Another year of challenges and outrage, another year of incredible advocacy by our T1International Community! For 2021, we’ve decided to create a Top 10 list of some of our biggest collective achievements. We know that there is so much beyond this list that our advocates and community have achieved. Every single step that was taken by each individual and group adds crucial drops to the wave of #insulin4all. It is because of you, our community of fierce and dedicated advocates, that genuine and significant long-term change is happening for people living with and impacted by diabetes.
1. Global Advocacy Network Development and Formalization
After years working with amazing Global Advocates and volunteers around the world, T1International officially formalized our Global Advocacy Network. There are now clear pathways for advocates starting out in advocacy alone, as well as for those working in a group (as Chapters) and those who already have more established organisations (as Partners). Over this past year, we have held regular meetings, made mentoring connections among network members,and developed many new resources with and for our network!
2. WHO Diabetes Compact Involvement
T1International team and advocates have been involved in supporting and developing the World Health Organization’s Diabetes Compact. In March, we shared perspectives and encouraged the WHO to meaningfully and genuinely include people living with diabetes in every aspect of their work. The hope is that tangible outcomes will come from the Compact. We continue to encourage the WHO to do this, and are part of various consultation groups to hold them accountable and work with them to improve the lives of people with diabetes.
3. Updated values and Equity Statement
The T1I Team underwent an extensive planning process involving our whole community to update our original 2014 set of values (which were also built with community input). We provided 6 opportunities for feedback (anonymous written surveys, focus groups, and meetings without staff present), incorporated feedback from over 80 people, held 30+ hours of community engagement with the T1I team, including intentional deep listening with people of colour from our community.
Photo credit: Star Tribune
4. Victory and Continued Advocacy for Alec Smith’s Law
Alec's Law — named after Alec Raeshawn Smith, who passed away in 2017 at the age of 26 after rationing his insulin — is a package of life-saving reforms intended to ensure that no person who relies on injected insulin to stay healthy will have to forego taking their medicine because of cost. In 2020, the bill became law in Minnesota. Since then, Pharmaceutical Research and Manufacturers of America (PhRMA) has filed legal challenges to try to get the Law repealed. The battle continues, with T1International advocates fighting hard to keep it intact and getting the same Law passed in other states.
5. Launch of 100 Years Campaign
In May, T1International launched a year-long campaign related to the 100 year anniversary of insulin. We worked with Miss Diabetes on a video that tells the story of insulin’s origins and the outrageous reality that 1 in 2 people still can’t access or afford their insulin today. That video has been translated into Spanish, French and Arabic. We continue to advocate around this campaign, including our 100 Voices series, so stay tuned for more!
6. Workshop 2021: Advocate, Don’t Celebrate
Our annual #insulin4all Workshop is an opportunity for advocates from around the world to learn from each other, build community, and take action in the fight for #insulin4all. In line with our 100 Years campaign, the 2021 workshop theme was Advocate, Don’t Celebrate. Over the course of two days, we hosted 15 sessions, including a session in Arabic, and provided captioning on the majority of the video content, in addition to the live otter.ai transcript of the full program.
7. 1 in 2: Digital Demonstration
In conjunction with the Workshop, T1International launched our second Digital Demonstration over a 10 day period. This year’s focus was on educating not only the diabetes community, but also the public, about the fact that one out of every two people in need of insulin can’t access or afford it. We had amazing participation from our community of advocates, and we were lucky to work again with the fantastic Miss Diabetes. She helped amplify the campaign and turned people’s photo submissions into amazing artwork which was part of a 1 in 2 video she created for us.
8. Out of Pocket Cost Survey Publication
2020 was our third iteration of T1International’s out-of-pocket cost survey, the most extensive patient-led out-of-pocket cost survey for people living with type 1 diabetes. In addition to other startling data, we confirmed that worldwide, one out of every four respondents reported having rationed their insulin at least once within the last year due to high cost. Results were published as a research paper in the Journal of Diabetes Research and Clinical Practice.
9. World Health Organization Adds Long-acting Analogues to the Essential Medicines List
T1International’s global community of people living with and affected by diabetes and their allies celebrated a monumental advocacy win as the World Health Organization (WHO) announced the addition of long-acting insulin analogues to the Model List of Essential medicines (EML). T1International staff and advocates around the world submitted testimony in large numbers in support of analogues being added to the EML.
10. What We Lost Campaign Calling for Action to Lower Drug Prices
Families United for Affordable Insulin (FUFAI), a forum led by T1International Ambassador Nicole Smith-Holt, launched a campaign to highlight what families and people impacted by diabetes have lost due to the high price of insulin. The campaign called for action to lower insulin prices, including in the Build Back Better Act. T1International’s artwork (once again, with Miss Diabetes!) was placed on digital billboards in Washington DC over a period of 10 days in November. This led to more meetings with policy-makers who are interested in making change for people with diabetes.