The impact of your story: How #AccessforAll is more successful when T1D stories are shared

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!

Lets turn type one into type none