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He has met with ministers, senators and members of Parliament to share his story about his diagnosis of type 1 diabetes (T1D). He has advocated for policy change for access to affordable insulin for all Canadians with T1D. He has served as a spokesperson at fundraising events and schools to discuss the triumphs and struggles of a teen living with T1D.

Meet Noah Silvaggio, an ambitious 16-year-old JDRF youth ambassador who was voted one of Manitoba’s Top 40 Young People to Watch in 2018 in the category of community activism and social affairs.

Five years ago, Noah was preparing for 7th grade when he began to experience flu-like symptoms. His breathing became laboured and by the time he reached the hospital, his kidneys had begun to shut down. Noah then received some shocking news: he had T1D.

“I remained at the hospital for five days to learn about T1D and how to manage it,” he recalls. “It was a learning curve for all (my family) to adjust to my new normal.”

Following his diagnosis, Noah was invited to give a speech hosted by DER-CA (Diabetes Education Resource for Children and Adolescents) at the Children’s Hospital HSC Winnipeg, which offers specialty services to children and youth under the age of 18 with T1D or type 2 diabetes. It was during this period that he began to volunteer at JDRF, enrolled in the Walk and Ride, and signed up to be a youth ambassador. Not only did Noah serve as a guest speaker at the 30^th anniversary of JDRF’s Starry Starry Night Gala – the largest audience before which he had ever spoken – but he also had the opportunity to attend Kids for a Cure Lobby Day (2018) in Ottawa.

“It was an amazing experience,” he says. “I met government officials and really emphasized that in Canada we shouldn’t have to choose between buying insulin and buying food.”

To date, Noah continues to lobby the Manitoba Legislature for insulin pump coverage for all Manitobans with T1D. He writes letters, meets with public servants and participates in local advocacy initiatives to raise awareness. The young activist has also donated $30,000 to JDRF through fundraising and the sale of his art (animal sketches) and jewelry made by his sister.

Noah was the recipient of the Boston Pizza Youth Ambassador of the Year award in 2018. When he isn’t out in the community trying to make a difference, he devotes time to mentoring youth with T1D.

“I like helping others and telling them they can do anything they did before their diagnosis – that it just requires planning, patience and support,” he says.

Noah currently uses an insulin pump, along with a continuous glucose monitoring (CGM) device. An active teenager who enjoys hockey, soccer, snowboarding and Spartan races, he has grown accustomed to checking his sugar levels during sports. Although his condition is more stable now and carb counting has become a way of life, he is hopeful that a cure for T1D will be found one day soon.

“A cure would mean freedom from constant worrying and being 100% in my game without thinking of T1D first,” Noah says candidly. “My Mom could finally sleep the night without checking in on me.”

Dr. Timothy Kieffer, a JDRF-funded investigator and professor in the Department of Cellular and Physiological Sciences and the Department of Surgery at the University of British Columbia, has been awarded a new two-year grant to continue his research involving insulin-producing cells as a potential cure for type 1 diabetes (T1D). This award is building off the breakthrough improvements established by the Edmonton Protocol, which demonstrated a quick and effective procedure to transplant insulin-producing islets into a recipient, and reduce or eliminate the need for injections.

Over the past several years, there have been remarkable advances in unraveling the process by which beta cells develop. This has led to the replication of many steps in the laboratory using cultured stem cells culminating in insulin-producing cells. There is growing evidence from many different academic and industry groups around the world that pluripotent stem cells represent a promising source for the derivation of unlimited quantities of insulin-producing cells to treat diabetes. To date, Dr. Kieffer and his team have successfully cultivated islet cells that have been able to reverse diabetes when transplanted into mice. Current clinical trials have been testing these cultured stem cells using encapsulated devices that are implanted under the skin.

One of the greatest challenges researchers face in this field is the design of a device that permits a sufficient supply of oxygen and nutrients to promote cell survival and function. As a result, Dr. Kieffer is assessing the feasibility of treating diabetes when cells are implanted directly under the skin, muscle or into the liver without the use of a device, employing the same practice as that used in the Edmonton Protocol.

This project will involve two different animal models to identify a practical and clinically viable procedure that will treat diabetes with insulin-producing cells derived from stem cells, thereby laying the groundwork for a new clinical trial for patients with T1D.

The impact of Dr. Kieffer’s research on the T1D community will be profound. With the successful implantation of stem cell-derived insulin-producing cells into a person living with T1D, this potential therapy can possibly eliminate the need for insulin injections and constant monitoring of a patient’s condition.

Clinical islet transplantation is viewed as a viable treatment that has the potential to eliminate a life-long dependence on insulin in individuals with type 1 diabetes (T1D). However, given the challenges of autoimmunity in islet transplantation, powerful immunosuppression therapies are currently required to prevent acute and long-term graft rejection.

Despite the immunosuppression treatments used in Dr. Shapiro’s islet transplantation program in Edmonton, the majority of research subjects still require two or more islet transplants to achieve insulin independence. The current immunotherapy regime consists of a combination of induction, anti-inflammatory and maintenance therapies, which have contributed to higher success rates in islet transplantations; however, the development of a life-long, high-dose immunosuppression therapy is still needed to limit side effects and promote beta cell insulin production.

In his new $1.5M JDRF-funded research project, Dr. Shapiro aims to address the most significant key gaps in beta cell replacement therapies.

His research will focus on:

1.         Optimizing the Stem Cell Source: Investigators have yet to determine which stage of stem cell differentiation will generate the most functional beta cells after transplantation in humans;

2.         Cell Protection: Dr. Shapiro will test the safety and efficacy of regulatory T cell infusions to preserve beta cell survival and function in humans, with much less need for anti-rejection drugs; and

3.         Accelerating Clinical Translation: While human trials will be developed for islet transplantation with the standard use of immunosuppression, they will provide valuable clinical information regarding the safety and effectiveness of these novel treatments that can be implemented in future cell replacement therapies.

Dr. Shapiro’s study has the capacity to transform T1D research in Canada and around the world. By optimizing the stem cell source, validating strategies to protect cells from the immune system after transplant and accelerating clinical translation, we will certainly move closer to promising discoveries that will cure T1D and improve the lives of countless Canadians.

Dr. Anne Maria Pesenacker, a JDRF-funded investigator at the University of British Columbia and now at UCL’s Institute of Immunity and Transplantation, is examining how regulatory T cells (Tregs) function in health and how best to monitor their fitness.

Tregs are a specialized type of white blood cell that prevent immune cells from attacking the body. When they stop functioning, autoimmune diseases such as type 1 diabetes (T1D) can occur. In T1D, Tregs fail and effector T cells attack and destroy the insulin-producing beta cells in the pancreas resulting in a loss of blood sugar control, as well as a lifelong dependence on insulin injections.

Dr. Pesenacker’s initial research used a test to observe Treg health in ustekinumab (a manufactured human antibody against naturally occurring proteins that affect the immune system and immune-mediated inflammatory disorders) therapy. She performed Treg gene signature measures on the samples collected from the ustekinumab phase I/II trial and developed an algorithm to predict which patients had a rapid versus a slow decline in response to treatment. More recently, she optimized a way of employing a gene modification technology called CRISPR for the engineering of primary human cells in order to study the function of specific integral proteins involved in cell signalling in health and T1D.

The development of this Treg gene signature marks a major achievement in research and could be a step towards a robust biomarker of immune status in T1D. Testing this biomarker across multiple future clinical studies may also lead to the advancement of universal algorithms that could be applied to identify rapid vs slow decliners, monitor T1D over time, and/or select individuals likely to respond to immunotherapy.

One of two promising researchers to receive an Eli Lilly Canada post-doctoral fellowship grant from the JDRF Canadian Clinical Trial Network (JDRF CCTN) in 2017, Dr. Pesenacker has learned how to establish and run translational immunology studies under the mentorship of Dr. Megan Levings and by working closely with key clinical trial personnel at BC Diabetes, the Immune Tolerance Network and the CCTN. In 2018, Dr. Pesenacker was awarded a career development fellowship from Versus Arthritis and moved to the UCL Institute of Immunity and Transplantation (London, UK) to expand her research, develop her independent research programme and become well-versed in translating research findings into clinical trials.

JDRF is proud to support a talented young investigator like Dr. Pesenacker.

The development of encapsulation technologies to treat insulin-dependent diabetes has been at the forefront of type 1 diabetes (T1D) research in North America for many years. This is because new methods of cell delivery may offer a functional cure for people with T1D at high risk for life-threating complications.

Recently, the Center for Beta Cell Therapy in Diabetes, coordinator of an international consortium in translational medicine in diabetes, and ViaCyte Inc., a privately held regenerative medicine company, collaborated on their first European clinical trial involving human stem cell-derived implants among T1D patients.

Performed at UZ Brussel, the University Hospital of Vrije Universiteit Brussel (VUB), the pilot project saw participants receive ViaCyte’s product candidate, PEC‐Direct™, which delivers pancreatic cells in a device to individuals with severe hypoglycemic episodes, extreme changes in their glucose levels, and/or hypoglycemia unawareness. Upon maturation, these cells are designed to secrete insulin and other pancreatic hormones in response to blood glucose levels. The device not only replaces lost insulin-producing beta cells but also restores blood sugar control for T1D patients who are eligible for beta cell replacement therapy.

This work complements the clinical evaluation of PEC-Direct™ currently underway in North America. During the first phase of the European trial, implants will be evaluated for their ability to form beta (insulin-producing) cells; the second phase will examine their capacity to produce systemic levels of insulin that establish glucose control. The implantation in these first European patients is a major step in the development of cell therapies with the potential to cure T1D.

This trial, along with preclinical trials, was carried out by the Beta Cell Therapy Consortium with the support of a Horizon 2020 grant from the European Commission. The consortium is composed of clinical, industrial, and research teams at VUB, ViaCyte, San Raffaele Hospital Diabetes Research Institute in Milan, Nestlé Institute of Health Sciences in Lausanne, the University Medical Center in Leiden, and Institut du Cerveau et de la Moelle Epinière in Paris.

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

By: Justin Kozuch, Digital Marketing Communications Specialist, JDRF Canada

 

It goes without saying that social media has become the way we share snippets of our lives. Not only has it revolutionized how we get a glimpse into those of our friends and family, but it has radically changed how we learn about the world around us, how we engage with government and how we unite to make our planet a better place to live.

I’ve been a long-time advocate for using social media within an organization and I firmly believe these platforms are well-suited for raising awareness about important issues, rallying around a particular cause and creating opportunities to drive change—a key part of my role here at JDRF Canada.

Inspired in part by some of the amazing content I’ve seen posted on social media by our fans, I wanted to share some of my knowledge and inspire you with a few easy-to-execute ideas that I hope will help you meet your fundraising goals.

 

Tell a Story

Storytelling is an act as old as time. For thousands of years, our ancestors told stories and passed down knowledge about how to hunt for food, build tools and make clothing. No matter where we’re from, the language we speak or what our background is, stories are something we all understand. They’re part of our DNA.

The most effective storytelling happens when we tap into the emotions of our audience. Stories that highlight a personal struggle, something we’re passionate about, a cause or ideal that we believe in, or something that inspires us to stand up and speak out is the type that will encourage others to rally around you and support your mission – like this one from Abby:

Think about the kinds of stories you’ve heard: the kind that inspired you, moved you, or have given you cause to think about the impact you have on the world—and write your own.

Social Media Tip #1: Use Instagram Stories to share one on the importance of funding type 1 diabetes (T1D) research and how it plays a role in finding a cure for the disease, similar to what Rina did here.

 

Nominate a Friend

It would be difficult to argue that the Ice Bucket Challenge was a smashing success. But why did it work? It comes down to one simple factor: It was easy. It was an act that could be easily replicated, easily shared and did not cost much money. Layer in social media and you’ve got a recipe for success.

Social Media Tip #2: Take on a 24-hour challenge and upon completion, nominate three friends to participate like our Central Canada Regional Director, Shannon Carkner, did here.

 

Be Your Own News Outlet

Just because your name isn’t Tom Brokaw (unless it is), doesn’t mean you can’t interview a politician and ask them to support legislation that increases funding for those living with T1D or talk about the importance of medical devices such as CGM’s:

The great thing about social media is that we all have a voice and that our individual voices matter—and that your voice can make a difference.

Social Media Tip #3: Use Instagram to answer questions about what life is like living with T1D like Max did on World Diabetes Day.

 

Incentivize Giving

Kickstarter perfected this model by providing the visionaries behind creative projects with the tools to give supporters various incentives in exchange for financial support of their projects.

To inspire people to donate to your Walk team, give away incentives or hold a contest to encourage donations. For example, you could ask for a $100 donation and in exchange, offer to babysit while they go out for a date night or to watch playoff hockey at a local sports bar.

Social Media Tip #4: Hold a 48-hour donation drive and for every donation received at/or above a certain limit, commit to doing something for a donor, like mowing their lawn or raking their leaves.

 

Highlight Milestones

Milestones are a great way to show progress, share your goals or even readjust them if you’re successful. We’ve seen excellent results when we’ve talked about our organization’s fundraising goals and successes.

Social Media Tip #5: Tell people when you’ve reached your fundraising goal. If there’s still time left over until Walk day, go double or nothing and increase your fundraising limit, like our friend Alyscia did last summer.

 

Some additional tips:

• Include the link to your fundraising page in your posts and make it easy to find. Put it in the bio section of your social media profile and if you use email regularly, add it to your email signature.
• Use hashtags to help others find your content, gain additional followers and be part of the conversation—especially on Twitter and Instagram.
• Mix up your content by using images and video to keep things interesting and engaging.
• Tag us (JDRF Canada on Facebook and @jdrf_canada on Twitter and Instagram) in your fundraising posts on social media—and make sure to add the #SunLifeWalk #JDRFWalk hashtags so that we can see your post.
• Don’t forget to say thank you to your donors!

 

Have you come across a great fundraising idea? How are you using social media to raise money for T1D research? Tell us on our Facebook page, tweet at us or send us a message on Instagram—we’d love to hear what’s working for you!

Guest blog post by Nguyet (Na) Nguyen and Sarah Strong, Students, Memorial University of Newfoundland, Faculty of Medicine

 

 

The Provincial Day of Action is a yearly event where medical students identify a gap in the healthcare system and approach our provincial government with an “ask” to help fix that gap. This year, as students in the Faculty of Medicine at Memorial University of Newfoundland, we asked the provincial government to remove the age restrictions in place for financial coverage of insulin pumps for people living with type 1 diabetes (T1D) in Newfoundland and Labrador. Currently, the cost of insulin pumps is only covered up to the age of 25. Patients must then cover the costs themselves which can total over $6300 a year.

In November 2018, we began the process of deciding what topic would be the focus of the Provincial Day of Action. A public survey was created and shared with residents of Newfoundland and Labrador via social media, giving them the opportunity to suggest health inequities they believe existed in our province.With careful consideration of all suggestions expanding insulin pump coverage was felt to be an actionable and attainable topic for this year’s campaign.

Given the high rate of T1D in Newfoundland and Labrador, and that the current age limits on insulin pump coverage were put into place in 2010, our group felt that it was time for the program to be reassessed to determine if it was meeting the healthcare needs of Newfoundlanders and Labradorians.

In January 2019, a group of 20 students formed a Provincial Day of Action Working Group. We divided ourselves into different teams: research, community partnerships, communications and logistics planning.

Research team members looked at the current picture of type 1 diabetes in Newfoundland and Labrador, benefits of the insulin pump, and the financial aspects of our “ask”. This information was used during our training day for medical students, and was compiled into an information primer that students brought to meetings with Members of the House of Assembly and used to guide their conversations.

The communication team provided social media support, promoting the Provincial Day of Action and also worked to engage the public. They helped share a letter template with residents who were interested in supporting our advocacy effort by writing to their own Member of the House of Assembly.

Community partnerships team members connected with members of the T1Dcommunity in our province and across Canada. This included diabetes nurse educators, endocrinologists, provincial and national organizations and Newfoundlanders and Labradorians either living with type 1 diabetes or with a loved ones with T1D.

The logistics planning teams organized both the Training Day and the Provincial Day of Action. The Training Day was an organized session where medical students interested in meeting with Members of the House of Assembly and advocating for expanded insulin pump coverage received training and information from community connections, such as nurse educators and endocrinologists, about type 1 diabetes and insulin pumps.

This year’s meetings took place between March 16^th  -26^th, 2019, where approximately 50 first and second year medical students met with a total of 26 Members of the House of Assembly of different political parties to discuss insulin pump coverage in Newfoundland and Labrador with the hopes of gaining their support.

Our group was excited that Members of the House of Assembly were receptive to meeting with students and that many positive discussions were had around insulin pump coverage. In addition, the campaign had a lot of public support from residents, who shared their personal stories and wrote letters to their representatives.

Newfoundland and Labrador’s Budget for 2019 was released on April 16^th, 2019, and funding to lift the age cap for those currently enrolled in the insulin pump program was reported! This will ensure continued coverage for individuals who currently receive insulin pump coverage. Unfortunately, this expansion does not include individuals who have already aged out of the program, and whether the provincial insulin pump program can be expanded in the future remains to be seen, and understandably relies on the province returning to surplus.

While insulin pump coverage was not expanded to include all eligible type 1 diabetics, we think the elimination of the age cap for individuals currently enrolled in the program is a step in the right direction! We are currently preparing a public online petition to keep the conversation going about expanding insulin pump coverage. We look forward to continuing our advocacy efforts and plan to create an open letter to the Premier and the Medical Officer of Health to reinforce the importance of covering insulin pumps for all those living with T1D in Newfoundland and Labrador.

Follow these students’ lead and join the JDRF campaign to remove all age restrictions on provincial insulin pump programs. Take action today and send a letter to your provincial representative.

 

While the 2019 Canadian budget was eagerly anticipated by all Canadians, there were items that directly impacted members of the type 1 diabetes (T1D) community. So what does the 2019 federal budget mean for you?

 

The Disability Tax Credit Campaign Continues

In 2017, the Disability Tax Credit (DTC) was restored for more than one thousand adults living with T1D but JDRF continued to push for changes that would eliminate the fear that members of the T1D community could lose their benefits. This push came in the form of our 2019 Pre-Budget submission and one of these was announced as part of the 2019 budget.

The Canadian government announced that they would end the clawback of government contributions to Registered Disability Savings Plans in the event that Disability Tax Credit eligibility is lost. Losing one’s DTC status doesn’t indicate a change in actual circumstances, and the same financial challenges and need for long-term financial security may still apply. While the community waits to learn more information about any restrictions that might apply to how a beneficiary can access these amounts, it’s encouraging to see this as part of the 2019 budget.

But the fight continues. More Canadians should qualify for the DTC and carb counting should be considered an eligible activity when qualifying for the DTC. In addition, the number of hours Canadians with T1D must spend on eligible activities should be reduced from 14 hours to 10 hours.

 

Stem Cell Network

The 2019 budget noted that the Stem Cell Network will receive funding of $18 million over three years, starting in 2019. This is big news for the advancement of regenerative medicine and the opportunities stem cell research creates for the T1D community. The Stem Cell Network has been supporting a clinical trial led by Dr. James Shapiro, the University of Alberta surgeon who led the team on the Edmonton Protocol.  Dr. Shapiro’s trial tests whether an implantable device can allow a successful and long-term graft of insulin producing beta cells, potentially leading to a functional recovery for thousands of Canadians living with T1D.

 

Pharmacare

Every single member of the T1D community knows that coverage for the cost of insulin would alleviate many stresses. Thanks to the voices of Advocates across the country, the Advisory Council on the Implementation of National Pharmacare published their interim report making the following recommendations, which the federal government committed to implementing in the 2019 budget:

 

• The creation of the Canadian Drug Agency to negotiate better prescription drug prices on behalf of Canadians
• A national strategy for high-cost drugs for rare diseases to help patients have better and more consistent coverage for their treatments
• The development of a national formulary to create a consistent approach to drug formulary listing across the country. This recommendation is a step towards insulin coverage for all.

 

 

Ashlynn O’Hara is 10 years old, lives with type 1 diabetes (T1D), and is taking her fight for affordable continuous glucose monitors (CGM) to the big leagues.

In recent months, Ashlynn has met with various members of the Alberta government, shared her story and asked some tough questions on behalf of the T1D community. To kick off her advocacy efforts she sent JDRF’s #AccessforAll letter to her local MLA which led to meeting with him. He was so blown away by what she said that he set up a meeting between Ashlynn and the UCP Health Critic for the following week. But then an election was called, everyone became a candidate again and her meeting was cancelled.

“Our meeting was cancelled but then I asked my mom, ‘why don’t we talk to all candidates?’ so that’s why we’ve been attending candidate forums”, says Ashlynn. Ashlynn pre-submits questions for the candidates and at two of the forums they recently attended, a question including type 1 diabetes was part of the panel discussion, “at last night’s forum, they asked the candidates ‘what is each party’s position on coming up with strategies to help the T1D community?’. But nobody had an answer, and the candidates said that they haven’t heard about a strategy so they just passed on the question”. But Ashlynn and the rest of the T1D community wanted an answer so she approached each candidate after the discussion and said “you have to go to your decision makers and ask for an answer to this”.

There’s no denying that Ashlynn is a passionate and smart young person, but what is it that makes her so motivated to win this fight for affordable and accessible CGMs? “In September of 2018, Ashlynn had hit a breaking point with her blood glucose numbers so her doctor had said that Ashlynn was a good candidate for the CGM,” says Tammie O’Hara, Ashlynn’s mom. “When she was considering getting the CGM Ashlynn released a short video on her social media about how these monitors are not affordable or accessible, and this was a hard time for us because she was feeling very torn about getting one for herself. Ashlynn was one of three kids with T1D in her school and if Ashlynn got a CGM that meant that two of them would have one and the other wouldn’t. It was a really hard decision for Ashlynn because ‘it just isn’t fair’.”

When Ashlynn made the decision to get a CGM and it arrived, the mixed feelings continued, “She knew that her body needed the CGM and she was excited because she knew the impact it would have on her life but she was sad that her classmate would be left behind,” says Tammie. And having the CGM improved Ashlynn’s quality of life in ways one couldn’t have imagined, “it took so much stress off of my mind. It helps me get some sleep and my grades in school have improved. I’m able to focus on what is being taught, on my projects and reading,” says Ashlynn. And the impact of the CGM was immediate, “we knew that Ashlynn was under stress but we didn’t realize how much stress she was under because she had to monitor her blood sugar all of the time at school. But from day one, we could see a weight lifted off of her,” says Tammie. “Her teacher said that Ashlynn was blossoming into a whole new kid because of this monitor. She’s participating in everything, even gym, which used to make her nervous because exercise tends to drop her [blood sugar] quite quickly. That’s when I realized that these CGMs are life-changing, there’s no other way to put it.”

So what does Ashlynn want her advocacy work in the #AccessforAll campaign to lead to? “I want to see that CGMs are actually covered by the government, and recognized not just by provincial governments but also the federal government. I want them to know about the importance of monitoring and how it can help reduce the side effects that come along with T1D.”

Join Ashlynn in the fight for affordable life-changing technologies by meeting, calling or writing to your provincial or territorial representative to urge them to support reimbursement for these technologies. Your story, like Ashlynn’s, will help them understand how valuable these technologies can be in managing type 1 diabetes.

Ashlynn’s Advocacy Tip: How to prepare to share your story and speak about #AccessforAll

“I write a letter with point form notes on the messages that I want to deliver to whoever I’m speaking with. My letter includes notes about my story and the following items:

• I’m working hard on a campaign called Access for All to make CGMs affordable for all.
• Managing my diabetes is really important and I need all of the help I can get, including the CGM.
• Diabetes is an expensive disease and CGMs remain out of reach for a lot of families. I’m looking to change this so kids like me can live a longer and healthier life.
• Will you work with me? The time to make CGMs affordable is now.

There is so much to say about T1D and this campaign so having a letter like this is helpful. It makes me confident about sharing my message and informing people about type 1 diabetes, and usually results in people asking me more questions.”

 

For more support with preparing to have a face-to-face meeting read our five step guide to briefing elected officials.

Check out Ashlynn’s story here and follow her on Facebook and Instagram to support her on her journey to bring these life-changing technologies to all members of the T1D community.

By Abidah Shamji, National Manager of Government Relations, JDRF Canada

In partnership with Advocates from the type 1 diabetes (T1D) community, we put forward one important recommendation for this year’s provincial budget: that the Government provide access to advanced glucose monitoring technologies such as continuous glucose monitoros (CGMs) and flash glucose monitors (FGMs) to patients and families living with type 1 diabetes. Such measure would not only drastically improve their quality of life and health, but also reduce the complications of the disease leading to increased costs to our health care system.

Well, the budget came out last week with no commitment to fund CGMs or FGMs. This was not entirely unexpected as we have only just recently launched the Access for All campaign so a quick win in Budget 2019 was always a bit of a long shot. After hearing the T1D community tell us how important this issue is for them, we launched this campaign just over a month ago to encourage the government to add CGMs and FGMs to coverage programs in Ontario.

The results of this budget mean that your voice is now more important than ever. You can immediately support this initiative by writing, calling or meeting with your provincial or territorial representative by simply clicking here.

The good news is, there is still time, and we are not giving up. Armed with data including the Ontario Health Technology Assessment Committee’s (OHTAC) Report and JDRF patient advocates, we are continuing to aggressively push this issue forward.

Over the next few months, we will be:

• Planning town halls in 3-4 Ontario communities
• Meeting with those responsible for deciding which medical devices get covered in Ontario
• Targeting MPPs to continue to talk about the impact of CGMs and FGMs on patients
• Targeting private insurance companies who don’t currently cover advanced glucose monitoring technologies as standard in their plans
• Providing you with an online toolkit so you can advocate to your own insurer/employer effectively

Were you disappointed that type 1 diabetes was not included in the 2019 Ontario Budget? Just five minutes of action will help put more pressure on decision makers and advocate for better benefits for the T1D community. Please meet, call or write your provincial representative and urge them to support reimbursement for these technologies.

By Patrick Tohill, Director of Government Relations | JDRF Canada

 

 

In the five short weeks since we launched JDRF’s Access for All campaign across Canada  we’ve had nearly a dozen meetings with Ontario Members of Provincial Parliament and their staff, including a short but important meeting with the Honourable Christine Elliott, Deputy Premier and Minister of Health and Long-term Care.

It’s been my pleasure and privilege to lobby alongside our JDRF Advocates in these meetings with one simple message: All Canadians with type 1 diabetes (T1D) of all ages should have access to affordable advanced glucose monitoring technologies to help better manage their diabetes.

My own briefings tend to focus on facts, evidence and costs. However, hearing first-hand from children and adults who live with T1D and from parents is a powerfully moving experience. It makes the case for funding these technologies that much more impactful.

 

Anne Pettigrew, a phenomenal young Advocate who joined me at Queen’s Park and who is wise beyond her 14 years, takes this to a whole new level, explaining to every politician we meet that the difference between advanced glucose monitoring devices and traditional methods is like the difference between a photograph and a video. A photo can only tell you what’s happening at one moment in time. A video not only gives you a more complete picture, it might even help you predict that the man you see standing beside the pool is about to fall in.

Traditional “fingerstick” blood tests are like photos. They give you your blood sugar number at one particular moment. Continuous glucose monitors (CGM) and flash glucose monitors (FGM) are like video. They tell you what your blood sugar is doing right now, what it’s been doing over the past few hours, whether it’s going up or down and how quickly. Having this information can help inform your decision-making so you can make changes to insulin dosage, diet and activity that will help you stay in range for longer time.

In other words, these devices represent an evolution in the treatment of type 1 diabetes, but they’re also expensive. Our message to Ontario Members of Provincial Parliament is that these technologies represent the new standard of treatment for T1D but, without the government’s help, many won’t be able to afford it.

Having someone with the lived experience of diabetes relate their struggles with maintaining good blood glucose to political representatives and get across just how life-changing, in some cases life-saving, CGM and FGM devices can be, changes the whole conversation.

Anne and her mom Cathy will tell you that Anne’s CGM helped save her life when she experienced a severe hypoglycemic event while home alone with her younger brother. Being able to remotely see what Anne’s numbers were gave her parents the information and confidence to treat this particular low more aggressively, instructing her to take eight glucose tabs, something she’d never done before.

It’s at once thrilling and humbling for someone like me who works in government and stakeholder relations to lobby alongside our Advocates: thrilling because it feels like we’re already making a real and immediate impact and humbling because I know I’ll never be anywhere near as good an advocate for type 1 diabetes as someone who lives with T1D and their family.

I may have a few tips to help Advocates improve their presentation, I may be able to answer some of the difficult questions or manage situations where we don’t have the answers, but nothing beats an Advocate bravely sharing their story and telling a politician just how important access to diabetes technology is to properly manage this disease.

If you’re reading this and have yet to send a letter to your provincial representative, please do so today—especially if you have T1D or have a family member who lives with the disease. But even if you don’t, take action anyway. You’re still a constituent and politicians are moved to act on the issues that their constituents care about the most.

A single letter written to the right politician in the right way at the right time can make all the difference in an advocacy campaign. A thousand letters or more can make an even bigger impact. And it starts with you.

A big thank you to our volunteer Advocates who joined us at Queen’s Park and shared their stories in the hopes of inspiring change; John, Alan, Nancy, Kate, Dan, Cathy and especially Anne. You can read about Anne’s efforts in her own words at her blog That Stupid Pancreas!

This month, twenty years ago, a pioneering clinical trial in Alberta marked a major advancement in islet transplantation for the treatment of type 1 diabetes (T1D).

On March 11, 1999, the Edmonton Protocol – a new method of transplanting pancreatic cells to treat T1D – saw its first participant receive a transfer of islet cells from a donated pancreas into their liver at the University of Alberta. The production of insulin by the donor’s islet cells helped the transplant recipient regain control of his blood sugar levels, thereby eliminating or greatly reducing the need for insulin injections. According to an article published in The New England Journal of Medicine on July 27, 2000, the seven people who took part in the study became insulin-independent for the 12 months following the procedure.

In collaboration with the Medical Research Council of Canada, JDRF supported the preclinical studies that led to the Edmonton Protocol. It also established nine JDRF Human Islet Distribution Programs in 1998, including the University of Alberta, which provided the islet cells for the procedure in Edmonton. Dr. James Shapiro, a JDRF-funded investigator and a multi-organ transplant surgeon at the institution, led the team that introduced the Edmonton Protocol and optimized the medication given with islet transplants.

Today there is a growing demand for organ donors. In order to succeed, a minimum of 300,000 cells derived from the same pancreas are needed for a transplant. A donated pancreas contains about one million islet cells and researchers are currently able to isolate up to half of them, making more people eligible for the procedure.

“The Edmonton Protocol was a milestone achievement that significantly changed the T1D landscape,” says Dave Prowten, president and CEO of JDRF Canada. “The past 20 years have seen more people benefitting from islet transplantation and JDRF is proud to invest in this promising initiative that is bringing us one step closer to a cure.”

Despite the lifelong need for immunosuppressive drugs to prevent graft rejection, islet transplantation has been shown to greatly improve the quality of life for individuals with a severe form of T1D, while freeing them from multiple daily insulin shots that can lead to other problems, such as hypoglycemia (low blood sugar). As a result of new and improved methods to isolate islet cells, transplantation rates are expected to grow in the future until a cure for the disease is found.

Today JDRF continues to build on the Edmonton Protocol and Dr. Shapiro’s work. We are not only funding beta cell replacement therapy research, but also exploring the genetic modifications of transplantable stem cells and scaffolding technologies (encapsulation) to improve islet graft outcomes among people without the need for immunosuppressive drugs.

To learn more about beta cell therapy, click here.

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