Updated: Mar 3, 2020
Katie Thivener (pictured, centre) is a Patient Navigator at one of the largest paediatric diabetes centres in the USA, the Barbara Davis Centre in Colorado. As a Patient Navigator, her role is to support kids with type 1 and their families to break down barriers to better diabetes management, and to help allocate the clinic’s resources amongst families, patients, and providers. Who better to do that than a person living with type 1 diabetes? Katie is also studying a Masters in Community and Behavioural Public Health, and is spending two weeks at the Family Centre this January observing and learning about our programs and services, so that she can build new ideas into her work in the USA.
Reflecting on her first week’s experience at Family Camp, Katie writes:
I feel so fortunate to be here learning more about the innovative programs the Type 1 Family Centre offers the community in WA! When I started on my path to becoming a diabetes educator, I began researching the best centres for type 1 education and programs. I found the Type 1 Diabetes Family Centre online and knew instantly it was something special. I met Bec, CEO, and Amy, when they came to Colorado for the Low Carb Denver conference last year, and I felt their overwhelming passion for connection and community. I knew that the Family Centre has people at its heart.
I spent my first week on Family Camp. Seeing the connections the families made was a real reminder that opportunities to build community through programs like camps change people’s lives in ways that medical devices cannot. We learn from one another through sharing lived experience and honouring each other’s stories.
My time at Family Camp helped me better understand the differences between the healthcare systems and patient experiences in Australia and the USA. In the USA, the cost of healthcare is high – CGM is not subsidised like it is here in Australia, and neither is insulin. Insulin costs families, particularly if they are uninsured, hundreds of dollars per vial. I will never forget a little boy who told me in clinic at home that he knew that he was ‘expensive’, and how aware he was of what his grandparents were paying for his care. It broke my heart.
Seeing how the healthcare system in my country works compared to the Australian system, with CGM subsidies for people under the age of 21, and subsidised insulin and diabetes consumables, really blew my mind. I think that the USA has a lot to learn from Australia about looking after people with type 1 diabetes and helping them to affordably access the tools, devices and medicines they need to live.
Where I’m from, many families have one parent step down from their career in order to change insurance or qualify for lower income in order to get government assistance. I heard from families here in Australia that, similarly, in some cases one parent has given up work to care for their child throughout the school day as some schools won’t administer insulin. What struck me is that no matter where you are, diabetes hits families hard, with systems to navigate, finances to consider, and the emotional toll of managing the disease around-the-clock.
Across the USA and Australia, another common thread is that it is caretakers – the parents and primary carers of children with type 1 - who have a truly crucial role. We don’t run family camps at the Barbara Davis Centre, and sharing time with families in an immersive way at Family Camp showed me the amount of mental energy it takes to care for a child with type 1 diabetes. The adaptability the parents showed as we moved from activity to activity during the action-packed days, carefully managing basal rates and planning ahead for food and activity, was remarkable. I deeply admired their strength, smarts, and resilience.
What I learned this week was that even though we may be part of different systems, have different words for things, and different opinions on Vegemite, everybody who’s impacted by type 1 diabetes needs a tribe.
I’m grateful to the Type 1 Diabetes Family Centre for being community connectors, and for the time I got to share with WA families on camp. I’m excited to learn more about the Family Centre’s Babysitters’ Workshop, Schools’ Training and GP Visit programs, and to help out with Kids in the Kitchen and adult and adolescent community events in the coming week! ‘