Activists With Diabetes Take on the Global Insulin Crisis

Yaa is struggling to keep a reliable Wi-Fi signal from Ghana, but Mohammad logs in on time from Kuwait. Anna had to relocate to a café in Austria to get connected. Johnpeter was hoping to call in, too. But he is in a rural part of Tanzania today, and an internet connection is nowhere to be found. The group Skype call has gotten off to a bumpy start. But no one ever said that building a global human rights movement would be easy.
Finally, Yaa and Mohammad link up with Apoorva from India, Anna from Austria and Karyn from the US. The call’s agenda is all about activism, but as the conversation winds down, the host, Elizabeth Pfiester in the UK, pivots to a personal farewell: “I hope everyone is having a smooth blood sugar day today. Mine has been kind of rocky.” The line is quickly abuzz with good wishes for Pfiester, and a lot of empathy. The heat is playing havoc with Mohammad’s sugars, it turns out. Apoorva’s levels are out of whack due to some exam-related stress; Karyn is recovering from a kidney infection that pushed her sugars high.
They have all been there, and that is the point. Everyone on the call has Type 1 diabetes, and all have committed to serving as volunteer advocates in their communities, with their work coordinated through a group called T1International, founded and directed by Pfiester.
The popular image of a crusading health care advocate is usually embodied by a compassionate physician or a determined researcher. In that scenario, patients are portrayed as the passive — often helpless — beneficiaries of the professionals’ selfless calls for better care. It’s not a good match with the model of a successful social movement, where those most directly affected are on the front lines. That was the structure of the civil rights movement, the anti-apartheid campaign and the labor movement, among many others. So T1International aims to flip the usual health care advocacy script, this time putting patients in the lead roles.

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