How one tech professional is spending his 50th dia-versary riding 200 miles to raise funds for T1D research

 

This year marks Miguel Alvarez’s 50th year living with type 1 diabetes (T1D). To recognize his monumental dia-versary, his sights are set on conquering two century-ride (100 mile) cycling challenges hosted by JDRF. The Sun Life Ride to Defeat Diabetes for JDRF iRides are destination rides in cities across the U.S. to raise funds for T1D research. Miguel’s journey is a remarkable testimony of how individuals living with T1D take control of their disease to pursue their passion.

Born and raised in Southern Ontario, Miguel is an ex-professional drummer who transitioned to a tech-oriented career upon moving to BC. He had never been interested in cycling, but one day his friend invited him to go for a ride. Miguel was nervous, he knew it was a big risk and seemed too extreme. Worried his T1D would hold back his friend, Miguel declined, but despite Miguel’s persistent refusals, his friend continued inviting him until Miguel finally gave in.

After his first ride, Miguel was hooked.

Cycling quickly became a big part of his life, but not without its challenges. Miguel was frustrated by needing to stop multiple times to test his blood sugar. Not knowing what his levels were between each test left him vulnerable to unpredictable emergencies. A year later, Miguel started using a continuous glucose monitor (CGM) that uses a sensor to test and transmit his glucose levels directly to his smartwatch. With it, Miguel monitors his glucose levels in real-time, enabling proactive management of his T1D while riding. Miguel credits his CGM for inspiring his confidence and granting him the peace of mind needed to take his cycling to the next level. This technology not only revolutionized how he rides, but also how he lives.

Living with type 1 diabetes for 50 years, Miguel has witnessed the evolution of diabetes management first-hand. His earliest memory was when he was 3 years old lying in a hospital bed at the time of his diagnosis. “I can’t say for certain what my parents reaction was, but they must have been scared. I can’t imagine, even with my own kids, having to chase around your toddler with needles.” It was equally frightening for Miguel. During his first 10 years living with T1D, the forefront of affordable glucose monitoring was urine test strips that were dipped into a mixture of urine and water to get an approximate reading of how much sugar was present by the colour appearing on the test strip. Determining insulin dosages was guesswork at best.

Flash-forward to today, parents can monitor their children’s glucose levels through their smart phones and set alarms for when their child is going too low or too high. Insulin pumps eliminate the need for multiple injections and can administer precise amounts of fast-acting insulin as needed. The impact this technology has made on the lives of people living with T1D is why Miguel participates and fundraises for the iRide.

“I am a beneficiary of this research; the technology, new insulins, new treatments. I’ve benefited from it all, and I am at the stage of my life where I want to do something meaningful to give back.” Miguel’s motivation stems from his goal to prove what people living with T1D can accomplish.“I want to prove what I can do with this, but it’s a weird balance. It’s a serious condition that needs to be managed, but you can’t disregard the capabilities of people living with it.”

Miguel sets the bar higher for himself each year he rides. To train for two iRides, he sacrifices weekend sleep-ins and dedicates his time to cycling for over 6 hours to condition his body, in addition to hours in the gym during the week – but the physical aspect of training is only half the battle. A constant risk for Miguel while riding is his blood sugars dropping too low; failing to treat a low can result in (and is not limited to) seizures, loss of consciousness, and even death. Exercise increases the reactivity of insulin, so it’s common for people with T1D to go low while being active. Miguel’s friends get a kick out of him when he rides, because with him he carries:

  • Gels
  • Bloks
  • High-quality granola bars
  • Fig Bars
  • Fruit bars
  • Trail mix/Salted nuts
  • Water bottle containing 1 cup syrup and the rest orange juice
  • Water bottle containing water

When Miguel sees other cyclists carrying nothing more than a cell phone and a water bottle, all he can think is: “Must be nice.”

Miguel rode his first iRide in Tuscan, Arizona in 2017, where he fundraised $2500. “It was a daunting task,” he said, “I’ve never raised money for anything in my life. I basically said, I’m going to do it, so I took the pledge and signed up. I didn’t have any sort of expertise or strategies, but I thought… I have a story I can tell.” Using the template emails provided in JDRF’s iRide toolkit, Miguel wrote his story growing up and living with T1D and sent it to his family, friends, and co-workers. The response he received was overwhelming. “I was totally shocked by the support I received; I ended up raising more than enough to qualify.” Since then, Miguel creates videos to bind imagery to his story and shares them through social media. “Most people don’t really know what it’s like. They get it that you take insulin, but they don’t know or see the ongoing battle day to day.”

Working as a project manager in the Tech-industry for 19 years, Miguel’s coworkers have supported his fundraising efforts for the Sun Life Ride to Defeat Diabetes for JDRF – iRide. They have donated money and featured him in their community newsletters to share his story and raise awareness of type 1 diabetes.  

“Fundraising for two iRides is challenging”, Miguel says, “If I can’t raise enough for both, I’ll pay my way for one.” Miguel’s priority is raising awareness, proving he is unimpeded by T1D, and inspiring a younger generation. “For parents who are scared or worried, I want to show them that people living with T1D can do whatever they want. Today, if you’re a child with T1D, there is no reason to have doubts to what your possibilities are and what you can achieve.”

We wish Miguel the best of luck on his 50th dia-versary milestone and thank him for his continuous support. If you want to support Miguel’s mission, please visit his fundraising page and follow him on:

Instagram: miguel_type_none
Facebook: Miguel Type’None

The necessary evolution of how we fund a cure

 

“Our Ride first started with 8 stationary bikes and 20 people.”

Peter Oliver, one of the founders of the Oliver and Bonacini Restaurant Family and a passionate leader in the type 1 diabetes community, was there at the beginning, “I was Chair of Fundraising for the JDRF Toronto Chapter,” says Peter “and I’m not exactly sure where the idea of the stationary bikes came from, but we were looking for a way to engage the corporate community.”

One of JDRF’s signature fundraising events to raise money for a cure to type 1 diabetes (T1D), the Sun Life Ride to Defeat Diabetes for JDRF will see over 12,000 people come together across the country to raise $3.6 million in 2019. But it wasn’t always like this.

“In that first year we raised $12,000,” said Peter. “There was a lot of music, bells, and we quickly realized that this event had potential because people were excited. You could see the excitement on the bike.” After that first year, the Ride saw incredible growth as a fundraising event with both the number of participants and the total dollars raised increasing exponentially. “That first year, about half of the twenty people had a connection to type 1 diabetes while the other half didn’t, they came back because of the spirit of the event.”

The Ride has always been a means to an end – a cure for type 1 diabetes – but making it a fun and impactful event has been of the utmost importance. As the event grew, people from different corners of the corporate world began to participate and all of a sudden the Ride started to evolve. “I’m not sure when we started to establish a ‘banking challenge’ and a ‘real estate challenge’, it was just the natural evolution of the event, ” Peter recalls.  “These changes were just what we had to do. When you’re hustling, you move with ideas that work.”

Peter’s hustle to find a cure for type 1 diabetes is fueled by his daughter, Vanessa, who at the age of 6 was diagnosed with T1D. Like any father, he can’t help but talk about his daughter’s accomplishments, “she actually established the Real Estate Ride and has raised $4-$6 million through that alone. I don’t think there is anybody her age who has done more for JDRF than she has.”

The Ride has since become an important corporate event that mobilizes business leaders to raise money to fund ground-breaking T1D research while offering a fun team-building opportunity and engage employees in corporate social responsibility. Where this event is today is because of the commitment and forward-thinking perspective people like Peter and Vanessa have brought.

So we asked Peter, what’s next?

“There are plenty of people who have been participating for 12 years or more, but we can’t rest on our laurels, says Peter. “The ingenuity in changing the event today has to be the same as what we did that first year.”

Following Peter’s advice, we decided to innovate in the way we recognize our fundraising superstars this year. Because innovation in these types of events isn’t just about staying on-trend, it’s also about recognizing the fundraising success of participants and thanking them in increasingly special ways. That’s why 2019 will be the first year Ride team participants who raise the qualifying amounts below will receive personalized team apparel* to wear on event day.

The Sun Life Ride to Defeat Diabetes for JDRF is, at its core, a fundraising event and thanking participants for their work is of the utmost importance. Canadians can register for their local Ride today, either as members of a team or as an individual, and as Peter notes, they don’t need to be personally connected to type 1 diabetes, “We’ve been quite successful in engaging people with no connection to diabetes. It’s an opportunity for us to inform people about the disease.”

“[At the Ride] we introduce a notable member of the community – someone who has raised the most amount of money or a child that wants to thank participants for raising money. Constantly reinforcing why participants raise the money that they do.” Be part of Ride as it continues to evolve and help change the future of type 1 diabetes research.

 

Ask a Diabetes Nurse: Hannah Breadon

Guest contributor, Hannah Breadon

 

My name is Hannah Breadon. I am a Certified Diabetes Nurse Educator who has lived with type 1 diabetes for 20 years. Over the years I have been involved in many diabetes events including JDRF’s Rockin’ for Research Fundraising Gala in Vancouver, and 10 years of work with Camp Kakhamela, a pediatric and family diabetes camp. I have used an insulin pump for 14 years and have recently gone on a “pump holiday”, switching back to multiple daily injections which I have really been enjoying. When I am not working, I enjoy staying active through soccer, softball, and surfing!

Throughout my career as a Diabetes Nurse Educator I have been asked all kinds of questions from people living with type 1 diabetes and their families. I’ve taken this opportunity to answer the most common questions about type 1 diabetes management. Here are just a few of the ones I hear most frequently.

 

How worried should I be about a high A1C during the teen years?

Maintaining an A1C in target can be challenging at times, especially when you are busy being a teenager. Technologies such as continuous glucose monitors (CGMs) or flash glucose monitors (FGMs) can help to lower A1C and take away some of the extra work with completing blood sugar checks frequently. Overall do your best to maintain an A1C in target range, and ask for help from your health care providers if you are feeling overburdened by diabetes.

Can I consume alcohol? What do I need to know about drinking alcohol while living with T1D?

When of legal age, alcohol consumption is something that people with diabetes can do safely if certain precautions are taken. Depending on the type of alcohol being consumed the blood sugars may rise initially, although can lower into a hypoglycemic range even up to 12 hours later. It is very important to monitor blood sugars closely when drinking alcohol. Please make sure your friends are aware of the signs of symptoms of hypoglycemia in comparison to intoxication, and understand how to treat a low if needed. One very important note is that glucagon does not work if alcohol is in your system. The liver works to detoxify the alcohol, and thus the action of glucagon doesn’t work.

Dawn phenomenon; what do I do about this? Anything I need to know?

Some individuals with type 1 diabetes experience an elevation in blood sugars early in the morning, usually around 3-7am. This is known as the Dawn Phenomenon. If you are wearing an insulin pump you can create a basal rate midway through the night to address this elevation in blood sugars.

How do I navigate an emergency room and ensure I can continue to monitor and administer insulin while healthcare providers are working to take over health care management?

If someone living with type 1 diabetes is brought to an emergency room, the primary thing I would recommend doing is to explain to the health care providers what type of insulin therapy or technology you are using. Depending on the reason for the ER visit, it may not be possible for you to continue to wear your insulin pump, CGM or FGM. As a whole, you may have to act as an advocate for yourself and provide some education regarding your insulin therapy and technology used. If you are clearly able to detail to the health care providers what type of technology you are currently using you may be able to continue wearing them while in the hospital.

I don’t understand the difference between interstitial fluid and blood glucose

Interstitial fluid is the fluid which is floating around your cells. With continuous glucose monitors, the glucose in the interstitial fluid reacts with the coating of the small wire inserted into the tissue and transmits a signal which then converts to a blood sugar value. The important thing to note is that glucose first moves from the blood cells and then goes into the interstitial fluid. In terms of CGMs, this then means that the value presented on the CGM could be delayed if your blood sugar is rapidly rising or falling. In situations where you are experiencing low or high blood sugars, it is best to complete a finger blood sugar check to ensure you are able to react appropriately to your current number.

Do I need to be on an insulin pump?

Insulin pump therapy is a great tool for some individuals living with type 1 diabetes. Pump therapy can provide more precise dosing, more flexibility adjusting insulin, and more steady absorption of insulin. That being said, insulin pump therapy is not for everyone. Some individuals find that working with Multiple Daily Injections can correspond with a great A1C value in comparison to pump therapy. A few considerations when thinking about pump therapy is the readiness to learn, willingness to wear a device 24/7, and finances.

Diabetes management is unique for everybody and it’s normal to have many questions even long after your diagnosis. Do you have any pressing questions that I have missed? Feel free to send them my waythrough JDRF’s Facebook, Twitter and Instagram accounts! Just use the hashtag #AskT1DNurse

The sky is the limit for MMA star and diabetes researcher living with T1D

 

Each time Dessi Zaharieva shares her story about life with type 1 diabetes (T1D) she not only leaves her audience inspired, but in awe. That is because the engaging 30-year-old with an indomitable spirit never let her condition impede her dreams of becoming a consummate academic in the field of diabetes and a highly accomplished mixed martial artist.

Dessi and her family emigrated from Bulgaria to Toronto in 1993. When she was was seven years old, her parents took her to the hospital to ‘pick up some medication’. Little did Dessi know that she would end up spending the day being poked and prodded and later told that she had T1D.

“My parents were quite scared, so they were beside my hospital bed in tears,” recalls Dessi. “English was their second language and not understanding all the doctor’s jargon definitely made my diagnosis one of the most challenging times for them. I was just trying to wrap my head around this new disease and new life requiring daily insulin injections.”

Learning to adjust to her condition proved demanding at first, especially when it came to practising sports – one of her passions.

“Living with T1D is very similar to our blood sugars; there are many ups and downs, highs and lows,” Dessi explains. “My biggest challenges were often related to exercising.”

Prior to her diagnosis, Dessi had enrolled in a Taekwondo class with her brother. Despite not knowing how it would affect her T1D, she was determined to continue.

“When I was a young kid, we didn’t have access to support groups or as many published research studies,” she recounts. “My family also didn’t know that different types, intensities and durations of exercise could impact blood sugar levels and that the risk of hypoglycaemia is elevated for at least 24 hours in recovery from exercise.”

Preparing for national and international martial arts competitions was another learning curve for the aspiring young athlete. At the age of 16, Dessi earned a spot on Team Canada for the World Championships, a biennial athletic competition. For many summers, she returned to her native Bulgaria to train with its National Team. Despite a torn meniscus and two torn ACLs – not to mention a surgeon who told her she would likely never compete again – Dessi pushed through rehab and returned to top form. In 2013, she competed at the International Taekwondo Federation World Championships in Bulgaria and won the bronze medal in women’s individual sparring in her weight category.

“I was trying to lose weight to fight in a lower weight category,” Dessi relates. “This meant that on top of my training, I was also trying to lower my carbohydrate intake, which led to a few scary episodes of hypoglycemia overnight.”

These experiences sparked her interest in T1D research and acquiring a better understanding of human physiology and exercise metabolism. Last year – while working in the lab of JDRF-funded investigator Dr. Mike Riddell – Dessi earned her PhD in molecular, cellular and integrative physiology at the School of Kinesiology and Health Science at York University in Toronto.

“My research focus has always been related to strategies for improving diabetes management particularly around exercise,” says the recipient of the highly competitive and prestigious Vanier Canada Graduate scholarship for PhD research. “For me, the hardest thing about living with T1D is that no two days are ever exactly the same. We can try and control specific conditions, but there is so much individual variability, which is another reason why more research is needed in the field in order to establish guidelines and form consensus statements.”

Over the years, Dessi and her family have participated in JDRF’s annual Walk to help raise T1D awareness and funds for research. In 2018, she served as Master of Ceremonies at the organization’s national leadership conference.

“Living with diabetes can feel so lonely at times, but being involved with JDRF events has given me an outlet and a support to share my story and also learn from others,” she says.

Today Dessi is a mixed martial artist and a flourishing young scientist. She is also a regular at Dskate, a hockey and diabetes educational camp for youth living with T1D. As well, she is part of the I Challenge Diabetes team, a group dedicated to creating opportunities for people with T1D of all ages to overcome obstacles and find support.

For the past six months, Dessi has been conducting post-doctoral research under the mentorship of Dr. David O’Neal at The University of Melbourne in Australia. Some of the topics range from next-generation closed-loop systems and exercise to implantable sensor technology and faster-acting insulin.

“JDRF has always been committed to raising money to support cutting-edge research,” relates Dessi. “As a scientist and a patient with diabetes, the focus on finding a cure hits really close to home.”

In the future, Dessi hopes to have her own research lab. Yet a cure for T1D remains her foremost wish.

“A cure would mean…freedom and conquering,” says Dessi. “It would mean that for once, we could focus on something other than our diabetes. We would not have to think about whether we have our needles, glucose meters, insulin, pumps, reservoirs, cannulas, snacks, etc. each time we leave the house. It would also mean that as a team, we have succeeded with our research efforts.”

And while that would be a dream come true for many people, Dessi is quick to add that a cure would not detract from one positive aspect that came from growing up with T1D.

 “A cure would not change the incredible community and support system we have around us,” she states. I have made so many lifelong friends who have now become my ‘chosen family’. And a cure would never take that away from me.”

Hypoglycemia Prevention: Testing a disposable patch that facilitates insulin therapy

One of the greatest fears among many people living with type 1 diabetes (T1D) is insulin therapy-associated hypoglycemia (low blood sugar). Marked by symptoms such as trembling, sweating, confusion and dizziness, the condition can lead to seizures or a coma, and even death.

Dr. Xiao Yu (Shirley) Wu, a JDRF-funded investigator at the University of Toronto, is developing a glucose-responsive, microneedle patch for the delivery of therapeutic hormones to prevent hypoglycemia in T1D patients.

Applied to the skin during sleep, exercise or when performing full-attention tasks such as driving, the patch will sense when blood glucose levels are below the normal concentration and then automatically release the counter regulatory hormone, glucagon, for better glucose control.

Hypoglycemia is one of the most serious acute complications associated with insulin therapy. In their latest paper in Advanced Materials , Dr. Wu and her team show how the microneedle patch has the ability to minimize the risk of hypoglycemic episodes and death among people living with T1D, and alleviate the psychological burden of hypoglycemia anxiety, thereby improving quality of life. At the same time, it is also convenient, painless and potentially inexpensive.

“With the generous support from JDRF, our team will continue advancing the development of the glucose-responsive glucagon patch, aiming at clinical trials in the near future,” says Dr. Wu.

For more informative articles on health and type 1 diabetes, visit our JDRF Blog. 

JDRF collaborates on first-ever diabetes and cancer research initiative

Imagine being treated for one disease only to learn that form of therapy may lead to another grave condition. New research has revealed that some patients are diagnosed with autoimmune disorders following cancer immunotherapy. According to a study published in the journal Diabetes, roughly 1% develop a form of insulin-dependent diabetes similar to type 1 diabetes (T1D).

JDRF International, The Parker Institute for Cancer Immunotherapy and The Leona M. and Harry B. Helmsley Charitable Trust recently announced a collaborative research initiative to better understand this phenomenon and to identify the causes of T1D following checkpoint therapy for cancer. The three non-profits are jointly funding $10 million in autoimmunity research over a three-year period.

“This collaboration combines leading experts in diabetes and cancer immunology to accomplish a feat that has never been achieved: permanently turning off an autoimmune response in humans,” says Dr. Aaron J. Kowalski, JDRF International’s President and CEO. “Investing in this research will help us better understand, in real time, how T1D develops and potentially disable the immune system so that disease progression never happens.”

The initiative marks the first time that prominent cancer immunotherapy and diabetes research organizations have teamed up to explore the link between these two chronic diseases. Investigators are hopeful that their findings will also provide greater insight into the causes of T1D in the broader population.

For more informative articles on health and type 1 diabetes, visit our JDRF Blog

TrialNet Study: Immunotherapy can delay type 1 diabetes diagnosis

What if people at risk of developing type 1 diabetes (T1D) could curb the progression of the disease by a couple of years?

Earlier this month, TrialNet’s Teplizumab Prevention Study revealed that teplizumab, an immunotherapy drug that suppresses the immune system, delayed a diagnosis of T1D by an average of two years in children and adults at high risk. Results were presented at the American Diabetes Association’s 79th Scientific Sessions and published in the New England Journal of Medicine.

Immunotherapy is a promising form of treatment that could one day become an insulin-free alternative to potentially cure T1D. It involves the use of substances, such as drugs, to stimulate or suppress the immune system to help the body fight diseases.

All participants in TrialNet’s Teplizumab study were relatives of people with T1D and thought to have close to a 100% chance of developing the disease in their lifetime. Of the 76 high-risk individuals who took part in the trial, 55 were under the age of 18.

Funded by JDRF and the National Institutes of Health (primarily through the Special Diabetes Program), this research represents a major breakthrough in the area of prevention. While previous studies showed teplizumab prolonged insulin production in people recently diagnosed with T1D, this is the first to demonstrate that a drug can delay a diagnosis in high-risk individuals.

“Delaying the progression of type 1 diabetes (T1D) is the only approach in the short-term to impact the incidence and prevalence of the disease,” says Dave Prowten, JDRF Canada’s president and CEO. “This study marks an incredible advancement in research that will not only affect many people living with  T1D, but also help bring us closer to our goal of turning type one into type none.”

For more informative articles on health and type 1 diabetes, visit our JDRF Blog. 

Fighting for her freedom. Fighting for her insulin pump.

24-year old Jessica Williams, a long-time JDRF volunteer turned JDRF staff member who has been living with type 1 diabetes (T1D) for 14 years now, is focused on enjoying her life as much as she can. She credits the freedom she has to her insulin pump but keeping both has been a battle.

“Recently, I didn’t have insurance to cover [the pump] and neither did my partner,” Jessica recounts as she’s overcome with emotion. “I was telling myself that I’d have to go back to needles, but my big fear was that I wouldn’t do it and would end up hurting myself. The pump just gives you so much freedom and control.”

Jessica’s experience is not unique. One of the biggest challenges facing Canadians living with T1D is the significant out-of-pocket expense required to manage their disease. “If I didn’t have coverage through pharmacare or my partner’s insurance it would be $700 out of my own pocket every month,” says Jessica who now gets coverage as a JDRF staff member.

The medical benefits of using insulin pumps over daily injections are significant, with a reduction in glucose variability and improved quality of life observed in users. And while some provinces and territories provide coverage for these devices, most of the time it’s only covered until 18, 19 or 25 years of age (depending on the province or territory), leaving young adults to carry this financial burden for the rest of their adult lives. Jessica and all other insulin pump users know what the solution to this problem is: Provinces and territories need to remove age restrictions on insulin pump coverage. But this won’t be done without the T1D community’s help.

“Start doing things,” says Jessica. “You need to start making those phone calls, start writing those letters, start booking those meetings. While it does take time out of your busy schedules, it doesn’t do anything to sit and talk to people unless you’re talking to the right people. It makes such a big difference to get actively involved.” That’s why we’ve made it easy for the T1D community to speak out and help remove age restrictions on insulin pump coverage by emailing their provincial representative.

It’s important to know that even for those like Jessica who do get insulin pump coverage through their employment insurance, it is not always an easy process to navigate. “Even though I’m covered for the pump now, I need to provide proof that I need it,” explains Jessica. “My pharmacy needs to send all of my prescriptions to my endocrinologist, and then my endocrinologist has to sign them and complete a letter stating that I have diabetes. I’m talking to three different people [from the insurance company] and it’s taking close to a month just to prove that I have diabetes, that I have a pump and that I need coverage.”

Private coverage is important, but provinces and territories can set a good example for all insurance companies by supporting the immediate needs of the type 1 diabetes community. If you’d like to help people like Jessica and make insulin pumps accessible for everyone living with T1D, send a letter to your Premier and Minister of Health urging them to remove age restrictions and improve the lives of thousands of Canadians.

Committee recommends Disability Tax Credit for all with type 1 diabetes

 

 

Last month, Canada’s Disability Advisory Committee (DAC) released their first annual report which amongst other recommendations, stated that all Canadians receiving life-sustaining therapy (eg. insulin) should qualify for the Disability Tax Credit (DTC).

The DAC was established in late 2017 by the Minister of National Revenue following successful efforts by JDRF Canada and Diabetes Canada to restore access to the DTC for more than a thousand adults with type 1 diabetes (T1D) who had been denied due to a change in eligibility requirements. The DAC’s mandate is to advise the Canada Revenue Agency (CRA) on how it can improve the way it administers and interprets tax measures for Canadians with disabilities, and how it can better respond to the needs and expectations of this community.

The loss of the DTC was a significant blow to the financial well-being of members of the T1D community. This report, which it presented to the minister of National Revenue and the CRA commissioner, is creating hope that the daily realities of type 1 diabetes will be made a bit less stressful for people like JDRF advocate Kelsey Levandoski, who took it upon herself to visit her Member of Parliament (MP) to discuss her concerns about issues with the DTC.

Diagnosed with T1D 20 years ago at the age of 8, Kelsey’s family was presented with many challenges and as one of four children in her household, the costs were adding up quickly. She had been in and out of the hospital with low blood sugar levels and more serious diabetes complications. Last year, she was finally able to start on a Continuous Glucose Monitor (CGM), which gave her the blood glucose control she desperately needed.

This year, Kelsey started on an insulin pump and feels she now has the ability to self-manage her condition. “I feel like I am more in control of my type 1,” she says. “Although it is still a challenging thing to live with, I now have the tools to be able to live better, but it comes with costs and sacrifices.”

Luckily, Kelsey has coverage through her employer, but like most plans, there is a maximum which doesn’t take long to reach, leaving her to pay out of pocket for these supplies. The CGM and insulin pump supplies alone are over $700 monthly excluding insulin, test strips, ketone strips, etc. 

When she learned about the DTC through a social media group, she wanted to take advantage of it. After jumping through many hoops to get her healthcare professional on board, Kelsey was denied not once, but twice before she decided she was going to have to advocate for herself. She visited the office of her MP Larry Maguire, and sought his help. Kelsey’s determination and self-advocacy resulted in a win for her – she was approved for the DTC up until 2023.

Kelsey’s advocacy efforts are a great example of what happens when we speak up to make change happen. However, this should not be such a difficult path for people. As the DAC report suggests, the federal government should make the DTC refundable for all persons with disabilities, including those living with T1D.

“I envision fewer obstacles for people,” says Kelsey. “Type 1 diabetes isn’t your ‘typical disability’ but is time consuming, costly and a very exhausting condition. For some families, it’s a matter of choosing between paying bills or purchasing insulin and that is a position no one in Canada should be put in. I found my voice through this experience and I want to continue to help and be a voice for as many people as possible”.

You too can influence change by joining Kelsey and the rest of our advocate team to improve policies that affect all people living with T1D. Join us and make a strong impact with your personal story.