Preparing for the transition from adolescence to adulthood with diabetes is something most parents fear, and if we admit it, most clinicians are ill-prepared for. There are several excellent resources out there from organizations like Children’s Healthcare of Atlanta that can help you, but what is your institution doing for this population?
A lot of adult endocrinology practices tell me they don’t usually see many patients transition into adulthood and that patients prefer staying in their pediatric practices. A lot of pediatric practices tell me they don’t have a great system for passing a patient off to an adult clinic for continuation of care, so they just keep them as long as they need to. One pediatric endocrinologist said, “I pass my patients to adult providers when they start planning a pregnancy, as that seems a natural break in the cycle.” But what if you’re not planning a pregnancy or happen to be biologically male?
There have been a number of incredibly sad and unnecessary deaths in the diabetes community due to lack of ability to afford insulin.
How do we fix this? How do you “caulk” the cracks to prevent someone from slipping through during this transition? I ask because recently there have been a number of incredibly sad and unnecessary deaths in the diabetes community due to lack of ability to afford insulin. This article from NPR shares the story of a young man who died between health plans, one month after he aged out of his mother’s coverage and was rationing insulin.
One thing I know I was ill-prepared for as a patient was dealing with insurance claims. Here’s a great checklist from On Track Diabetes to help parents inform their adolescent’s care. As a diabetes educator, you can help them digest this list into shorter and smaller achievable goals.
Although I now consider myself an expert on the topic, I had to learn from hard knocks; like sobbing as a 20-year-old in a CVS when my insurance accidently kicked me off the insured list and I faced a $1,300 bill I could not pay. The alternative was to go without insulin, a death sentence that scared me out of my skin. I kept thinking, “How is it that I can just die if I don’t have the money for this?” Luckily, the pharmacist sold me 1 vial for $300 (which I also didn’t have, but easier than the $1300 I was facing) to make it through the night.
Why didn’t I plan? Because I was a newly diagnosed 20-year-old with no idea how insurance worked. I also naively thought that nobody would just let you die when you needed a medication to live. I think that lesson hurt the most.
If your clinic does not currently have a system or protocol in place for addressing these gaps in coverage, please consider this a plea to do so. If you don’t know where to start, Anne Peters and Lori Laffel offer a cohesive list of why adolescents fall through the cracks in Diabetes Care for Emerging Adults: Recommendations for Transition From Pediatric to Adult Diabetes Care Systems.
By educating adolescents with diabetes on how to advocate for themselves, how to use a different insulin in a pinch (available over the counter at some pharmacies) or how to deal with an insurance claim — we are preparing them for success. The school of hard knocks can teach them to survive with a chronic illness, but we as educators can prepare people with diabetes to thrive in all situations. It’s time we ensured this type of care and situation isn’t overlooked.
About the Author:
Molly McElwee-Malloy is a writer for the AADE Blog, an AADE Spokesperson and the Clinical Services Manager for Tandem Diabetes Care. She previously worked for TypeZero Technologies and UVA's Center for Diabetes Technology. Molly is the chair of the technology workgroup for AADE. She's active in the diabetes online peer support community: @MollyMacT1D.
Disclaimer: The views and opinions expressed in this blog are those of the author and do not necessarily reflect the views of Tandem.