coverings is it may give the wearer a false sense of security and regular social distancing measures may not be taken. Meticulous hand hygiene is still the best defense against contracting COVID-19.

If I prick my finger to take my blood sugar, will the microabrasions on my fingers increase my chances of contracting the virus?

The novel coronavirus is a respiratory virus that latches onto mucous membranes as its route of entry into the body and not, micro skin abrasions. Don’t lick your finger after a finger prick.

Why are we not testing everyone for a COVID-19 infection if so many don’t exhibit symptoms?

At this time, our healthcare system does not have the capacity to test everyone for the novel coronavirus.  It is hard to prepare for a pandemic when there is no immediate threat as governments and societies have to decide where to allocate resources.   Before December 2019, there was no immediate threat worldwide of this or any other virus becoming such an issue, therefore stockpiling health resources was not considered necessary.  In retrospect this was a mistake that has cost lives and will hopefully not be repeated. Countries are more prepared for military catastrophes than they are for health catastrophes, as there is more ability to predict these threats. Post-pandemic this will hopefully change.

If so many people carry the virus, but have no symptoms what about testing for immunity or antibodies for the virus?

When you get tested for COVID-19, it is a nasal/throat swab to test for the presence of RNA released from the virus.  Researchers are now developing tests for antibodies that develop once a person has been infected with the virus. Since so much is unknown about the virus we are not sure how much antibody you need to be considered immune, whether immunity is long-term, or whether recovery from virus makes you immune against a second infection. More clinical research is required to answer these important questions. It is believed that antibody testing will be one solution to get the economy back up and running, but this is not ready yet to be deployed at a population level.

When can we expect a vaccine against the novel coronavirus?

Vaccines are very hard to produce and need time to be tested for safety and efficacy, before being given to diverse populations.  While we wait for the vaccine development, we are hoping for some sort of herd immunity, which means that as more and more people become immune naturally (through previous exposure or infection), the virus will not have the same impact, reducing the number of people who exhibit symptoms, and preventing our health care system from becoming overrun.

Is there a possible insulin shortage in Canada?

The Canadian supply of insulin is good, but some distribution challenges have occurred. Production is going well and supply is not a worry, especially with the decline of cross-border purchasing of insulin from the USA. It is not necessary to stockpile insulin, as hoarding could impact others from getting their supply of this life-saving medication. Other medications (not insulin) used in the treatment of diabetes have seen recent shortages, but this is not due to COVID-19, but other health and regulatory concerns.

Should I get my routine labs done during the pandemic?

During the pandemic, many Endocrinologists are conducting telephone and video appointments rather than in person appointments. To prepare for these appointments many physicians are asking for the health data, like CGM reports, foot self-exams, etc., in advance.  In many cases, lab work is not urgent, but it is best to follow the advice of your physician before deciding not do routine blood work.

The sudden COVID pandemic has been a dramatic disruption for all members of Diabetes Action Canada. For persons living with diabetes, the change in access to health care has magnified the challenges already in existence. For our health care professionals engaged in clinical research, many have experienced re-deployment to support hospital and other service needs.  Our clinical trials that require face-to-face interaction have been temporarily stopped, although some have been able to adopt virtual communication for data collection and analysis. But for our digital health researchers the pace has increased considerably with the rapid offerings of new research funding focused on COVID-related urgent clinical questions.

We are fortunate to have among our investigators and collaborators some of Canada’s foremost primary care and population health researchers. They have turned their attention to using both their skills and provincial diabetes-related health data sources to design studies that focus on how persons with diabetes are being affected by the COVID pandemic challenge. Jean-Pierre Després and colleagues in Quebec City are analyzing the psycho-social impact on persons with chronic conditions including diabetes. Michelle Greiver in Toronto is using primary care electronic medical record data to identify those individuals with diabetes at greatest risk for adverse health outcomes. Valeria Rac is examining the change to virtual care in both the hospital and community setting to find out how health outcomes, patient and health professional experiences have been affected.

Our SPOR Network is demonstrating adaptation and flexibility in the face of extreme challenge. In addition, the novel research conducted during the COVID crisis will generate important new evidence about gaps in our health system and direct our planning for future patient-oriented studies to fulfill our mission of improving health outcomes for Canadians living with diabetes.

By Krista Lamb

Diabetes Action Canada is pleased to welcome a new Patient Partner to our team. Nova Scotia’s Kylie Peacock has lived with T1D for more than 20 years and has been an advocate and a supportive voice in the community, in particular in the area of diabetes and mental health. She has joined the Research Governance Committee and will be a Patient Representative for the National Diabetes Repository.

Peacock is pleased to be able to share her experience to help shape research and improve outcomes for the T1D community “Living with type 1 diabetes shaped my childhood and continues to impact my everyday life as an adult,” she says. “These past and current lived experiences drive my passion for patient-centred design and care in every aspect of the healthcare system, and motivate me to advocate for inclusion of the patient voice/lived experience in healthcare system design, healthcare research and innovation, and overall healthcare improvement. My experiences of living with type 1 diabetes and having to navigate the healthcare system have been difficult; positive and negative at times, but every single interaction with the system has encouraged me to advocate for better healthcare design, implementation, and care for all.” 

During university, Peacock met Dr. Michael Vallis, a leading expert in diabetes distress. Through him, she learned about the importance of patients taking an active role in research, and she began not only to share her story, but to contribute to his research. She sees her new role with Diabetes Action Canada as a continuation of this work. “I hope that my experience of living with type 1 diabetes can inform the type of research questions diabetes researchers ask and the studies they design. I hope to show others that there are faces and names behind the numbers and that our stories of living with diabetes are extremely important to listen to,” she says.

Conrad Pow, a Senior Project Manager at Diabetes Action Canada, is extremely pleased to have Peacock on board, given the role she has played in his own experiences with T1D. “I was at a primary care conference in Chicago in 2018 and then went straight to a patient-focused conference in Ottawa. While there I saw a familiar face from Chicago stand up and talk about her experiences living with type 1 diabetes,” he says. “Kylie’s candidness and openness struck me, as just a few weeks earlier my four-year-old daughter had been diagnosed with T1D. Kylie and I started talking, and before we knew it – a friendship was formed. She helped me navigate my daughter’s new diagnosis and has been a great support. Kylie was inspired by Diabetes Action Canada’s platform on involving patients in research and giving them oversight in how data is used.  She expressed interest in getting more involved and now I am happy to have her as part of the team.”

Diabetes Action Canada has a wide range of Patient Partners who inform all areas of the work being done by the organization. Peacock hopes even more people living with diabetes will consider taking part in order to ensure diverse voices and experiences are represented. “Being a Patient Partner is extremely rewarding. Not only do I have the opportunity to contribute to meaningful and impactful research, but I have the opportunity to build important relationships with other patient partners, staff, and researchers,” she says.

Interested in becoming a Patient Partner? Learn more here.

By Krista Lamb

A recent study by Diabetes Action Canada researcher and recipient of the 2019-21 postdoctoral fellowship award, Dr. Ruth Ndjaboue, focuses on the expertise of those most closely involved in the diabetes community – persons living with diabetes. Aimed at helping health professionals and those living with or affected by the disease better understand how to improve self-management and care, Ndjaboue had some surprising results.

“For me as a scientist new to diabetes research, I wondered if people might point out what can be done technically for improving medical care or treatment,” she says. “But most of the people were more interested in general humanistic concerns, such as having respectful communication and people paying attention to what matters to them,” she says.

This is reflected throughout the results. The individuals who were interviewed talked less about wanting more access or improved treatments, and instead focused on the ways in which their health providers understood and acknowledged the impact diabetes has on their lives.

For those from Indigenous communities or ethnic minorities, there was an even larger focus on communication and understanding. While the words “colonization” may not have been spoken Ndjaboue felt the implications where there.  “So many people said things like, “People need to know that there’s a social reason why our people, Indigenous people, have diabetes”. So, I think they were pointing to colonialism, even if the word was not used,” she says, noting that the Indigenous community members in her sample were more likely to highlight cultural safety as necessary in care.

This was an important finding for Ndjaboue. “When we are looking for ways to improve healthcare for a minority, and we have people bringing up the problem of discrimination and the problem of disrespecting care because of the way they are or because of the way they look, or any other stereotypes, it means that this is what matters the most to them. Maybe much more so than the biological aspects and the physical things,” she says.

The findings from the interviews with those who live with diabetes have been compiled into a number of considerations for healthcare professionals and for those living with this condition, which will be available soon. The recommendations focus on elements of communication such as empathy, and respect, as well as acknowledgement of the feelings and emotions that come with diabetes, and a need to provide care that is positive, supportive and engaged.

“Pay attention to the emotions of patients and caregivers,” Ndjaboue suggests to health providers. “If those living with diabetes were to comment, they will certainly say: try not to tell people only what is bad, and have a positive attitude towards diabetes to show that it’s possible to have a good life while you are managing your diabetes, it’s not always bad.”

Read the paper now. 

Like all organizations, Diabetes Action Canada has felt the impact of the current COVID-19 pandemic. Many of our team members have seen their roles adapt or change during this time. Please read our recent update to learn more about how we are adapting to this new normal. 

With so much information about the coronavirus and COVID-19 circulating, we wanted to share some of the best information currently available to help those living with diabetes manage during this challenging time.

In April, Diabetes Action Canada held an open forum where our Patient Partners could ask their questions about COVID-19 to a number of leading experts in the diabetes field. We have created a detailed FAQ based on these discussions.

The resources below come from our partners, who are working with leading experts to answer your questions and manage your concerns.

This year, more than ever, a flu shot is important. Here are some resources you might find helpful:

From the Government of Canada

From the Government of Ontario

Diabetes Canada Clinical Practice Guidelines on Diabetes and the Flu Shot

And more resources on diabetes and COVID-19:

Managing type 2 diabetes during COVID-19: a guide for primary care providers.

Diabetes Action Canada has joined organizations around the world in a simple goal: tap into the power of the global diabetes community to save lives. Learn more about this initiative and find resources at CoronavirusDiabetes.org.

Diabetes Canada has a full section on their website dedicated to answering frequently asked questions about diabetes and COVID-19, as well as providing useful links and resources: Diabetes Canada – COVID-19 Resource Centre

JDRF Canada also has a dedicated section of their website specifically for those living with type 1 diabetes: JDRF – Coronavirus and Type 1 Diabetes – What You Need to Know.

The JDRF site includes information from endocrinologists and experts, as well as links to other resources, including this helpful video by endocrinologist Dr. Anne Peters, which has been posted by Beyond Type 1. 

For parents of children with type 1 diabetes, the Canadian Paediatric Society has put together a resource that looks at issues such as DKA risk, and answers many questions about COVID-19 and your child.

Hamilton Health Sciences and McMaster University have also created a COVID-19 resource for children and adolescents with type 1 diabetes.

The BETTER project brings together patient-partners who live with type 1 diabetes, parents of children with type 1 diabetes, researchers, health professionals and decision-makers who are already involved and who want to advance research to improve clinical practices, treatments, and quality of life for people who live with type 1 diabetes. They have a wealth of information on their website about type 1 diabetes and COVID-19.

Our colleagues at Can-Solve CKD Network have posted a list of useful resources for those who are living with kidney disease or renal conditions, which you can access on their website.

For some people with diabetes or their caregivers, the COVID-19 pandemic has meant managing wound care from home. To better support this, Wounds Canada has provided resources on how to safely change dressings.

The American Diabetes Association also has information available about diabetes and COVID-19, including a feed featuring relevant research papers.

Beyond Type 1 is an American organization, so not all of the information on their COVID-19 resource pages will be relevant to Canadians. However, they have a wealth of excellent resources you may find helpful or interesting. Their overview page is a good option for information on a number of topics.

The team at UHN has developed a page where you can find the latest scientific findings and accurate information on COVID-19. This page is aimed at healthcare professionals and also includes some useful tips for  self-care.

Additional information on COVID-19 can be found on these websites:

• The World Health Organization (WHO)
• Government of Canada – COVID 19

By Krista Lamb

Some people with type 1 diabetes aren’t waiting for treatments to catch up to their needs—they’re taking matters, and technology, into their own hands.

*DIY closed loop technologies have not been approved by Health Canada. Please consult your endocrinologist or diabetes care team before making any changes to your treatment plan. Diabetes Action Canada does not endorse non approved therapies or devices.  This article is for information purposes only. 

Diabetes Action Canada’s patient-oriented research group focused on Type 1 Diabetes is seeking to ensure the patient voice is directing research priorities, to increase the impact of diabetes research, and accelerate the translation of diabetes research to clinical practice to improve the lives of people living with T1D across Canada irrespective of where they live. The DIY loop / #wearenotwaiting movement highlights both the impact that persons living with diabetes can have on improving their lives, and their frustration with the slow pace of translational research. 

While Diabetes Action Canada is committed to bringing the patient voice to research conducted in many academic institutions across the country, it does not endorse or promote the use of DIY systems, as they are unregulated by Health Canada and academic research in the area has not shown a definitive benefit. The following is a story driven by the passion of our Patient Partners, and we hope it will inspire further investigation in this area of type 1 diabetes research.*

Pina Barbieri had started to feel like an omnipresent voice in the background of her daughter’s life—and she didn’t like it. When Laura was diagnosed with type 1 diabetes, Barbieri opted to remain a stay-at-home mom a few extra years to help her daughter manage.

While they had moved on from the “archaic” glucometers that had shocked Barbieri when she was handed one upon Laura’s diagnosis and were using a pump and continuous glucose monitor (CGM), Barbieri was still basically monitoring her daughter’s blood sugar from afar. If she saw on her watch that Laura was going low, she called the school to request that her daughter make an adjustment, or she’d send a message directly. “She’d get these text messages all day long,” says Barbieri. “It leads to burnout if I’m constantly giving her commands. And that’s what it is, it’s commands, ‘change your basal, change your basal, change your basal…’”

All of this oversight was part of their lives for years until they discovered a do-it-yourself (DIY) option that allowed patients and families to take control of their diabetes. A growing number of people with type 1 diabetes have decided to try closed loop systems, where a CGM and insulin pump are set up to talk to each other and provide a semi- automated insulin delivery system. While there are now a limited number of approved hybrid closed loop systems available in Canada, many patients are instead using existing pumps and technologies to create their own homemade system. An app called Loop is at the heart of these DIY versions and, for many, this unapproved underground technology has been transformative. “Loop came along and all of that was gone,” says Barbieri of the constant messages to her daughter. “Loop came and it was all quiet.”

Loop was designed by those who, like Barbieri and her friend Kate Farnsworth, were exhausted by the process of managing their own or their children’s diabetes. They were buoyed by the advent of CGM and insulin pumps, but frustrated by how slowly a fully automated process was taking to get to market. Farnsworth, who runs the popular Looped Facebook group, is at the heart of the Canadian movement. She and Barbieri learned about the DIY process while at a conference in California more than three years ago and the pair had ordered the needed hardware before they even left the state. Farnsworth followed the online instructions and quickly had a workable system for her daughter, Sydney.

For Farnsworth and Sydney, it has been life-changing. It allows Sydney to be a normal teen—she pulls out her phone to note her carbohydrate intake at meals or adjust the system settings, but since teens are on their phones all the time, it doesn’t seem unusual to anyone. While there are limiting factors, including the not insignificant fact that only specific pumps can be used with the Loop app, many of which are no longer being manufactured, for some, the initial complications are well worth it.

Once you have the necessary parts and have figured out how to set up the Loop app or another open source version of the code on your cell phone you need to follow the instructions available online to set up the system—Farnsworth likens it to following a recipe—then make the appropriate adjustments as you adapt to the automated system. When it works properly, it can remove the need for much of the significant user input most current systems require. The CGM reports your blood sugar levels to the app, which then tells the pump to make the appropriate adjustments to insulin delivery. The wearer still needs to tell the system how much they are eating and bolus as needed, but much of the ongoing work of managing blood sugar levels is automated.

These systems are, of course, DIY. There is no Health Canada oversight to regulate their use and no company providing customer service. Those who have turned to a DIY closed loop must rely on people like Farnsworth and the thousands of others on her Facebook group if they run into issues.

Dr. Bruce Perkins, an endocrinologist from Toronto’s Mount Sinai Hospital who lives with type 1 diabetes, understands the frustration that has led many to start building their own automated insulin delivery systems. In his practice, he sees patients who are using both closed loop systems that are regulated and those using do-it-yourself systems. “They can all be glitchy, technologically,” he says. “Whether it’s an approved system or not, they all require some work and troubleshooting on the patient’s part. Just because a system’s approved doesn’t mean it’s perfect or that a do-it-yourself system is imperfect.”

As an endocrinologist, Perkins likes the comfort level that comes with knowing a patient with a sensor issue or a system failure can call a 1-800 number or contact the company who manufactured the system for help. However, he is open with his patients about the DIY alternatives and supportive of those who want to try them. “I think that people should know all their options,” he says. “Everyone takes on their diabetes management differently depending on how they were educated about diabetes or their own diabetes experiences.”

Before someone tries a DIY system, though, he offers a few things to consider. Talk to your diabetes care team, be sure you have access to the needed equipment, that you feel confident in understanding the instructions, which can be complicated, and that you know what to do if the system doesn’t work properly. “Not everyone can take on a project like this,” he says, and it’s perfectly alright if it’s not the right solution for you.

That was the case for British Columbia mom Stacey Chipka. When her son turned 18, she thought a DIY closed loop system would be a good option, as she moved away from playing an active role in managing his diabetes. Chipka found it fairly easy to set up the system herself and she was incredibly impressed with the work citizen scientists had done in terms of making the information available and easy-to-follow, but for her son it just wasn’t the right fit.

The DIY system they used required an iPhone, which meant her son, an Andriod user, had to carry a second phone as well as additional technology—all of which required separate chargers. He also found the frequent updates and need to troubleshoot various issues unrealistic for his lifestyle. “It just became too cumbersome and too much to worry about and to have to think about. What I was hoping would take some of the pressure and load off of him actually ended up being the exact opposite,” Chipka says. When one of the components stopped working, her son told his parents not to buy another one. Chipka thinks that in the future, when he’s older and the technology is more streamlined, he would try another closed loop system but for now it’s off the table.

Dr. Peter Senior, an endocrinologist at the Alberta Diabetes Institute, has taken a proactive approach in recommending DIY systems to some patients who he feels have no other options and might benefit. Many in his practice are there because of a failed islet transplant and are managing severe hypoglycemia unawareness or have come to the point where they have tried everything available and are still struggling with their diabetes management. For these patients, Senior has seen increased engagement and better control while using a DIY closed loop.

“Endocrinologists by and large are pretty conservative and will always be a little anxious about recommending things, particularly when there’s this perception of risk,” Senior says. “But patients are already facing risk. The algorithm they’re currently using is in their head or in their gut.” A DIY system, while not perfect, offers relatively little risk in his opinion, as long as the patient has access to the needed sensors and equipment and is willing to learn how to use the system effectively.

Those using closed loop—be it DIY or approved—like the reduced impact that diabetes has on their lives. Barbieri notes that when her daughter transitioned to the Loop app, it freed her up to be a better parent to her other two children. She was suddenly able to offload some of the stress of managing Laura’s diabetes to this system.

This mirrors what Senior has seen, “that reduced burden is what I think people are enjoying. You’re hearing things like, “I’m sleeping through the night, I wasn’t thinking about snacks all the time. It’s just freeing up some cognitive bandwidth to live life.”

This has been true for Farnsworth, who has become one of the DIY community’s biggest advocates. However, she knows it’s not a cure. “It’s not the silver bullet for diabetes, it’s a great tool, it helps us immensely, we couldn’t imagine managing diabetes without it,” Farnsworth says, “But my daughter still has diabetes.”

Interested in learning more about trying a closed loop system? This article from Dr. Bruce Perkins, an endocrinologist and professor at the University of Toronto, provides some of the practical things you should know before starting.

If you have specific questions, please consult your endocrinologist.