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Look to the Edges.

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.

5 Comments Post a comment
  1. I was mostly that person for years. I did not see doctors, test my blood sugar or care much about diabetes. I was fortunate, I have no right to be as fortunate as I am. My hope is that my good luck will not work for others just as others bad luck does not doom me.

    06/12/17; 8:33 pm
  2. The much-touted “high risk pools” are not what they’re made out to be. I was in one for several years. And due to insurance changes, I ended up with a substandard doctor who can’t even write a proper insulin prescription and thinks I’m a T2D (yes, I’m switching!).

    http://www.araby62.com/2017/05/just-say-no.html

    I’d love for PCPs and healthcare folks of all stripes to walk a mile in the average PWD’s shoes. Go to work high or low, struggle to overcome the effects of sitting at a desk for 8+ hours, all the while terrified one of your nosy coworkers will see you test or inject and label you less than worthy. (I hear conversations like this every day where I work.) Then commute the hour or so to get home, exhausted, and still make that perfectly balanced meal for dinner to land at 104 mg/dL with no effort. Oh, and make sure to get 8-9 hours of sleep before you rinse and repeat.

    Bad mood this morning, sorry. Need coffee! (Or is that covfefe?)

    06/13/17; 9:04 am
  3. andrew Bortle #

    First I noticed this person had to have a computer to write this article but has no !money for insulin? Priorities! Hording supplies only hurts everyone and there’s waste involved. I was without insurance for a year had to buy and use nph and needles many times over. I also worked another job so I could take care of myself. Priorities people. The government is not here to take care of you! Sorry that’s just the way it is. Go after the fraud and crooked people. I know I’m not going to be popular but think about it.

    06/14/17; 12:23 pm
    • Mike #

      There’s no end to the Instant judgment. Have you ever heard of a library, where they have computers and even internet access?

      06/15/17; 3:45 pm
      • andrew Bortle #

        Bet me! Why don’t you also read everything I wrote!

        06/19/17; 9:44 am

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