Amplifying the Voices of People Living with T1D: The Role of Lived Experience in Advocacy | Recording-Amplifying the Voices of People Living with T1D: The Role of Lived Experience in Advocacy

Video Transcription

Video Summary

The webinar, hosted by the American Diabetes Association’s Diabetes and Youth Interest Group, featured Dr. Mary Pat Gallagher and Dr. Janice Wong introducing a discussion with advocates Kyle Banks and Kristen Whitney Daniels about living with type 1 diabetes, community, and advocacy.

Kyle Banks, founder of the Kyler Cares Foundation, shared how his diagnosis in 2015 while performing in <em>The Lion King</em> led him to create an organization focused on improving health outcomes for marginalized communities with type 1 diabetes. Kyler Cares offers educational resources, financial support for CGMs and insulin pumps, health coaching, and in-person gatherings. Kristen Daniels, a longtime type 1 advocate with T1 International, described the crisis she faced after losing insurance at age 26 and rationing insulin, which pushed her into advocacy for affordable and equitable access to diabetes supplies.

A major theme was the importance of clinicians as partners in care. Both speakers emphasized listening, understanding patients’ lives and cultures, avoiding judgment, and building trust so people feel safe sharing real barriers to management. They also encouraged providers to connect patients with advocacy organizations and community resources.

The conversation highlighted patient voice in research, with both guests describing meaningful involvement in studies and advisory boards. They stressed that people with lived experience should be included from the start, paid for their time, and treated as experts.

Other topics included diabetes screening, access barriers such as prior authorizations, and the need for solidarity across diabetes types. The session ended with a reminder that advocacy can be emotionally taxing, but community, connection, and visible progress help sustain the work.

Keywords

type 1 diabetes

diabetes advocacy

community support

health equity

insulin access

continuous glucose monitors

patient voice

clinician partnership

marginalized communities

diabetes education