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    • 4 hours, 39 minutes ago
      Ahh Life likes your comment at
      If compensation were offered for research participation, what format would you prefer?
      Unmarked non-sequential bills under the table is preferred. Cash plus free insulin or CGMs would be fine too. Eversense is really missing out on an opportunity by not partnering with trials to offer a free E365 and insertion to get people to try their device.
    • 1 day, 15 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
    • 1 day, 15 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🧸
    • 1 day, 15 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.
    • 1 day, 16 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.
    • 1 day, 18 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.
    • 1 day, 21 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🧸
    • 1 day, 22 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🧸
    • 1 day, 23 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 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 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 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 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 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, 1 hour 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, 1 hour 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🧸
    • 2 days, 16 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.
    • 2 days, 16 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.
    • 2 days, 18 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.
    • 2 days, 19 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
    • 2 days, 20 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
    • 2 days, 22 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.
    • 2 days, 22 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?
    • 2 days, 23 hours ago
      Sarah Berry 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, 23 hours ago
      Sarah Berry 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
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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.

      4 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
      4 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.

      4 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
      4 years ago Log in to Reply
      1. Kathy Hanavan

        So frustrating for you! This is truly unacceptable.

        1
        4 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
        4 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
      4 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
      4 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
      4 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
      4 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
        4 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
        4 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?

      4 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
      4 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.

        4 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
      4 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!!!

      4 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.

      4 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.

      4 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
      4 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.

      4 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
      4 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
      4 years ago Log in to Reply
    19. Nevin Bowman

      Ask in December 🙂

      3
      4 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
      4 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!

      4 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
      4 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.

      4 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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