Modern Legacy of Insulin and Impact of Diabetes

by Ellen G. Fraser

Ellen is a Canadian neuroscientist and outdoor enthusiast, who works in medical regulation. She has grown up with Type 1 diabetes and worked with the diabetes community for most of her life. Her work with the diabetes community has ranged from youth programming with Diabetes Canada, to academic research on the implications of diabetes on the brain, and the benefits of peer-support interventions for folks living with diabetes.

Insulin as the start

It is hard to characterize the modern legacy of the discovery of insulin in my life without just saying that it’s allowed for my life and everything in it. Aside from giving me the ability to live, insulin, and what it has allowed, has been so omnipresent that there isn’t a single chapter that hasn’t been influenced by it. So thank you, Drs. Banting, Best, Macleod, and Collip for your work. I think you all were mostly focused on allowing people with diabetes to live, but the grandchildren of your labor are lives filled with community, purpose, and strength.

My diagnosis and early days

My diagnosis was fierce and courageous, heartbreaking and empowering. I have no memory of my diagnosis, however this story very much set the precedent of establishing and investing in community for the rest of my diabetes journey. I think that Banting, Best, Macleod, and Collip knew that their work was life-changing, but I sometimes wonder if they knew it would be life-making—that the experiences of living with diabetes were undiscovered before their work, and that with insulin came diabetes-specific joys, fears, stressors, and community.

Over Christmas in 1997, I was 18 months old, and my family was celebrating the holiday. I couldn’t get enough apple juice. I was unhappy. There were seemingly not enough diapers in the world for me. My parents noticed these signs and the alarm bells went off. My mom, a pharmacist, used her spare key for her friend’s pharmacy to get some urine testing strips, did my first urine dip, and saw the colours change. My parents raced me to the Hospital for Sick Children, where I like to think that my mom diagnosed me with type 1 diabetes. My mom is fierce and courageous, so it is hardly surprising that my diagnosis story is too.

Having an 18-month-old with type 1 was hardly easy, it was a massive learning curve for my family, and the fear that my parents faced about what my life would look like is truly heartbreaking to hear. I think that even with the advancements in treatments and technology, this fear is just as powerful and intense for parents of kids with type 1 today. That fear was, however, also very empowering for my parents. My dad would wake up every few hours, all night, every night, to test my blood sugar. They were adamant that their fear wouldn’t be carried by me, that I’d be aware of risks but not afraid of them. My parents created rituals and games to make diabetes routines fun, we’d dance before needles, put stickers on everything, and they sent me to Camp Huronda. Sometimes I wonder if Banting, Best, Macleod, and Collip ever thought of that. That through their work, they gave people the opportunity to live with diabetes, to dance before needles, and to have community with others living with diabetes. So much about living with type 1 as a kid is scary, uncomfortable, and hard to understand. My parents did their best and really succeeded at turning their fear and my frustration into learning moments and normalizing type 1 at every stage of my childhood.

Me, in 2000, at my first JDRF Walk to Cure Diabetes

The initiative that my family showed, embracing type 1 and incorporating it into the woodwork, despite the fear associated with it, set a precedent of carrying it with me as a strength. Every year of elementary school I would give a presentation to my classmates about diabetes. First, they were about how to help me if I was in trouble, and then they morphed into science-storytelling presentations. Once again, they made sure I was aware of the risks, but not afraid of them. Reader, remember young Ellen giving science-storytelling presentations, she’ll be back later. These presentations also cemented early on an understanding that educating the people around me was a matter of personal safety, it was building my safety net to catch me if I fell. What I didn’t know was that they also established early on in my classes that my diabetes was a strength, a point of interest, and something that warranted compassion over bullying. I didn’t learn until I was a pre-teen that a lot of kids are bullied for their diabetes, because community had always been a part of living with diabetes for me. My mom’s community had provided her resources when I was diagnosed, and my community was educated on what I needed in my safety net. Community is still one of the most sacred parts of living with diabetes for me.

Camp Huronda and connections

My first year at Camp Huronda in 2004

Camp Huronda came into my life as a tool to prepare me for overnight school trips, so when I was in 2nd grade I started going to camp. If only I knew that camp would outlive school and that I’d be doing school projects inspired/about camp. My first year at camp I cried every day because I was homesick. My poor counsellor tried her best, but I was inconsolable and I’m sure she never expected to see me back at Huronda again. But on the last day of camp I was still crying, and she asked me, “Why are you crying? You’re going home today!” And I told her that I was going to miss her and camp. Every year after that I barely felt homesick, but when I’d get home after camp, I’d feel camp-sick. I loved that at camp we had diabetes-specific humour, songs, and games. I loved that those scary, uncomfortable, hard to understand moments of living with type 1 were experienced together. Some of my best friends were made through those shared experiences at Huronda. I loved having role models with type 1. My counsellors were the coolest people I knew, they were my heroes and sometimes they even wore capes! I imagine that before insulin, diabetes was incredibly lonely. The discovery of insulin has allowed for individuals to live with diabetes, but also for those individuals to connect, have meaningful diabetes experiences together, and feel a sense of belonging.

My superhero counsellors in 2009

It is probably not surprising that after all that Huronda love, when I turned 16, I started working there. I worked at Huronda from 2012-2016, and again in 2018. I never took working there for granted, every year during hiring I’d get incredibly anxious, and every summer working there I found myself in awe of how enriching that experience was in my life and in the lives of the other staff and campers. My last few years I took a lot of pride in working with the Leadership Development Program, developing skills in individuals who would hopefully be the next generation of Huronda staff.

During my undergrad I was stuck on this idea that some of my favourite people were Huronda people and were living with type 1, and that there was something about our shared experiences and how they shaped who we are that I wanted to learn more about. While my brain seemingly isn’t built for philosophy or psychology, maybe all the type 1 science-storytelling presentations primed me, because I landed in neuroscience. First, I focused on learning and memory since I was fascinated with them as the tangible part of how our experiences change us. Then, I was able to use some of my research skills to land in a lab that studied stroke and diabetes. Part of my job was to give mice diabetes and joked that my high success rate was due to me sneezing on them. Then, I went back to learning and memory and studied at the Canadian Centre for Behavioural Neuroscience. Throughout my research time, I’d see awards and buildings named after Banting (and sometimes Best too), and it was comforting to know that their work, which has impacted me so personally and inspired my research interests, was also still widely recognized by the rest of the scientific community. Now I work in Canadian medical regulation, so I like to think that there is a full circle narrative between the medical innovation that I’ve benefitted from, the community that I’ve been able to experience thanks to that medical innovation, and my career which involves both innovation and peoples’ experiences.

A leadership development program trip in 2016

Type 1 chronic community

After I stopped working at Huronda I felt some disconnect from the diabetes community, and I did two things. First, I started to get involved with Connected in Motion, on their Adventure Team, where I now serve on the Board of Directors. Second, I got involved in diabetes research with Dr. Tricia Tang at UBC, focusing on distress and mental health in folks living with type 1. Diabetes-specific stressors are incredibly important because they are more likely to be overlooked by more generalized resources, they are the ones that folks living with type 1 might be less aware of as stressors, and sharing those experiences with others living with type 1 was a significant contributor to the sense of community I experienced at Huronda. Furthermore, there are significant mental health effects in people living with type 1, and so resources for mental health supports and diabetes-specific understanding are necessary. Being a part of the diabetes community means that I have the privilege of celebrating the wins with everyone else, but it also means that where there is room to grow, I want to do my part.

The adventure team trek with Connected in Motion in 2018

Speaking of room to grow, mental health supports are lacking and inaccessible for many folks living with type 1, in addition to limited diabetes healthcare, especially in remote regions and for folks transitioning into adulthood. There is room for growth by ensuring that there are local successors for endocrinologists that retire in remote regions, and by providing specific care for young adults so that youth don’t fall through the cracks when they transition into adult care. Furthermore, the cost of insulin and diabetes technologies are barriers for a lot of Canadians to pursue adequate standards of care. New coverage programs are a step in the right direction, but there is a lot more to be done. We need to ensure that Canadians are able to choose both the best diabetes care and to put food on the table, rather than having to sacrifice and/or rely on private insurance programs. The advocacy that is taking place globally for folks living with type 1, with regards to the cost and access to insulin and diabetes technologies is another massive part of the modern legacy of the discovery of insulin. This life-saving drug and resources are available, but people are still dying due to insulin inaccessibility.

I may have stopped working at Huronda, but as we say, “it never stops, it never ends” and that has certainly been the case for me. Maybe a year after I stopped working at Huronda they asked me to be a part of the 50th anniversary committee. One of the benefits of investing in a community based in chronic illness is that you’ve got chronic community, which is truly beautiful. In all the branches of the diabetes community that I’ve had the privilege of being a part of, there are people who are living with diabetes to the fullest. If Banting, Best, Macleod, and Collip’s goal was for people to live with diabetes, they achieved it and we are exceeding it.