Irwin focuses on advocacy efforts through work with #insulin4all

Clair Irwin
Clair Irwin

PhD student Clair Irwin (MS '16, CAS '18) has a personal connection to her research on the embodied information behaviors of people with diabetes.

"Having lived with type 1 diabetes for nearly seventeen years, it dawned on me that everything I do to manage my health is information behavior," she said. "Checking my blood sugar is information retrieval. Calculating dosages based on my biometric data and nutritional information is information synthesis. Helping other people with diabetes troubleshoot oddities in their own health is information forwarding."

Irwin is active in the patient-led advocacy movement #insulin4all, which is a direct response to what people with diabetes call "the insulin crisis." She became aware of the movement when she was working on her CAS project, "A Resource Guide Collection and A Sociotechnical Framework for Supporting Youth with Type 1 Diabetes." She started an Illinois chapter of #insulin4all in 2018 and served as the chapter's first leader. She is now the chapter's research, resource, and education lead, which allows her to focus on her doctoral work.

"The cost of insulin has risen over 1,200% since the mid-'90s," Irwin said. "People who rely on insulin injections, like me, can't go without insulin—we literally die without it. More than a quarter of people with diabetes in the U.S. have rationed or are currently rationing their insulin. This time last year, I was rationing my insulin. It’s terrifying, and no one should have to resort to rationing."

According to Irwin, #insulin4all advocates from across the country have been fighting for increased checks-and-balances within the pharmaceutical industry through legislative lobbying and public education.

"Starting this week, I am leading efforts to roll out increased public service communication throughout the state to ensure that those severely affected by the intersection of the insulin crisis and COVID-19 know we're here to help. There are several current iSchool students helping, and several more alumni working with us," she said.

Her partner, Brad Irwin (MS '16), and fellow alum Gibson Wirth (MS '16) provide research and tech support for Illinois #insulin4all. Master's students Cynthia Medrano and Kiri Palm are creating a list of resources available to residents of different library districts, including food pantries and location-specific medical assistance, and master's student Eileen Lopez is working with Irwin to plan future workshops.

In addition to information behavior, Irwin is interested in the equitable representation of diabetes in fiction and other media forms, "because of the empowering and damaging effects story can have on individuals."

"My overall career goals are less about the type of job that I want to do and more about the positive impact I want to make. I want to advocate for people with diabetes, and help make our lives a bit better," she said.

If you're interested in volunteering with #insulin4all, there are over thirty state chapters. You can contact your local chapter at t1international.com/insulin4allchapters

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