I saw this thread on Twitter last night from Dr. Jake Kushner, Chief of Pediatric Diabetes & Endo, BCM/Texas Children’s Hospital in response to a person with type 1 diabetes living without health insurance. Here is her account of what that experience is like.

You can throw whatever stones you’d like about people needing to pull themselves up by the boot straps or whatever you want to use to explain their perceived inability to fix their dire situation, but I read her words and they were overwhelming. I was diagnosed with type 1 diabetes at the age of seven and right away, I was on my parents’ insurance policy and they fought the access battles for me. I stayed on their insurance through college and started my “real job” two days after I graduated, on my own insurance policy and finally understanding what it was like to ensure I was insured. Now, I have the support of my family and access to insurance coverage that, for the time being, covers what I need and also a fair amount of what I want.

I am lucky. I know this. I appreciate this more now, in these strange political times, than I ever have before.

Dr. Kushner mentioned “the edges” of the diabetes community, where people are crowdsourcing funding for their insulin or forgoing other bills in order to afford their supplies. Where people are struggling. Where people are dying. These stories aren’t often heard. But they need to be. Reading Ana’s story didn’t open my eyes to the fact that these stories exist, but more than they need to be told and amplified and heard.

They need to be heard.

“We need to look to the edges of our T1D community, away from the center. Who is having trouble? Who struggles to get care? How can we help?”

If you feel as though you are on “the edges” that Dr. Kushner mentioned, and you have a story about diabetes, access, and what real life is like with this disease that needs to be heard, please share it. If you’d like to share it here, please email me. I would really, really like to share this platform for stories that make a difference, and those stories are so much bigger than mine alone. Our collective is powerful.

But whatever you do, please don’t stay quiet. We need to hear your stories.

Every single person with diabetes counts.

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