In September 2019, T1International held our first ever two-day #insulin4all workshop for USA Chapters. The purpose of the workshop was to bring Chapter Leaders together to build their skills and advocating power to push for more affordable, accessible insulin and supplies. Approximately 45 people from about 20 Chapters across the USA came to Indianapolis for the workshop, which included a third annual event outside of Eli Lilly taking the form of a vigil to honor lives lost due to rationing.
The workshop provided time for networking and mutual support, where Chapters could share success, struggles and offer each other personal support for their type 1 diabetes management and Chapter management. The event kicked off with a welcome dinner and the preview of T1International’s soon-to-be released video about the insulin price crisis and the power of patients. The dinner was also a chance to thank Charity Ambassador Nicole Smith-Holt for her tireless advocacy on behalf of her son, Alec, who was lost to rationing. She and all those who were attending the vigil to honor their loved ones were thanked for their advocacy despite their loss and pain.
On Saturday, the workshop began with keynote speaker, Gregg Gonsalves. Gregg is a friend of T1International, having recognized the power of our patient-led advocacy and being a wonderful supporter of our work. Gregg is Yale professor of both Medicine and Law, as well as an HIV/AIDS activist, and MacArthur Foundation Genius grant recipient.
Other sessions included topics delivered by Chapter Leaders and other allies of T1International and #insulin4all movement, including:
‘‘This year’s event was amazing,’’ said Nicole Smith-Holt, mother of Alec Raeshawn Smith and T1International Charity Ambassador. ‘‘Not only the workshops but also the building of relationships with so many people who travelled from all over the US to attend. It was so great to finally meet so many of the people that I have gotten to know online. It was powerful to see all of us united for this very important cause.’’
On Saturday evening, Chapter members marched from their nearby hotel to Eli Lilly’s corporate center down the road, joining others who had traveled from afar to stand outside Eli Lilly and hear nine family members speak about the loved ones they lost due to the high cost of insulin. The event was indeed powerful and emotional. Over 100 people stood together with candles while the family members spoke about their loved ones and the essential need to lower the list price of insulin immediately so that our community does not lose another life. You can see a short video compilation of the event on our YouTube channel.
Joanne Koepp, mother of Micah Fischer, said about her experience, ‘‘I was overwhelmed in a good way with the Vigil. I am glad to have had the opportunity to tell Micah's story. I felt a lot of support from everyone. I do believe T1International's mission must continue and I am in full support of everything the organization does. I am so thankful for all the hard work everyone is doing.’’
As the group finished singing a round of ‘’Amazing Grace’’, Nicole Smith-Holt carried out an independent act of civil disobedience, calling out the names of those who died and demanding justice for her son and all who were lost to corporate greed. Having met with Eli Lilly’s executives who promised to work with her to fix this problem, Nicole was clear that they have not worked with her and that she is willing to do whatever it takes to ensure the companies are held accountable. The vigil was another sign that patient power is building and only getting stronger.
‘‘The Vigil and conference were thoughtful and insightful,’’ Mindi Patterson, sister-in-law of Meaghan Patterson Carter, added. ‘‘The Vigil was hard and healing and necessary. I felt very supported and encouraged with the outpouring of respect and kindness.’’
‘‘Nicole’s civil disobedience act was powerful. Hearing Meaghan’s name called out and answered by hundreds both broke my heart and angered my humanity. Going forward I would like to see more actions, more conversations, and ultimately change that would have saved Meaghan.T1International and grassroots groups like it are the catalyst.’’
Erin Weaver, mother of Josh Wilkerson said about her experience, ‘‘When my son first died, I felt as if I was screaming voiceless at a world that had stopped for me and yet kept turning all around me. Being part of the vigil in front of Eli Lilly made me feel as if I was part of a bigger plan to fight against Big Pharma. My single voice joined with many. I was able to voice my pain and connect with others who had also walked the frustrating road of needless death. I now have hope that people with type 1 diabetes will prevail.’’
We want to thank everyone who attend our event, especially those family members who spoke through their pain to share about their loved one and demand change for the future.
Photos and the live stream video from the vigil can be found at our Facebook page:
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