“Access to insulin is a human right”: this was the central theme during a gathering of #insulin4all advocates in Cincinnati on March 25th. The group came together to focus on regional action in Kentucky, Ohio, and Indiana regarding insulin pricing. Advocate Angela Lautner shares her perspective.

As someone who is impacted by the high price of insulin, I was excited to meet with others who face the same issues and to plan action.

People in attendance made the trip from Louisville, Dayton, Cleveland, Cincinnati, and northern Kentucky, a region where insulin pricing has not yet had a voice. A consistent fear expressed by every person in the room was that of either losing health insurance coverage or being forced onto a high deductible health care plan, where paying the list prices of insulin becomes the only option for staying alive.

After introductions, I gave a brief history of the#insulin4all movement to date. Fran Quigley of PFAM provided a brief summary of insulin and drug price transparency legislation in Nevada and Oregon, along with current efforts in Colorado to pass the Insulin Price Transparency Act of 2018. I presented videos about the work T1International does and the September 2017 protest organized against insulin price-gouging at Eli Lilly headquarters in Indianapolis.

Finally, we got to the core reason for our meeting, where we started an open-ended discussion about actions we would take. Eryn Ruder helped us focus on the most important question: “Why are we coming together to campaign for change regarding insulin pricing?” For us, the common answer was rooted in our belief that “insulin is necessary for life and it is unaffordable”. Agreeing on this helped us form our goal and objectives.

It was clear that most people in the group were very passionate in their belief that legislation would be the best way to create change, so we decided that our main goal would be around pushing forward insulin pricing legislation in the Kentucky, Ohio, Indiana area.

While planning action in the coming weeks, our focus will be on campaigns directed at our state legislators. This might take the form of local letters and petitions, with a plan to ultimately present these, along with personal stories, to legislators in request for action. Ideas included setting a “day of action” at heavily trafficked areas and venues, attending health advocacy events at our State Capitols for opportunities to meet with legislators, and seeking commitment from candidates and legislators to address insulin pricing in the 2019 legislative sessions.

Those of us working on #insulin4all action in Kentucky, Ohio, and Indiana decided to name ourselves the KOI insulin4all movement. You can now follow us on Twitter @KOIinsulin4all or email us at KOI.insulin4all@gmail.com for updates on campaigns and advocacy in our region. Our regional group is supported by T1International and is entirely comprised of passionate volunteers. This means we won’t always be able to respond immediately, but we will always be in touch as soon as we can.

While we understand that we likely face a long road ahead, full of unknown challenges from many sides, we refuse to sit and do nothing. People are dying because of the price of insulin. Not one more life should be lost because they could not afford the very thing they need to stay alive. That is why we will continue our local action planning and advocacy until we see change.