People from all over the New York City metropolitan area gathered Thursday, February 8th, 2018 at the historic LGBT Center on 13th Street in Manhattan to discuss insulin access in the US.
The history of the LGBT Center — the location of the first meetings of ACT-UP (the AIDS Coalition to Unleash Power, another grassroots movement to improve the lives of patients facing an incurable illness) — represents the passion and diversity brought by those present.
The discussion-based meeting began with words of encouragement from Elizabeth Rowley, founder of T1International, joining us from the UK via video stream. She emphasized the global reach of #insulin4all, and the support and resources available to us from a global network of diabetes access advocates.
From there, an advocate visiting from Washington DC shared her experience of jumping into the #insulin4all movement. She described her journey from frustration with the diabetes online community to joining ranks with other diabetics concerned with the cost of insulin. For her, that online engagement turned into offline action. In 2017, she demonstrated in the Capitol against the repeal of the Affordable Care Act and attended Alex Azar’s Health and Human Services committee hearing wearing the same shirt she wore to the LGBT Center that night.
The shirt, a T1International tee that she had emblazoned a special message onto the back, reads “1 Vial, 2 Weeks: $350.”
The conversation then moved to why diabetics in the US face such a steep price and what we can do to fight for our right to affordable, accessible insulin. The group discussed what’s happening outside New York: the Nevada, Colorado, Vermont, and California price transparency bills. An attendee from patient advocacy groups focused on HIV and Hepatitis C, a research student, and a global access to medicine expert each shared ideas and encouragement. Attendees from Croatia and Nigeria provided a glimpse of life with diabetes in each of their home countries.
Michael Ledereich, who attended the meeting, shared some thoughts the day after the event. He said, ''A lot of the conversation was centered around introductory-level ideas, which was not a problem. It's good to have clarity and make sure everyone is on the same page. I filled some gaps in my own knowledge. We didn't really finish with next steps, but the meeting defined the issue, laid out what's already happened, and we talked about some things that we might do next. It was actually pretty fun and I would definitely come to future meetings.''
The group did arrive at a consensus that something needs to be done to stem the rising cost of insulin in the USA. Each attendee left with an advocacy toolkit from T1International and a newfound commitment to connect and share our stories with our local, state, and national representatives. The group plans to meet again in the hopes of building a powerful #insulin4all movement in New York.