Category: Advocacy

Access for All moves out east

Since the #AccessforAll campaign launched in 2019, we have seen considerable success with five provinces and one territory introducing new coverage for Continuous Glucose Monitors (CGM) and Flash Glucose Monitors (Flash GM). As a result, thousands of Canadians living with type 1 diabetes (T1D) have been able to access this diabetes technology, reducing individual out-of-pocket costs considerably.

For 2022, the campaign is focusing on persuading the Atlantic provinces to also begin providing this much-needed coverage. Armed with additional data from a new cost-effectiveness study, as well as successful models from other Canadian jurisdictions, we are confident that we’ll be able to welcome more good news in 2022.

We began the year with a productive meeting with the Minister of Health in Nova Scotia, The Hon. Michelle Thompson. We discussed the benefits of offering coverage for Nova Scotians living with T1D, and potentially expanding the insulin pump program to those older than 25.

Mother and daughter, and JDRF advocates Amanda and Aaliyah Williams spoke to the Minister about how important patient choice is for those living with T1D. Aaliyah, who is 14 years old, shared how she initially started using a different advanced glucose monitoring device, and soon realized that it wasn’t working for her. Luckily, because she is covered by private insurance, she was able to make the switch to the device that helps her live a healthier and safe life. She has never been happier, but not everyone is as fortunate to have private coverage, and this is why we are urging the government to step up and fill those gaps.

Leah Sutherland, a mother of a young adult living with T1D worries for her daughter who will age out of pump coverage next year. Leah’s daughter is at a critical point in her life, starting her career and not in a position to take on the cost of a pump and supplies, as they cost thousands of dollars per year. T1D does not end at 25, so Leah has been advocating tirelessly on behalf of her daughter, collecting signatures for a petition that will be presented in the legislature in the coming months.

We were also encouraged by PEI’s commitment to diabetes funding in their 2021 provincial budget. We, presented to Minister of Finance The Hon. Darlene Compton to make the case for CGM/Flash GM funding, and made a similar appeal to the Minister of Health in Newfoundland, The Hon. John Haggie.

We look forward to working with the Atlantic provinces to ensure that the T1D community is supported in their efforts to increase public coverage for insulin pumps and advanced glucose monitors (CGM and Flash GM). To support the campaign, please take a few minutes to send a message to your representative. You will be voicing important concerns in response to a new era of healthcare. 

Send a message today

A Year in Review: Why Advocacy Matters

Why advocacy matters

The driving force behind JDRF’s government relations and advocacy strategy is to help Canada’s decision-makers understand the impact of type 1 diabetes (T1D) and what needs to be done to improve the lives of those affected by the disease. We put T1D on the government agenda by actively participating in the legislative decision-making process and giving a voice to the most pressing issues facing the T1D community.


A year in review

In 2021, we set out to renew continued investments in T1D research through the JDRF-CIHR Partnership to Defeat Diabetes, expand access to the Disability Tax Credit and support the creation of a national diabetes framework. The federal government announced their commitment to all three of these issues in Budget 2021 and have set the wheels in motion for implementation.

Provincially, our Access For All campaign helped to increase access, affordability and use of advanced glucose monitoring technology with new public coverage in British Columbia, Manitoba and Saskatchewan. In addition, expansion of insulin pump programs in both Manitoba and Saskatchewan mean more people can access these devices.

None of this work would be possible without our incredible and passionate volunteers. We are always building our grassroots advocacy network to be able to achieve Access for All for even more Canadians impacted by T1D.


Federal Accomplishments

  • Government of Canada renewed funding for JDRF-CIHR Partnership to Defeat Diabetes
  • National diabetes framework aka Diabetes 360⁰, improvements to DTC also achieved in Budget ’21
  • Bringing Breakthroughs to Life: Type 1 Diabetes Research Symposium draws 228 participants including Health Canada staff, researchers, clinicians, diabetes organizations, others.


Provincial Accomplishments

  • Access For All BC Online Community Consultations drew 128 participants (including a dozen BC MLAs) – All MLAs emailed a summary video with clips from the event
  • Presentations to BC Liberal and NDP Caucus
  • Expanded access to insulin pump coverage in two provinces – MB (to age 25) & SK (to all ages)
  • New CGM coverage in four provinces – includes MB (until age 25), SK (until age 18), QC and BC (all ages but w/ eligibility criteria & only one vendor)

There is still much work to be done, and our advocacy efforts, along with those of our T1D community, will continue to focus on patient choice, universal accessibility and improving lives today.

In her own words.

JDRF Advocacy intern Anne Pettigrew on why she volunteers

November is National Diabetes Awareness Month (NDAM)! NDAM means something different to every person living with or affected by T1D. T1D is a very personal, individualized disease, and no two people with type 1 diabetes are exactly the same in terms of how they manage their diabetes, the diabetes technology they may use, or with their personal diabetes stories. We are all individual people who happen to live with the same disease. That’s why it makes sense that NDAM is meaningful to each of us in a slightly different way.

Personally, I feel like if there was ever a perfect time to get loud about T1D, it would be during the month that is devoted to raising awareness about diabetes. However, while November is a month where I get loud about T1D, it is also a month where I quietly reflect on my diabetes journey, how far I have come, and how far is still left to go. For me, NDAM is a time of pride, wonder, pondering, and grief – all at once. It is a rollercoaster of a month, and at times it can be a scary one to ride, but I look forward to it every year because it is – for me, at least – the perfect opportunity to advocate for T1D.

Advocacy is most effective when it is personalized to the advocate. This is especially true when the advocacy concerns something as individualized as T1D. For this reason, when I am talking about T1D with the intent to educate about it, I make sure to keep it very personal to me. I tell my story, speak to my personal experiences, and advocate for T1D issues that I care and know the most about.

That is not to say that any one of the several problems that people with T1D face is more important than othess. T1D is a multi-faceted, three-dimensional disease that demands so much from a person – financially, emotionally, mentally, physically, and with regards to time. – None of these demands are less worthy of being advocated for than another.

There are many equally important ways that T1D management could be made easier with increased support from the government, from communities, and from healthcare providers; but, with so many problems that need to be solved, it is too much for one advocate to take on alone. That is why advocacy needs to be personal – there are approximately 300,000 people with T1D in Canada, all of us with our own stories that deserve to be told, and all of us impacted differently by things like the price of insulin, access to medical technology, and the physical and mental burdens of living with this disease. One person cannot tell 300,000 stories in a way that will make a lasting impression; it is much more effective if we each focus on telling our own story

For example, I use a continuous glucose monitor (CGM) to make my management safer and easier, and CGMs are not covered by the provincial government in Ontario where I live. This personally impacts me and my diabetes story, so it is easy for me to get involved with JDRF’s Access for All campaign by talking to the Ontario government officials about why CGMs should be provincially funded. The trick to personalizing your advocacy is choosing a couple of key aspects of T1D to focus on and making sure those aspects are ones that are close to your heart.

A final way to make sure your advocacy is effective and impactful is to make sure you are advocating in a way that lets you stay mostly in your comfort zone – advocacy is personal to you, NDAM is personal to you, and T1D is personal to you. There is no one right way to get loud about T1D. It can be contacting your local government official to talk about T1D, posting on social media about T1D, or talking to your family and friends about T1D.

Whatever you do to mark this National Diabetes Awareness Month, however you go about your advocacy, and wherever you are in your T1D journey, JDRF is right here with you!

Anne Pettigrew, JDRF Volunteer and Advocate

Diagnosed two weeks shy of her 12th birthday.

Interested in becoming a JDRF advocate like Anne? Sign up here.

Consider joining us as we advocate for Access For All

There has been some great progress made recently towards greater access to diabetes devices and federal commitments to funding and incorporating a national diabetes strategy. These have only been achieved through collaboration with partners and other diabetes organizations and on the strength of our volunteers.

We rely on a network of passionate volunteer advocates to help Canada’s decision-makers understand the impact and severity of type 1 diabetes (T1D) and what needs to be done to improve the lives of those living with this disease.

We have a variety of volunteering opportunities and are always open to suggestions. Please visit our website to see some of the ways our volunteers help and consider joining us too.
www.jdrf.ca/get-involved/advocate

Bringing Breakthroughs to Life: Type 1 Diabetes Research Symposium

JDRF’s mission of improving lives and curing type 1 diabetes (T1D) cannot be achieved alone. It requires us to engage with stakeholders who believe in what we have set out to do and are able to help drive our mission forward – and this group includes regulators. JDRF recognizes the importance of engaging with regulators in order to to help shape and provide clear and reasonable pathways to scientific research and therapy approvals for T1D treatment and cure therapies.

That is why on February 24, 2021, JDRF was pleased to bring together Canadian regulators, researchers, industry representatives, diabetes organizations, and patients to foster dialogue, exchange knowledge and hear first-hand about new and emerging treatments for T1D, in our second research symposium, held in partnership with Health Canada.

Our first research symposium was held 2018, and as we commemorate the 100th anniversary of the discovery of insulin this year, it was fitting that we hold another. This year, the event moved to a virtual format, but with the same impact, drawing presenters and participants from across the country.

Two keynotes from Dr. Norman Rosenblum, Director of CIHR’s Institute for Nutrition, Metabolism & Diabetes, and Dr. Rémi Rabasa-Lhoret from the University of Montreal, set the stage for the interactive sessions that followed.

Dr. Rosenblum presented an overview the increasing burden of diabetes in Canada, and how our federal health funding agency is addressing diabetes during 2021 with a number of strategic funding opportunities – including some in partnership with JDRF.

Dr. Rémi Rabasa-Lhoret delivered a fascinating keynote address about COVID-19 and T1D, highlighting that people with T1D are at a higher risk of severe complications from COVID-19.

After the keynotes, there were three concurrent interactive sessions, each covering distinct themes important to the T1D community, and each featuring a speaker from Health Canada.

The first was Moving Beyond Insulin Therapy of Today, which focused on adjunctive-to-insulin therapy, closed-loop therapy, advances in beta-cell replacement and the treatment of severe hypoglycemia, highlighting nasal glucagon.

The second was Device Innovation in T1D Management, which discussed device interoperability, automated insulin delivery, medical device cybersecurity and the T1D community perspective.

The third was Immunotherapy and Biomarkers which focused on prevention of T1D, advances in development of improved biomarkers, antigen-specific therapy for T1D and regulation of insulin products.

All three sessions touched on the overarching themes of the importance of patient choice, access to devices and drugs with the potential to lessen the burden of disease management and reduce complications, and the need to accelerate research from the lab to clinical testing. The sessions were followed by panel discussions and audience Q&A that were designed to identify barriers and solutions to advance new solutions for T1D to the clinic.

The presentations at this event highlighted diverse and exciting Canadian research on emerging therapies for T1D that will be critical to all who are touched by this disease – whether it’s you, a parent, family member, doctor or researcher. 

JDRF is grateful to Health Canada for their leadership in the many areas of science and regulation that were discussed, for their collaboration in making this event possible, and their dedication to improving the lives of Canadians living with diabetes.

Thank you again to everyone who shared their time and expertise and who attended. The depth and pace of T1D research in Canada is impressive.

This event wouldn’t have been possible without the generous support of our learning partners, Medtronic, Abbott, Dexcom and Eli Lilly.

Thank you as well to Health Canada for the partnership and to the JDRF staff who worked tirelessly putting this event together.

Learn more about the presenters and watch the recordings here.