Longer, Better Lives for Everyone with Type 1 Diabetes

Thanks to the generosity of a Canadian donor, Myriad Canada is working with T1D Exchange to build the most robust data platform for type 1 diabetes in North America, driving significant research and innovation in treatment, prevention, and – hopefully – a cure.

The Power of Many

Since 2009, T1D Exchange has been dedicated to improving the lives of everyone living with type 1 diabetes (T1D) by increasing access to care and resources, promoting education and advocating for policy that helps lead to better, longer lives for all with T1D.

Part of this work includes the T1D Exchange Registry, a research study that is designed to capture the challenges and harness the collective power of people living with type 1 diabetes. With some 13,500 participants in the US (and a growing number of Canadians), those many voices and experiences amplify and inform the development of new treatments and new policies.

Diabetes and Healthcare: A Complex Reality

For someone facing the medical demands and costs of living with T1D, finding a health insurance plan can be incredibly overwhelming. Choosing the wrong plan can cost a T1D patient thousands of dollars and cause tremendous frustration as they attempt to get the critical coverage for the care they need.

Necessity is the Father of Invention

Michael Gambrel, whose 10 year-old daughter lives with T1D, became involved with T1D Exchange after he joined the Registry.  “I [was] studying for my doctorate in Healthcare Administration,” explains Gambrel.  “After my first semester there, my daughter went into the hospital, spent a day in the ICU, and was diagnosed with type 1 at 6 years old. They basically said ‘here’s how you’re gonna care for it’ and three days later we were out on our own with no previous experience or family history.” 

Gambrel quickly realized that they were in for a difficult transition. Their daughter’s hospitalization left them with huge, unexpected bills. They had to navigate new insurance coverage for medical supplies and other specialized healthcare services, and figure out how they would pay for whatever wasn’t covered as well as the co-pays¹. They had to find out about legal protections for T1D and requirements for schools and daycares – all while facing sleepless nights caring for a young child just out of intensive care and the new world of multiple glucose checks.

This experience caused Gambrel to refocus his studies; he has spent the last 4 years researching health insurance plans and what most individuals and families living with T1D need – but may not understand. 

The Power of Community

Michael Gambrel and his daughter

Through the T1D Exchange, Gambrel has been able to reach thousands of individuals and families who would otherwise have to head into this process with little guidance or help, and sift through multiple policies and a plethora of confusing information – and make difficult decisions that could have serious impacts on both their health and wallets. 

Gambrel has made this difficult process easier for patients and their caregivers. He clearly explains the different insurance options available and how they differ and has identified the basic questions to ask and the key factors to consider before selecting a health insurance plan. 

As if that wasn’t enough, the hard, fact-based evidence generated by the Registry has resulted in changes to insurance coverage for type 1 diabetes patients.

¹  A co-pay is a fixed out-of-pocket amount paid by an insured for covered services. It is a standard part of many American health insurance plans for services such as doctor visits or prescription drugs.

To learn more about T1D Exchange or Michael Gambrel’s work, visit T1D Exchange’s website or the featured blog post on this study.