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Hard Work Pays Off for #insulin4all Chapters [USA Update]

Hard Work Pays Off for #insulin4all Chapters [USA Update]

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T1International is quickly expanding in the USA. Despite our Chapter model only starting in 2018, we now have 23 Chapters working in 26 states to address the insulin price crisis in America. The Chapters in Alabama, Arizona, GeorgiaMaine, Missouri & Kansas, Tennessee,Texas,Utah,Virginia, West Virginia,and Wisconsinhave recently launched and are working to build their membership. They aim to plan their first meetings in the near future. California, Connecticut, DC Metro Area, and Michigan Chapters are holding their first meetings between late February and early March, with Pennsylvania’s 2nd meeting planned for around that time. Details of the meetings and Chapter activities can be found on the Chapter social channels.

While there are many Chapters just getting off the ground, our longer-standing Chapters are making some hugely exciting progress in their States.

Since its launch as the original T1International Chapter in March of 2018, KOI#insulin4all has become increasingly engaged with legislators and state representatives in Kentucky, Ohio and Indiana. In Kentucky, HB 64 (also known as Kevin's Law) was introduced by Representative Danny Bentley, and recently approved by the House Health and Family Services Committee. Kevin’s Law has been passed in 12 states and allows a pharmacist to dispense an emergency supply of insulin to a patient without a current prescription. The Kentucky Chapter members have made impressive efforts to influence the legislative sessions by giving testimonies, discussing the issues and telling their stories. Thanks to tireless efforts from strong advocates, a bi-partisan bill to address price transparency, HB 502, has just been introduced.

Ohio advocates have been in discussion with Senator Nathan Manning and other key legislators to push for an insulin price transparency bill. In Indiana – home of Eli Lilly headquarters – HB 1029, a formal study to explore prescription drug price issues, was introduced by Rep. Robin Shackleford. Four KOI advocates delivered powerful testimony at the House hearing, where the bill passed unanimously and now moves onto the senate.

In Colorado, a version of Kevin’s Law, HB 1077, has fully passed in the House, Senate and the Full Senate vote. The final step, and a very important one, will then be developing a one page introduction to pharmacists so they can know that the bill exists. The Chapter is holding its 2nd meeting this month to work on planning and strategy, and they are also focused on pushing forward transparency bills this legislative session. 

Kevin’s law, SB 1019, has also passed the Senate Oklahoma, and moves onto the House for its first reading there. HB 1130, which would cap the co-payment on insulin, is pending its second reading at the House Insurance Committee.

A lot is also happening in Minnesota, home of our Charity Ambassador, Nicole Smith-Holt. The Chapter’s latest executive meeting focused on the preparations for the insulin affordability rally to be held on March 5th. The rally will take place in conjunction with meetings involving State Representatives and Senators to discuss four drug price bills that have been introduced for hearing: HF 0485SF 0364, SF 0365SF 0366. Many Minnesota #insulin4all advocates were in attendance at the end of January press conference where the four bills were introduced. The Chapter recently held their first open meeting to engage new advocates. There was a short training in preparation for the March 5th rally, an introduction to T1International, and a presentation delivered by Nicole titled: “From Grieving Mom to Passionate Diabetes Advocate”.

In Illinois, the Chapter held its first meeting in January. Despite bad weather there were 20 passionate people there. Together the group strategized the best way to reach out to their representatives and which priorities they wanted to push forward. They have a clear plan to mobilize Chapter members when bills come to a vote. Representative Will Guzzardi from the Chicago area is chairing a committee investigating prescription drug prices and is supportive of transparency legislation.To date, four bills have been put forward in the State of Illinois (HB 0891, HB 1441, HB 0053 and HB 0156), with more expected soon. The Chapter Leader, Clair, has been excellent about seeking out partnerships, building coalitions, and creating resources as and when there is a need. These resources are then shared with all Chapter Leaders to use in their own activities.

The first Iowa meeting took place in late January, with good turnout despite poor weather. Allison, the Chapter Leader, created a PowerPoint to help get advocates up to speed on background and studies related to insulin pricing, legislation and oversight on both the federal and state levels, lawsuits against the pharmaceutical companies, and some specific Iowa statistics. Everyone there stressed how important it is for the Chapter to put a human face to the insulin price crisis. Sen. Claire Celsi from the Iowa State Senate was at the meeting, giving people the chance to discuss a wide variety of important topics that may warrant legislation, including a transparency bill. The group planned next steps and would like to name the bill in honor of Jesse Lutgen, a young man in Iowa who passed away due to rationing insulin. The Chapter will support recently introduced House File 447 bill, and its companion bill Senate File 291, to expand Iowa’s emergency insulin refills from 72 hours to 30 days. Both bills were are being sent to the committee on Human Resources.

Although the New York Chapter was only officially formed a few short months ago, the group has held both an in-person meeting, and online meeting. The in-person meeting in Brooklyn, was full of patients with passion, commitment, and hope. Lauren, the Chapter Leader, told us that the group had an open discussion about their personal experiences about living with diabetes. At the heart of every discussion was a common theme: accessibility and affordability of insulin. The group discussed similar topics to the Iowa Chapter, and agreed that there must be policy change to ensure every citizen is guaranteed affordable access to insulin for their entire life.

“If we work together, no one else has to die because they rationed insulin they could no longer afford or because there was an issue with their prescription,” said advocate Karlynn Holland to the group. Everyone nodded in agreement, Lauren told us. This is what we are all fighting for.

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