University Hospitals and The Diabetes Link Aim to Improve Health Outcomes for Young Adults with Type 1 Diabetes by Developing a Financial Literacy Toolkit

Tuesday, March 28, 2023

$2.25 million from The Leona M. and Harry B. Helmsley Charitable Trust will fund effort

Nearly 1.5 million Americans have type 1 diabetes (T1D). This diagnosis can bring many challenges, especially for young adults who may experience instability in their careers and finances, lapses in insurance and care, and the need to navigate what can be a confusing health insurance system with potentially high out-of-pocket costs and risk for hospitalization. Thanks to a generous grant, University Hospitals and The Diabetes Link will develop a financial and health insurance literacy video toolkit to address a crucial gap — with the goal of empowering people with T1D and improving their health outcomes.

The Leona M. & Harry B. Helmsley Charitable Trust (Helmsley) has awarded $2.25 million over three years to University Hospitals (UH) for the study entitled “Type 1 Diabetes Financial Toolkit for Emerging Adults.” UH will collaborate with The Diabetes Link, a non-profit organization designed for young people with diabetes, providing them with resources, programs, and support.

People with T1D need regular injections of insulin — the hormone that balances blood glucose levels — to survive. The cost of insulin and diabetes devices that are required for self-management are a financial burden for many of the people who cannot live without them. This contributes to the reality that fewer than one-third of people with T1D meet optimal glycemic targets, according to research from the T1D Exchange.

“Young adulthood is a time of instability around work, finances, and health insurance. Individuals with T1D fear their situation may change and they won’t be able to access health insurance and therefore insulin,” said Julia Blanchette, PhD, Principal Investigator of the study; Nurse Scientist; Diabetes Care and Education Specialist at UH; Clinical Assistant Professor of Medicine at Case Western Reserve University. She was also diagnosed with T1D at age 7. “There’s a lack of literature available about how to navigate health insurance and finances, and almost nothing exists specifically to educate young adults with T1D.”
UH and The Diabetes Link will spend three years developing, refining, and testing a T1D financial toolkit in collaboration with a community advisory board that will consist of a series of short videos. The study team will also ensure participation of underserved, publicly insured and racially and ethnically diverse populations in the clinical validation of the toolkit for wide acceptability and utility.  
The end product aims to:
  • Improve health insurance literacy
  • Improve diabetes self-management outcomes (glycemic outcomes)
  • Be easy to use
  • Decrease financial stress
  • Improve readiness to transition to adult diabetes care
  • Be effective for patients
  • Appeal to a diverse audience
 UH and The Diabetes Link are committed to making this toolkit free-of-charge.
“Young adults should have the freedom to pursue their passions and step into their individuality,” said Christina Roth-Sleeper, Co-Principal Investigator of the study, and Founder and CEO of The Diabetes Link. She has lived with T1D since she was 14 years old. “It is a transformative time in a person's life. For a person living with a chronic condition like T1D, many of the challenges of young adulthood are further complicated by T1D: from the social pressure to fit in with their peers; to independent management of finances, insurance, and healthcare; to charting a career path. As part of our commitment to empowering young adults with diabetes to thrive, The Diabetes Link is excited to partner with Dr. Blanchette and the UH team to develop the toolkit and deliver it free of charge, in perpetuity, to the community.” 
“We often hear from people with T1D that navigating the system feels overwhelming, regardless of access to resources or insurance status,” said Deniz Dalton, Program Officer at the Helmsley Charitable Trust. “The T1D Financial Toolkit aims to help people at a critical transition period in navigating the need for continuous access to insulin and diabetes devices via micro-videos. Given the reality of the US healthcare system today, we at Helmsley believe increasing health insurance literacy support is crucial to helping people manage T1D.”
The community advisory board will lead content creation for the videos, making certain this intervention includes information that will have a positive impact on young adults with T1D from various backgrounds. The randomized controlled trial (RCT) will run out of four study sites across the United States to ensure its usefulness to a diverse audience.

“Our toolkit will include information about navigating both government and private insurance and how to get them,” said Dr. Blanchette. “We know diabetes places a greater burden on low-income communities and this toolkit will be geared toward helping these individuals as much as those with private insurance.”

The toolkit will be maintained and updated annually or as necessary in The Diabetes Link’s Resource Hub, where it can be accessed and utilized, free of charge for years into the future.

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