Month: April 2019

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!