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T1International Year in Review: 2020

By T1International

Team Photo 2020
Top Stats from T1International’s 2020
  • 1 major win: World Health Organization now has a specific focus on diabetes and insulin access
  • 2 billboards calling for lower insulin prices in Indianapolis, home of Eli Lilly
  • 5 large group in-depth global advocacy trainings held
  • 10 global advocacy support refresher meetings held
  • 15+ pieces of state legislation passed through support of patient advocates
  • 30 USA Chapter trainings held
  • 33 blog posts published
  • 180 USA Chapter support meetings held
  • 346 social media posts reaching 35,000 of you to highlight hundreds of facts and issues
  • £50,000 raised through individual global donors
  • $77,000 raised through individual US-based donors

What a year we had as a community and as an organization in 2020. There were many global challenges, as always, and COVID-19 had huge impacts across the world. Below is a taste of what, thanks to our advocates and supporters, we achieved.

Advocacy Trainings & Support

Our advocacy tools and online resources continue to be accessible to anyone and mailed to those who have less regular access to the internet. Many of our resources are available in multiple languages (in 2020 we added a Swahili version of the Type 1 Diabetes Access Charter and our Advocacy Toolkit was translated into Russian!). Throughout the year, T1International supported existing Global Advocates in 10 countries and provided in-depth training to new advocates. Some of our key trainings included advocates with Diabetes LATAM in Panama, training which led to the development of an #insulin4all Chapter in Zimbabwe, and training a group of 10+ advocates in Canada with the Canada #insulin4all Chapter. Our connection with Diabetes LATAM also enabled us to release our diabetes educational booklet in Spanish.

As the challenges COVID became apparent early in the year, T1International led several Global Advocacy and COVID-19 community calls to provide support and touch base on advocacy projects. Advocates jointly posted a blog on the T1International website which led to a publication (opens in a new tab) in the BMJ.

In August, we started a comprehensive review of our Global Advocacy tools and training. The work included questionnaires and interviews with various Global Advocates and partners to gather their feedback related to T1International training, tools and advocacy in their country. Advocates reported having gained many advocacy skills and a sense of motivation and connection to the global diabetes community from their participation with T1International. They expressed a desire for more connection with other global advocates, including regular meetings and idea exchange opportunities. We identified needs for resources related to research, network-building, and fundraising. By the conclusion of the work in early 2021, we will finalize guided templates for SMART goals and action plan creation, along with evaluation tools that include checklists for advocates and T1International staff to track advocacy progress. Additionally, standard operating procedures for T1International staff will outline regular meeting and refresher training schedules and reminders, along with the process for gathering ongoing progress updates and feedback from advocates.

Although we could not gather in person in September, as is tradition, we held a virtual #insulin4all Workshop which was accessible to a wider audience and covered a variety of global and US-focused issues, including patents, divestment campaigns, civil disobedience, racial inequities in diabetes care, storytelling, and so much more. We had about 380 registrants, with 82.6% of attendees answering that they were very satisfied with the workshop. Recorded sessions are available on our YouTube channel (opens in a new tab).

In addition to this main event, many resources, trainings and support tools were offered to our 37 Chapter Leaders, Leads, and Advocates involved in their Chapters, including resources on type 1 diabetes, the Alec Smith bill, California’s SB 852 Public Production of Medicine, and our Federal and Legislative working groups, to name a few.

We continue to work in strong partnership with The Sonia Nabeta Foundation (opens in a new tab) in our joint Pamoja program. The program supports 25 young advocates in their efforts of strengthening health systems for people living with type 1 diabetes in Ghana, Uganda, Tanzania, Nigeria, South Africa and Kenya. Like our #insulin4all Workshop, our Pamoja workshop was also held online and we celebrated successes and discussed challenges from 2020. The Pamojan advocates worked on getting a policy adopted that would ensure no child with diabetes is denied attendance at school, and they are determined to make that happen in 2021 and beyond.

Legislation & High-Level Advocacy

T1International kicked off our year of advocacy by publishing a statement on Brexit and the potential negative impacts on the National Health Service in the UK. We continue to work with partners like Just Treatment (opens in a new tab) and advocates around the world to fight for preserving and supporting the National Health Service in the UK, which ensures all patients with diabetes have access to the essentials. Our Chair of Trustees, Fiona, and her daughter with diabetes were featured (opens in a new tab) as part of Just Treatment’s campaign to halt the US/UK trade deal.

We also began work on our 2020 Out of Pocket Cost survey and collaborated with Karolinska Institutet (opens in a new tab) to refine the survey and build on our 2018 data. These large-scale findings put data behind the stories we hear all too often about people with diabetes struggling and rationing their insulin and supplies.

Advocacy in the USA led to the Utah Chapter celebrating the Insulin Access Amendments being signed into law, and thanks to similar tireless efforts, the Minnesota Chapter celebrated the Alec Smith Bill being signed into law. So many of our Chapters were able to push the needle locally to save and improve lives, whether through the passage of legislation or building a community that is dedicated to fighting for their rights.

On a global scale, T1International was actively involved with groups like ACCISS and MSF Access to coordinate the planning and execution of an event about a World Health Assembly Resolution on insulin access. Our Global Advocate, Cyrine Farhat from Lebanon, represented T1International and patients with diabetes at the World Health Assembly virtual forum on Access to Insulin. After the devastating explosion in Beirut, Cyrine’s voice was amplified by our team as she supported people with diabetes in urgent need. Another Global Advocate, Daniela Rojas from Costa Rica, represented T1International and patients by sharing Latin America’s Insulin Access Needs at the World Health Organization Workshop. T1International was also part of the workshop. Elizabeth Pfiester spoke on the final day, encouraging the WHO to take further action and ensure more patients are represented throughout the whole process. We have also been part of the stakeholder consultations for the WHO’s Diabetes Compact (opens in a new tab).

Later in the year we secured a pro bono partner to file an amicus brief on PhRMA’s lawsuit to overturn the Alec Smith Bill, working with National Health Law Program (opens in a new tab) to gather patient experiences in consultation with the Minnesota #insulin4all Chapter. We filed the amicus brief on November 5th.

To uplift patient voices around the world, we amplified issues related to lack of insulin in Iran, which was covered by (opens in a new tab) the Center for Infectious Disease Research and Policy. We also supported patient storytelling to fight to preserve the Affordable Care Act in the USA. At the end of 2020, our Out Of Pocket cost survey closed with 1070 responses from 64 countries. Initial data show that COVID-19 has had a significant impact on patients with diabetes and their ability to access insulin and supplies.

Events & Campaigns

The year also began with T1International’s French Chapter holding an #insulin4all Demonstration outside Sanofi in Paris.

February was an incredibly busy month. #insulin4all advocates and Chapter Leaders attended the State of the Union Address. We launched our Communities of Color Campaign, with a subsequent Tweet Chat (opens in a new tab) in March and related posts and content throughout the year. T1International attended a meeting put on by the Democracy Collaborative about public production of pharmaceuticals in New York city, providing some of the only patient representation at the meeting. While in NY, we also hosted an event at the MSF offices for the New York, New Jersey and Connecticut Chapters. The legislative guide, created with Public Citizen (opens in a new tab), was launched shortly after, and has supported Chapters in thinking about different types of state legislation to pursue.

Along with our #insulin4all Virtual workshop, T1International’s Digital Demonstration was held online and focused on ‘One Decision’, noting that people with diabetes make up to 180 extra decisions per day but that we are only asking The Big Three to make one decision: to lower their list price. The Digital Demonstration included a billboard of Nicole Smith-Holt and the loss of her son due to high insulin prices and rationing.

T1International’s 2020 theme for National Diabetes Awareness Month and World Diabetes Day 2020 was Change Through Creativity: Advocates and Allies Artistically Advancing #insulin4all, where the artistic talents and contributions of the #insulin4all community were highlighted to feature how advocates utilize art to help them in their advocacy efforts. On World Diabetes Day (November 14th), T1International did an Instagram takeover of Jonathan Van Ness’s Getting Curious page as a follow up to our podcast episode (opens in a new tab). Rounding out the year, the Canada #insulin4all Chapter shared about the launch of their freeinsulin100 campaign.

Media

Media coverage of the movement continued to be strong in 2020. Below are some of T1International’s media highlights.

Organisational Growth

In addition to tireless work and advocacy by our volunteer advocates, we made the huge transition from a tiny, two person team to an eight (and growing) person team. After publicly launching the US entity (T1International USA) in April, the T1International Boards of Trustees were divided into US and Global Boards.

In June through August we hired and onboarded our National Director, Advocacy Manager, Policy Manager, and Development Coordinator. We established and implemented internal processes and procedures, including standard operating procedures, human resources tools, and internal communications guidelines. As a highlight, we built and implemented Ethical Fundraising and Donations policy, including a risk assessment.

In September, we began recruitment of additional board members, focusing on adding patients with type 1 diabetes, especially patients of color and those from marginalized or less-represented groups. We also engaged Colibri Collaborative (opens in a new tab) to support equity and values work within T1International, which will go full steam ahead in 2021.

Finally, we recruited and confirmed seven new board members, six of whom are people with diabetes. The new Board members joined this month.

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