When I met Elizabeth back in 2016, at my first meeting as a Trustee of T1International, I didn't really know what to expect. It was a meeting huddled around a kitchen table in London for a fledgling charity with no income and no staff. It didn't take me long to realise that Elizabeth was completely serious about growing T1International from a heartfelt idea into a hard-hitting advocacy organisation. But there was no money and T1International was a broadly unknown entity. I think that in the early days, T1International was powered entirely by rage - rage at the injustices surrounding access to affordable insulin and supplies, at the avoidable deaths, and the indignities suffered.
Fast forward to 2023, 10 years after T1I first started as a blog. T1International has a national media presence and is the organisation people go to when they want to advocate for lower insulin prices and grow their advocacy skills. How far the organisation has come can really be seen through the Summit, where I personally got a glimpse into the knowledge, skills and advocacy strategies of some of the many thousands of advocates who now work with T1International, united in this fight. It was a fabulous and instructive programme.
In the 'Fight for Five' working group, we heard from Tinotenda Dzikiti, Pramita Jasuja, Rosa Recarey and Maham Tahir about advocacy efforts globally, to ensure that no one anywhere should have to spend more than 5% of their monthly income on insulin and supplies. Sadly, at the moment, there are far too many people being forced to spend a far greater proportion of their monthly income just to stay alive.
Quinn Nichols moderated a lively discussion with Lori Ruder, Christopher Morten, and Kaila Alston on the State Working Group and the power of grassroots advocacy, and later in the day we heard tips on how to counter pharma talking points and get our own messages across in the media from the Federal Working Group, with Sa’Ra Skipper, Ty Beringer, and Kristen Whitney-Daniels.
No one can listen to Nicole Smith-Holt and Mindi Patterson without a sense of both admiration and a heart wrenching twist of dread. In the 'Families United for Affordable Insulin' session, facilitated by Board member Dr. Harpreet Nagra, Mindi shared her story of the loss of her sister-in-law, Meaghan, to insulin rationing, and having lived every mother of a child with type 1's worst nightmare, Nicole somehow finds the strength and grace to tell her story over and over again as she advocates to make sure no one ever again goes through what she has.
The Global Advocacy Network members were a source of inspiration, with Riccardo Scatolone, Arina Parkhomova, Eleanor Callaghan, and Justice Thoronka talking about the different ways that they advocate. One thing that stood out was Justice's hard-hitting documentary, showing the story of Hawa in Sierra Leone. It was hard to watch, and listening to him talk about Sierra Leone being basically dependent upon people bringing suitcases full of inulin from the UK was especially difficult to hear.
We were happy to have Alexandra Park give an honest account of her efforts to come to terms with type 1 while making it as an actor in the USA, and her recognition of the universal struggles people with diabetes face. The day closed with a video showcasing some of the fantastic highlights of 10 years of T1International from the voices of other advocates. We have achieved so much already, but the fight isn't over.
As I listened to the amazing sessions at this year's Summit, the rage from 2016 was still there, and rightly so, but there was also so much love, inclusivity and power. Whether you like the term 'patients' or not - we debated it at the Summit - this event was full of patients taking back their power. I was proud to be part of it and continue to be proud that T1International is making such a huge global impact as a small, pharma-free charity.