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. 

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.

JDRF ambassador Sébastien Sasseville rides a bicycle across Canada in support of Access For All

On June 28th, 2021 endurance athlete and JDRF ambassador Sébastien Sasseville took on his greatest challenge yet. A commitment to ride a bicycle across Canada in support of universal access to diabetes devices for all Canadians living with the disease.

Sébastien was diagnosed with Type 1 diabetes in 2002. He vowed that T1D would never keep him from living life to the fullest, and today his story is a testament to how challenges can be turned into opportunities. These opportunities have included running across Canada, climbing Mt Everest and participating in a number of the world’s hardest endurance races.

This journey was for a cause extremely close to Sebastien’s heart.

“I’ve been using an insulin pump and CGM system for years and it’s had a tremendous impact on my life and diabetes management – these devices are life changing, nothing short of that. They enable me to do what I do,” says Sébastien.

“When I think about not everyone with diabetes having access to the device of their choice, it’s heartbreaking and really – it’s not fair – nobody chooses T1D. These tools that I use today were the things I was dreaming about when I first diagnosed. A closed loop hybrid was like something out of a sci fi movie 20 years ago, I couldn’t even imagine it – and now it’s here today, and I use it. And I want to help JDRF with their advocacy work to ensure that everyone with T1D who could benefit from this technology can have access to them.

The provincial governments of Quebec, Saskatchewan and British Columbia recently announced they will join Yukon in offering public coverage of CGM systems under provincial or territorial health plans. In addition, Prince Edward Island and Manitoba have also recently announced plans for funding based on their 2021 budget platforms.

“These are significant announcements impacting the more than 300,000 children and adults living with type 1 diabetes in Canada, but the coverage for both insulin pumps and for advanced glucose monitoring systems varies greatly depending on where you live in Canada, and even by age,” said Dave Prowten, President and CEO of JDRF Canada.

“We applaud Sébastien’s desire to bring attention for the need for equitable access to life-changing technology for all Canadians living with type 1 diabetes, and we encourage people to support Access For All by sending a letter to their provincial or territorial representative at jdrf.ca/accessforall.

Sébastien also wanted to highlight how hard diabetes management is even with these devices. That it makes life easier, but not easy. Even with advanced technology, there is still a lot of work involved with day-to-day management. He worries that people may see the athletic endurance feats he accomplishes without realizing how much effort is involved in managing his T1D.

I truly am not a natural athlete – my journey is not about winning medals. I’ve never won anything or even been on the podium. My message is really about ‘hey, this is not easy, there are great tools available, and they should be available to all’ – and then figuring out what works for you to make tomorrow a little bit better than today. My diabetes management is not perfect – I have highs and lows like everyone. I manage as well as I can with the exercise – I am proud that I can say I can keep it under control with years of experience and experimentation. But it’s not any easier for me. It’s not easy for anyone and that’s why it’s so important that everyone has access to the best tools for their own management.”

“This one was so much harder. I’ve never suffered this much. Including Everest. This was by far the toughest thing I’ve ever done, because of the intention of going fast. The real story was can this be done in under two weeks. What happens when you ride 400 km a day with no days off and almost no recovery time. From a diabetes management perspective, everything was new. It was trial and error, as the training doesn’t always translate to real life. The high temps (45 degrees Celsius), the difficult conditions; these were things I did not expect.”

Sébastien finished his journey in just over two weeks and was followed by a documentary crew who will be putting together a video to be released later in the summer.

“I feel I learned through the challenges, and it’s made me even more resolute to continue to use my platform to help others living with diabetes,” he says.

As for raising awareness for Access For All, Sebastien says, “I think I helped, but credit to the employees and advocates – just everyone at JDRF who has been advocating for years. These campaigns are successful over years by making sustained noise over time to get into the ears of the right people. I know we made a lot of noise on social media. I hope I helped this cause.”

Sebastien without a doubt contributed and we could not be more grateful. JDRF thanks Sebastien, his team and his sponsors Dexcom Canada and Tandem Diabetes Care for his incredible efforts and achievement and commitment to ensuring access to diabetes devices to any Canadian who could benefit from it.

Follow his journeys at: instagram.com/sebinspires


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

Two wins for Continuous Glucose Monitoring (CGM) devices in Quebec and British Columbia

Access for All was launched in 2019 and has already driven major change. We are fortunate to have some of the most powerful young voices in the country advocating for our mission. These dedicated individuals have rallied communities across the country, and now several provinces and territories are in the process of revisiting their coverage and considering expanded access. 

Diabetes devices are not a luxury, they are lifesaving pieces of equipment that help people living with T1D more closely monitor their blood glucose levels, helping to prevent hypo and hyperglycemic episodes and hospital visits. 

‘Paying out of pocket is beyond what I can afford. I don’t consider my son’s CGM an ‘optional’ medical device…I’ll do whatever I need to do, and I know I’m not alone in this,’ says Nadine, parent of a child with T1D. 

JDRF is pleased to announce that two more provinces recently added coverage options for continuous glucose monitors (CGM) over the past month, a great step forward in our goal of Access For All across the country. 

On May 26, 2021, the Régie de l’Assurance Maladie du Quebec or RAMQ announced that it would start providing coverage of the Dexcom G6 CGM for people living with type 1 diabetes (T1D), age two years or older. 

This announcement marks a significant accomplishment in increasing access to life changing technology used in the management of T1D  for people in the province, as they will now also be able to order and pick up their Dexcom CGM supplies directly through their local pharmacy. 

To receive coverage for Dexcom G6 under RAMQ, an individual must meet the eligibility requirements for the Public Insurance Plan. In addition, you must be: 

  • Living with T1D  and aged 2 years or older. AND, you must have one or more of the following:  
  • Failure to achieve an appropriate glycated hemoglobin (HbA1c) value despite taking prescribed medications and testing blood sugar regularly; or 
  • Have experienced frequent episodes of hypoglycemia in the past year despite following a treatment plan; or 
  • Are not able to recognize or report symptoms of hypoglycemia. 

A local pharmacist can than provide a prescription for RAMQ approval, which initially lasts for six months and must be renewed every 12 months following. 

For more information on coverage, please visit: https://www.ramq.gouv.qc.ca/en/citizens/aid-programs/devices-compensate-a-physical-deficiency 

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In 2020, JDRF turned its attention west to British Columbia working with the community to advocate for better diabetes device coverage. This included a pre-budget submission, holding community consultations across the province, and JDRF participated alongside Diabetes Canada and Type 1 Together in public and stakeholder consultations held by BC Pharmaceutical Services in August and September. 

On June 11, 2021 British Columbia announced that it will begin covering Dexcom G6 continuous glucose monitoring (CGM) for those requiring insulin therapy aged 2+ who meet eligibility criteria. This coverage is effective as of June 11, 2021. An estimated 20,000 British Columbians are expected to qualify helping them better manage their disease. 

In BC, Dexcom G6 sensors and receivers will be fully covered for those whose family income is <$30K annually or who are on government assistance and mostly covered for everyone else. Eligibility criteria is fairly broad and the government expects some 20K people to qualify. 

British Columbia and Quebec now join Saskatchewan, Manitoba and the Yukon in covering CGM for some or all with T1D. Quebec, Ontario, Saskatchewan and the Yukon also cover Flash GM. 

JDRF is very pleased with these announcements as a step towards universal coverage of life-saving diabetes devices, but there is still work to be done for true Access For All.  

It is our hope that in the future other CGM products and the Flash GM will be covered in BC and QC – and the remaining provinces as well. Diabetes is a very individual disease that affects different patients differently. We believe in choice when it comes to treatment options, and for patients in consultation with their health care providers to decide on their best course of treatment.