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    • 1 hour, 20 minutes ago
      Donna Owens likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      Yes. It’s f*ing annoying.
    • 12 hours, 3 minutes ago
      Amy Schneider likes your comment at
      Do you store your unopened insulin in the refrigerator?
      I keep my opened insulin in the refrigerator too. When traveling I use a FRIO evaporative pouch.
    • 13 hours, 29 minutes ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      I want a thumbs down icon!
    • 13 hours, 29 minutes ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      I seldom have any questions other than RX refill request which I submit through the patient portal. If I do have treatment questions, I typically do my own research, and if not satisfied with what I find out, I submit a question in the portal.
    • 13 hours, 30 minutes ago
      Kathy Hanavan likes your comment at
      Between your regular T1D care visits, what questions tend to come up that you wish you could ask a diabetes expert? Share your thoughts in the comments.
      When I come up with a question between visits, I usually just do some research.
    • 15 hours, 42 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      I keep my opened insulin in the refrigerator too. When traveling I use a FRIO evaporative pouch.
    • 15 hours, 43 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Sorry. Of course I store unopened in frig. Opened in my room as I use it up in 30 days
    • 15 hours, 44 minutes ago
      ConnieT1D62 likes your comment at
      Do you store your unopened insulin in the refrigerator?
      No, I keep it in the oven! ;) Same answer as the last time they asked this ridiculous question!
    • 16 hours, 26 minutes ago
      Becky Hertz likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Unopened yes, and now even opened just in case. I am getting a new health [lan (thank goodness a much better one - with better doctors and hospitals in network!) so it's worth it. But I can't get any appt - even for a PCP until September. I've been occasionally buying out of pocket insulin, pump and CGM supplies (in my mind, hoarding is a character asset for T1D people). I need to have my enough stuff to see me through, Of course, I am hoping there''s an appt cancellation.
    • 17 hours, 49 minutes ago
      Bruce Schnitzler likes your comment at
      Do you store your unopened insulin in the refrigerator?
      Unopened yes, and now even opened just in case. I am getting a new health [lan (thank goodness a much better one - with better doctors and hospitals in network!) so it's worth it. But I can't get any appt - even for a PCP until September. I've been occasionally buying out of pocket insulin, pump and CGM supplies (in my mind, hoarding is a character asset for T1D people). I need to have my enough stuff to see me through, Of course, I am hoping there''s an appt cancellation.
    • 19 hours, 46 minutes ago
      alex likes your comment at
      Here’s What You Need to Know About the Dexcom G7
      This article explains the Dexcom G7 features in a clear and easy way, especially for people new to continuous glucose monitoring. Very informative and helpful. Sportzfy TV Download
    • 1 day, 11 hours ago
      KarenM6 likes your comment at
      Have you ever been told you couldn’t physically do something because you live with diabetes?
      Long time ago - told there were certain occupations I would not be allowed to do because if T1D. Pilot, air traffic controller, military, etc.
    • 1 day, 11 hours ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I have been told many times "YOU CAN'T EAT THAT!" ONLY to frustrate them and eat it anyway and then bolus accordingly.
    • 1 day, 11 hours ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      I think it is a common experience for most people with T1D. People do not understand anything about it. I do not take it personally. I try to educate when appropriate.
    • 1 day, 11 hours ago
      KarenM6 likes your comment at
      Has someone ever told you that you can’t eat something because you live with diabetes?
      Lol hell when haven't they. Lol
    • 1 day, 11 hours ago
      KarenM6 likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 13 hours ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was only 2 when Diagnosed 70 years ago. My small town doctor admitted he didn't know much about T1D, and fortune for my parents and I he called what is now Joslin Clinic, and they told him how much insulin to give me. He taught my parents, who then traveled over 350 miles to Boston, to learn about how to manage T1D. My doctor learned more about T1D, and was able to help 2 other young men, that were later DX with T1D in our small town. I went to Joslin until I turned 18 and returned to become a Joslin Medalist and participated in the research study, 20 years ago. Still go there for some care.
    • 1 day, 13 hours ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was 7 when things changed in my home. My older brother was hospitalized for 2 weeks. When he came home, we no longer ate the way we had before. This was 1956. Dessert alternated between sugarless pudding or sugarless Jello. I learned that bread and potatoes had carbohydrates and that turned to sugar. There was a jar in the bathroom. It seemed my brother was testing his urine every time he went in there. There was a burner and pot on the stove designated for boiling syringes. I watched my brother give himself shots and I remember how hard it was to find someone to manage his care if my parents had to travel. Diabetic Forecast magazine came in the mail each month and there were meetings of the local diabetes association that my mother attended religiously. My brother got a kidney and pancreas transplant at age 60 and before he died lived for 5 years as a non-diabetic. A few years later I was diagnosed. Sorry he was not able to make use of today’s technology. I often wonder what he and my late parents would think about me, at age 66, being the only one in the family with type 1.
    • 1 day, 13 hours ago
      lis be likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 17 hours ago
      kilupx likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      My brother was type 1 since an early age. I was only diagnosed in my late 40s
    • 1 day, 19 hours ago
      Phyllis Biederman likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 1 day, 20 hours ago
      Bill Williams likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Being 4 years of age, I think I can be forgiven for not knowing much of anything at all. That was 3 quarters of a century ago. ⎛⎝( ` ᢍ ´ )⎠⎞
    • 1 day, 20 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I was diagnosed in 1976 at the age of 18 while in college. One weekend, I was drinking a lot of water and peeing frequently. I remembered having read a Reader's Digest article on diabetes, and I told my friends I thought I might have it. Two days later, the diagnosis was confirmed.
    • 1 day, 20 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      Absolutely nothing. Diagnosed in late December 1962 at at the age of 8 years and was told I was going for a stay in hospital because I have "sugar diabetes".
    • 1 day, 20 hours ago
      Lawrence S. likes your comment at
      How much did you know about type 1 diabetes before you were diagnosed?
      I knew I couldn’t or shouldn’t have my two fav things in the world: Pepsi cola and chocolate. I was 42, and suspected very strongly that I had it, and ate a large piece of chocolate cake before my doctor’s appointment (sounds more like I was 12). Fast forward 25 years later: I never had a real cola again, but do occasionally have chocolate. I’m way healthier than I was back then in terms of diet. I no longer have irritable bowel, and I’m lucky to be able to afford what I need to combat the ill effects of this chronic disease. I’m blessed, and grateful for insulin.
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    How concerned are you right now about affording your next order of T1D supplies?

    Home > LC Polls > How concerned are you right now about affording your next order of T1D supplies?
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    If you were diagnosed with diabetes as a child or teen, when did you transfer your care to an adult diabetes provider (e.g., adult endocrinologist, adult diabetes specialist, adult primary care provider for your T1D)?

    Sarah Howard

    Sarah Howard has worked in the diabetes research field ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.

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    28 Comments

    1. Lawrence S.

      Health Insurance, Medicare, plus supplemental insurance covers most of the costs. Blood test strips, lancets and alcohol pads are not covered. But, I use them very seldom.

      3 years ago Log in to Reply
    2. Ahh Life

      If revulsion is “a concern” then the answer would be “very.” What’s a body to do? Pay up or die. Rarely are life’s choices so simple.

      Even Jack Benny’s famous hold up question about “Your money or your life?” could be at least thought about and considered.

      6
      3 years ago Log in to Reply
    3. Jennifer Edmiston

      I am fortunate to have great health insurance and an FSA to cover my out of pocket expenses, such as my copay’s.

      3 years ago Log in to Reply
    4. Mary Dexter

      My concern is not about affordability but about access. Will my endocrinologist continue to renew my prescriptions for insulin and will the amounts prescribed be sufficient, or will they try to micromanage it to the last drop, or decide I can’t really be T1 because I am old and should just eat less and exercise more? Will they fax the appointment notes to Edwards before my CGM authorization expires or will they merely say they did because they don’t understand why it matters? Will I be able to get some sort of appointment at the correct interval so I don’t lose my authorization ? I fought hard to get the correct diagnosis and access to insulin 18 years ago, and CGM authorization over 10 years ago, why must I continue to fight for these things?

      8
      3 years ago Log in to Reply
      1. Kathy Hanavan

        So frustrating for you! This is truly unacceptable.

        1
        3 years ago Log in to Reply
      2. pru barry

        Thanks for enumerating all the ways there are to stop an order for the next supply shipment to reach its destination. I was only going to add my usual “Harumph!” to the whole system, and let it go at that. You, Mary, have spelled it out in terms anyone should understand and take seriously. Thank you sincerely. I’ve been in this game for almost 70 years and wonder about the toll it’s taking on the whole diabetes population. We can’t win without trying!

        4
        3 years ago Log in to Reply
    5. Daniel Bestvater

      Somewhat.
      I live in Canada with no medical coverage. In Canada doctor visits and hospital stays are covered. So if I run out of insulin I can always go to the nearest hospital.

      1
      3 years ago Log in to Reply
    6. mbulzomi@optonline.net

      I’m very lucky that I pay nothing out of pocket for any of my Dex, Tandem and Insulin supplies. The only thing I now pay for is my Test Stripes (Maybe $50 dollars every two years.) I stopped that prescription when I started on the Dex (G5) sensors.

      1
      3 years ago Log in to Reply
    7. Kevin McCue

      Not only am I concerned about affordability but several times my insurance company has reneged on their promise to pay and sent me a bill for supplies that were previously covered. So I would have a zero due balance then 6 months later I would get a bill because insurance would use a new term like coinsurance or some other term that changed the terms of their responsibilities in their favor

      3
      3 years ago Log in to Reply
    8. Mick Martin

      Not at all concerned as I live in the UK (United Kingdom of Great Britain and Northern Ireland) where ALL of my diabetes supplies cost me absolutely zero. They are ALL paid for by our NHS (National Health Service), which is financed via direct taxation of all working people.

      1
      3 years ago Log in to Reply
      1. Lawrence S.

        I wonder if America’s great capitalist society will ever catch up? It’s not about the people, it’s about the money!

        3
        3 years ago Log in to Reply
      2. Mick Martin

        @Lawrence S.,

        I truly do wish I could answer that question, sir. I have ‘spoken’ with people, via email, that have experienced extreme difficulty with buying/affording to buy such necessities as insulin, some of whom I have little doubt that have now ‘passed over’ because of the situation in the United States. I had contemplated sending some of my own supplies to them, but I know full well that this contravenes the laws within my own country, and I’m not even sure that they would be allowed through customs in the United States.

        It makes me incredibly sad that such a rich nation can’t even devise a way to ‘look after’ its citizens. Then again, I guess there’s no profit to be made, is there?

        3
        3 years ago Log in to Reply
    9. TS

      I am fortunate not to have to be concerned with affording supplies. However, my freestyle Libre sensors are supposedly on back order and I’ve been going now for a week and a half without a sensor. It’s actually nice not to be being woken up at night by the alarms But, it also is difficult to make decisions without continuous monitoring. I know I know, we did it for years but I got used to being able to swipe my arm and see what my blood sugar was and be warned if it’s too high or too low. Is anyone know anything about this back order thing? Is anyone else affected?

      3 years ago Log in to Reply
    10. TEH

      I am not worried about affording my T1d supplies because I thankfully have Medicare and a part D Rx plan. I am worried about the onerous question each month about what number of sensors I have left. It’s like Medicare has edited they be rationed. I get a 3 month supply of resivors and infusion sets, but sensors are only dolled out once a month. Is Medicare worried about somebody hording them and selling them on the black market?

      1
      3 years ago Log in to Reply
      1. Kristine Warmecke

        Wow! When I receive my Tandem and Dexcom supplies, it’s for 90 days worth or is supposed to be. Maybe that’s why I’ve gotten enough sensors to cover 4.5 out of 9 months, this year.

        3 years ago Log in to Reply
    11. Joan Fray

      Thank god for Kaiser! And MediCare! My co pay is 20% on some things, $0 on others.

      3
      3 years ago Log in to Reply
    12. Tom Caesar

      Fortunately insurance covers my supplies, except insulin which costs close to $400 each January to cover my deductible then drops to more affordable $38. Not a cheap disease we have!!!

      3 years ago Log in to Reply
    13. Steven Gill

      I think in the best of times logical to have a little concern. “Supply chain” issues has me thinking but cost wise I’ve lowered my expenses so there’s a little more financially (sold my house last year, remodeled a “garage apartment,”) but don’t see me retiring soon.

      But I also have three other brothers offer me a place so I’m fortunate.

      3 years ago Log in to Reply
    14. cynthia jaworski

      I can pay it. I am frugal, and my life choices were made with the idea of keeping medical insurance. However, my effective income has tken a big hit. It means alot less money for my retirement, etc. The situation might have been quite different if I were in my 20’s. Back then, a ten-fold rise in out of pocket insulin costs would not have been possible for me to absorb.
      he unexpectedness of the leap in costs, as well as supply chain issues, gives me a fair amount of fear.

      3 years ago Log in to Reply
    15. Kathryn Keller

      Not concerned about affording it but concerned about getting supplies thanks to switching insurance and referrals and authorizations taking soooo long

      1
      3 years ago Log in to Reply
    16. Linda Zottoli

      I pay a lot for FEP blue cross, in addition to Medicare Part B, so my diabetes supplies are well-covered, at least at this time.

      3 years ago Log in to Reply
    17. Pauline M Reynolds

      Not at all concerned, however I must confess to a niggling sense of “what if it was not available or delayed?”

      1
      3 years ago Log in to Reply
    18. Janis Senungetuk

      My most pressing concern is will Edwards get my monthly sensor allotment to me before I run out? Being able to afford supplies is a constant concern as I watch my spouse suffer each day from the mental and physical pain created by her work environment in the hospital. Her employment pays our insurance.

      2
      3 years ago Log in to Reply
    19. Nevin Bowman

      Ask in December 🙂

      3
      3 years ago Log in to Reply
    20. George Lovelace

      I’m just concerned about MAGA politicians like Ted Cruz and their attempts to shut down Medicare

      6
      3 years ago Log in to Reply
    21. PamK

      Thankfully, we’ve gotten everything squared away with my new insurance. PA’s are in place, so all is covered. Yay!

      3 years ago Log in to Reply
    22. Molly Jones

      I chose a little concerned as I always stock up as much as possible on my medical supplies. I have the best possible health care coverage, but do not take things for granted.
      Who knows what could always occur and affect even the healthiest people, economic plunges, the bubonic plague, a natural disaster, a worldwide war, …
      I do not worry about it, but know these things are possible and keep occurring throughout history. They have always been a recurrent part of life.

      1
      3 years ago Log in to Reply
    23. Wanacure

      Some states refuse available federal funds for healthcare! Whole Washington is again gathering initiative signatures for our own universal single payer plan. Isn’t that how Canada did it, province by province, starting in Saskatchewan? Politicians running for re-election are vulnerable. Email them, phone them, bug them. Demand a response from your inquiry describing your problem, one issue at a time. Be polite but persistent. Ask TV reporters to investigate. Join a group for coordinated effectiveness. Or at least send a check for $25 explaining what you want changed. I’m grateful for past lobbying by JDRF kids, disabled people chaining themselves on Capital steps, dramatic actions by Act Up AIDS activists for healthcare research and reforms, activist nurses and doctors. Now we need to educate the new younger politicians. You might check local chapters of other groups like Social Security Works, National Nurses United, Physicians for a National Healthcare Plan. Don’t privatize Medicare. Don’t privatize social security.

      3 years ago Log in to Reply

    How concerned are you right now about affording your next order of T1D supplies? Cancel reply

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