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James Elliott's Reflections on His Time as a Trustee

James Elliott's Reflections on His Time as a Trustee

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James Elliott has been an instrumental part of the foundations, growth and success of T1International since it’s very early days. A fierce patient advocate and expert researcher, James has helped steer the organization in bold, principled ways. From the ongoing out-of-pocket cost survey, to pivotal media coverage, to other research and articles, to countless people educated and brought into the movement, James has been a huge part of the organization and #insulin4all movement. T1International would not be where it is today without his dedication and commitment to the cause. We could not be more grateful for his contributions and his voice, which we know he will continue to use to shout loudly for and with people with diabetes everywhere.

I have decided to step down from the board of T1International and T1International USA at the end of my term.

The genius of #insulin4all as a slogan resonated with me the first time I saw it on social media. There really should be insulin for everyone who needs it. Laws and markets, cold chain and distribution networks, patents and intellectual property – we needed to cut through all that. The technical barriers could be solved quite easily if there was sufficient political will to do so. It’s the ignorance of others and devaluation of our lives that is harder to change.

When I joined the first T1International board in 2015 I had been researching how to help people living with type 1 diabetes in low and middle income countries for a few years. I was working with Doctors Without Borders (MSF) in the Bekaa Valley of Lebanon, part of a team working on a diabetes education, self-management and support project for Syrian refugees. Their lives were brutal. The only insulin around was mix, R and NPH (i.e. Walmart insulin). When I first got there I had to fight to ensure patients were getting more than 10 syringes each month. At first, there were no test strips at all, and later, 1-2 per day. Combined with crushing poverty, a diet based on bread and potatoes, and the fact that most were living in tents during blizzard conditions - life was tough for everyone, but especially for those with diabetes.

On my off time I read the T1International blog and saw it was looking to start a formal charity. I applied to be a trustee, thinking it was a good chance to be part of an organization that was maybe not as big as MSF but perhaps more nimble, more focused on type 1 diabetes and run by patients themselves. Well, in 2015 it certainly wasn’t as big as MSF! It turned out Elizabeth was running the blog as volunteer in her off time, there was no office, and I was going to be a founding trustee.

I just dug up the application I wrote to Elizabeth. In it I said “I firmly believe that if the global situation for people living with type 1 diabetes is to change, it will be because people living with type 1 diabetes change it.”

5 years later, I still believe this.

T1International and the #insulin4all movement has grown. I won’t say larger than I ever thought it would – I knew there was an opening for an activist, human rights-based group in the type 1 diabetes space. I knew many were suffering. I knew many parts of the type 1 community had no platform in the mainstream diabetes online community, let alone mainstream media. I knew the best advocates were patients, not people speaking on behalf of patients.

Where are we now? Well the same MSF project I worked on recently published that they are now providing kids with type 1 diabetes Freestyle Libres and insulin pens with modern analogues. I guess the arguments that they didn’t want to ‘exceed the local standard of care’ are over. Insulin has become a byword in the access to medicines struggle. #insulin4all’ers are no longer a small fringe. Insulin is front and centre in the US political debate – and beyond. #insulin4all activists have been invited to the UN, to US State of the Union Addresses, and to meetings with Ministers of Health the world over. We are a force to be reckoned with.

Nevertheless, this growth was not guaranteed and took a lot of work; from the trustees, from the staff (once we had some!), and from volunteers putting in literally millions of hours of mental, physical and emotional labour.

Though I’m stepping away from the board, I’m still going to be active in my local #insulin4all Chapter here in Toronto – the birthplace of insulin and the original dream of #insulin4all, where Frederick Banting, Charles Best, James Collip, and John Macleod turned down unimaginable riches to literally give away insulin to the world. How angry they would be to see how people are profiting off their discovery if they were alive today!

I’m still going to be active on social media. I’m still going to be answering emails and direct messages. I’m still going to be sharing the spicy memes. I’m still going to be writing op-eds; and if this pandemic ever ends, I’ll be back in the streets with you all for the next #insulin4all direct action.

What gives me the most hope is the youngest generation of #insulin4all activists. They don’t need to be sold on an international approach – they know we are in this together. They don’t need to be sold on the idea that people have human rights because they are already fighting for them. They don’t fall for the lie that insulin rationing deaths are inevitable.

It is my strong hope that a fellow type 1 #insulin4all’er takes my spot on the board and help take T1International to the next level. We need strong and diverse voices at the table. We need people with energy and vision. We need to keep pushing forward, until there really is #insulin4all. And after we get there, we are going to need to fight to keep it.

With you all in solidarity,
James

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