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    • 7 hours, 30 minutes ago
      Anita Stokar likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Hard to truly say without details. I said likely not, but really this is such an open ended question that has too many possibilities to answer.
    • 7 hours, 36 minutes ago
      Anita Stokar likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I use omnipod and dexcom G7. At 70 years old, I am fortunate to get the full 80 hours with each Omnipod which translates into three pump changes every 10 days. This works very well with the 10 day G7. I am also able to build up extra pods. I also use an open source AID algorithm so do not have to worry about having both CGM and pump on the same side of the body.
    • 7 hours, 42 minutes ago
      Anita Stokar likes your comment at
      If compensation were offered for research participation, what format would you prefer?
      It depends on the travel distance. The longer the distance the more important the reimbursement it is the total deal. If it's across the street keep the money. If it's across the country we need to talk.
    • 2 days, 2 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Every 9 days I have to have to change an infusion set after one day use to switch the sensor to the other side - come on deccom you can do better
    • 2 days, 2 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 2 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change infusion sites every other day rather than every 4th day. I’ve been doing this for years after I started to see my insulin requirements increase dramatically on the 3rd day. It’s not really “earlier than recommended” since my endo agrees with this schedule and writes my prescriptions to accommodate it.
    • 2 days, 2 hours ago
      Ahh Life likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I usually extend them rather than cut their longevity short. I am insulin resistant and if I don't refill pump at day 2 I can't get to day 3-4. So, I usually use it a day longer than instructed due to the refill. And before moving to G7 I would restart my CGM and get an average of 14 days with some rare, 21 day uses in the mix. Sadly, Dexcom has figured out how to make more money off us by forcing a restart every 10 days with a transmitter built in.
    • 2 days, 4 hours ago
      Molly Jones likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 2 days, 7 hours ago
      Lawrence S. likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 8 hours ago
      Daniel Bestvater likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 9 hours ago
      dholl62@gmail.com likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 2 days, 10 hours ago
      TEH likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Sites on my legs seem to get irritated with resultant higher glucoses by day 2, so I often change out these sites every 2 rather than 3 days.
    • 2 days, 10 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 10 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 2 days, 10 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 10 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 2 days, 11 hours ago
      atr likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 11 hours ago
      Chrisanda likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 3 days, 2 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 3 days, 2 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 3 days, 5 hours ago
      Mary Thomson likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 3 days, 5 hours ago
      TEH likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 3 days, 6 hours ago
      Kristi Warmecke likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 3 days, 8 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      I don't have problems reading published results. I'm more concerned with information that doesn't get published or is just left out.
    • 3 days, 8 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      Why would you want to restrict plain language disclosure to participants? How about plain language for everybody?
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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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    Samantha Walsh

    Samantha Walsh has lived with type 1 diabetes for over five years since 2017. After her T1D diagnosis, she was eager to give back to the diabetes community. She is the Community and Partner Manager for T1D Exchange and helps to manage the Online Community and recruit for the T1D Exchange Registry. Prior to T1D Exchange, Samantha fundraised at Joslin Diabetes Center. She graduated from the University of Massachusetts with a Bachelors degree in sociology and early childhood education.

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    26 Comments

    1. Kathy Hanavan

      I feel grateful to answer “not concerned”. I have Medicare and a supplement and my OOP expenses are low once my deductible is met.

      1
      2 years ago Log in to Reply
    2. john36m

      I am on Medicare with a Supplemental and Rx policy. I am on the Omnipod 5, which Medicare does not consider to be a pump. So it goes on my pharmacy plan and the co-pay is 20%. That’s a lot.

      2 years ago Log in to Reply
      1. Annie Wall

        I’m surprised you’re not being charged the $35 co-pay for one month of insulin, not 20%.

        2 years ago Log in to Reply
    3. Lyn McQuaid

      I answered “not at all concerned” because, for any month other than January, I have already met my part of our family’s deductible and my pump/CGM supplies are covered 100% but the first orders in January where I haven’t met that $600 deductible yet is expensive.

      2 years ago Log in to Reply
    4. Lindsey Whitnell

      I answered not concerned because I understand the cost, not because the supplies will be budget-friendly necessarily.

      1
      2 years ago Log in to Reply
    5. cynthia jaworski

      I answered “other” because while I am not concerned about my NEXT set of supplies, I remember how insulin pries skyrocketed in the last decade. This week my insurance denied a prescription for Afrezza, saying my diabetes treatment is adequate as it is. As a result, I feel uncomfortable about access to better control. I remember a time when using more than 4 finger-sticks a day was not supported by my insurance company.

      So it is a financial decision: do I simply pay for things out of my own pocket?

      3
      2 years ago Log in to Reply
    6. MT

      My employer offers a high deductible plan and even after the deductible we still pay 20%. The costs are brutal. I spend lots of time searching for coupons to make it more affordable. They are out there but I’m searching for them on my own and it gets a bit time consuming since 90day pharmacy won’t accept coupons so most of my supplies are 30day and I’m getting them refilled monthly in order to stay out of the poor house! So is life!

      2 years ago Log in to Reply
    7. Joan Benedetto

      Fortunately, we have good insurance for our son, and a great supplement. Once we meet our deductible, the supplement covers our cost share.

      2 years ago Log in to Reply
    8. Tom Caesar

      Lets face it treating diabetes is expensive both for supplies and the complications it can bring. Thankfully the government has capped insulin at $35 otherwise the cost is almost $300 monthly. I’ve yet to find a part d plan that’s affordable and has good benefit. But I shouldn’t complain, before Medicare my insurance ran $800 monthly.

      2 years ago Log in to Reply
      1. Anita Stokar

        I know what you mean about not complaining. I am not on medicare yet, but I do worry what my prices for supplies will be once I am on it. Right now, everything for my diabetes supplies except my insulin is paid for 100%, but my monthly premium is a little over $500. That is a pretty penny for me, but luckily I am able to afford that.

        2 years ago Log in to Reply
    9. ConnieT1D62

      Not at all concerned for insulin, pump supplies, and cgm sullies. The insurance company that covers my Medicare Advantage plan doesn’t list Baqsimi on their formulary so I co-pay $90.00 a pop with RX from endo provider. However, a T1D diabetes sister freind who lives in another part of NYS has a Medicare plan that does cover Baqsimi monthly at little co-pay or no cost so she sends me extras from her supply. It pays to have one or two “dia-buddies” in your support network.

      1
      2 years ago Log in to Reply
      1. ConnieT1D62

        Typo alert … cgm supplies, not sullies … I wish we had a widow to correct typos …

        2 years ago Log in to Reply
    10. Ahh Life

      Not to be a Girl Scout expressing outrage over the organization’s commitment to cookies, but . . . I can afford the cookies. I am not as sure about insulin.

      And I am not so sure I can afford this American health care of rickety for-profit, not-for-profit, non-profit, who can get what pound of flesh from whom, sometimes organized / sometimes disorganized health care system? Getting better? Yeah, but. ⛏🛠

      1
      2 years ago Log in to Reply
    11. Kate Kuhn

      I am always concerned that I might have to purchase a sensor if I have to remove one unexpectedly.

      2 years ago Log in to Reply
    12. Mick Martin

      Although I selected “Not at all concerned” I thought I must explain that. I live in the UK (United Kingdom of Great Britain and Northern Ireland) where all of my diabetes supplies are paid for by our NHS (National Health System), which is financed via direct taxation of all working people that earn more than a basic level.

      1
      2 years ago Log in to Reply
    13. Karen DeVeaux

      After 3 years on Medicare including Part B, D, and a supplemental I’ve finally learned that Part D is costing me so I’m disenrolling. I went to pick up a pump and they wanted about $500, because I have Part D but if I didn’t have it they would file it against Part B and be free!

      2 years ago Log in to Reply
      1. Sherrie Johnson

        I would look into that before you let it go because I was told if you don’t have part D you’ll get penalized for it. If you get it again I don’t know more things to look at but my pump and all my supplies go under part B I pay nothing because I have a supplement, Blue Cross anthem plan F

        2 years ago Log in to Reply
    14. Clearblueskynm

      I’m 53, not worried for the next set of supplies, BUT very concerned as each year goes by that Medicare will never get their act together for diabetes care. 65 is not too far away anymore, and the pace of any government change for the good of the people is slow at best.

      2 years ago Log in to Reply
    15. Russell Buckbee

      We responded not concerned, but we are toward the upper income level or those with diabetes, Many are very worried. As a social worker I’ve met many who could not get insulin or supplies. We need universal health insurance and could pay for it by removing all of the complex systems to get care. Why do we need to have “Health Care Advocates” paid full time to help people get health care? NO universal care.

      2
      2 years ago Log in to Reply
    16. Steven Gill

      With no insurance since I retired I paid an average $190-200 for insulin and a CGM (Libre3) through Amazon and GoodRX at Wal-Mart. With that said a week ago ordered a 2nd order through the VA pharmacy. Unsure if this idiot did it right, was counting out the units, test strips, and the last prescription for the CGM when the insulin arrived; just got a notification the rest is enroute.

      With that said I think it’d be foolish never to think about supplies.

      2
      2 years ago Log in to Reply
      1. Joindy23

        If you’re still uninsured-go to the website of the insulin manufacturer that you use OR call them, and they’ll send you a voucher to get insulin for $ 35/month. You must be uninsured & paying cash to qualify. Abbott (Libre) & Dexcom also have reduced prices for the uninsured- call them !

        2 years ago Log in to Reply
    17. John McHenery

      My costs are covered by the UK National Health Service

      2 years ago Log in to Reply
    18. Jeff Balbirnie

      Deadly afraid. Two insurance companies both deliberately denying they are “primary”. Both now refuse to pay for anything even the mandatory stuff.

      2 years ago Log in to Reply
      1. Anita Stokar

        🙁

        2 years ago Log in to Reply
    19. lenglish@cimginc.com

      Not concerned at this time…will be retiring in 3 years and starting to do research on what needs to be done and what the costs will be.

      2 years ago Log in to Reply
    20. Joindy23

      Very concerned because I must get CGM supplies through mail order with a medical supply company. I’ve been using Solara (which is owned by Adapt Health) and they’ve repeatedly overcharged me for supplies. I’m looking for a new supplier- any suggestions ??

      2 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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