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    • 19 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, 11 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, 11 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, 11 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, 11 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, 13 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, 17 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, 18 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, 19 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.
    • 1 day, 19 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.
    • 1 day, 20 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.
    • 1 day, 20 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.
    • 1 day, 20 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
    • 1 day, 20 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. 🍄🦋
    • 1 day, 20 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🧸
    • 1 day, 20 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🧸
    • 2 days, 12 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, 12 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, 14 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, 14 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, 16 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, 17 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, 17 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, 19 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, 19 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?
    Previous

    If you wear both an insulin pump and a CGM, how often do you put both devices on the same area of your body? (ex: pump site and CGM in the same section of your abdomen, both on the same arm, etc.)

    Next

    Before you were diagnosed with type 1 diabetes, did a healthcare provider tell you that you had prediabetes, or inform you that you had elevated blood glucose levels?

    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. Retired and glad

      Good Medicare Advantage plan insurance!

      3
      5 years ago Log in to Reply
    2. Sahran Holiday

      July 1 my insurance CIGNA changed the vendors for DME and raised prices. The vendors Express Scripts and Edgepark are incoherent, careless. I pay 19% of my net salary for employer provided health coverage. Switching the end of this year.

      1
      5 years ago Log in to Reply
    3. Gerald Oefelein

      With traditional Medicare my pump and CGM supplies are covered as Part B Durable Medical Equipment with Medicare paying 80% and my CIGNA supplemental insurance paying the remaining 20%.

      1
      5 years ago Log in to Reply
    4. George Lovelace

      Just a little concerned with possible Medicare changes

      1
      5 years ago Log in to Reply
    5. Karen Maffucci

      Since I have been on Medicare on May 1st it has been extremely stressful and financially challenging. The costs may force me to go back to multiple shots a day.

      3
      5 years ago Log in to Reply
    6. Lawrence Stearns

      For the time being, I am getting the supplies I need that are covered by Medicare and my supplemental UHC insurance.
      However, I’ve gone through two Dexcom receivers that stopped working. Medicare will not pay for another for 5 years. I bought a new telephone so I could use the Dexcom G6 app. The app kept losing the transmitter signal and didn’t work properly.
      Otherwise, cost is not currently my major concern. My currently problems is getting my supplies (CGM) on time from Edgepark.

      2
      5 years ago Log in to Reply
      1. Bob Durstenfeld

        Call, Dexcom, there is a simple setting on your phone that fixes the lost signal.

        2
        5 years ago Log in to Reply
    7. ConnieT1D62

      I answered “A little concerned”. Am on Medicare with a fairly decent Advantage plan, but am in the donut hole so things are bit more pricey. I wish they would just get rid of the donut hole nonsense and evenly distribute reasonable payments across the entire 12 month period so senior adults with T1D can plan and budget accordingly. Our spending needs don’t change when we reach the “donut hole”; in fact because T1D is an ongoing expensive health concern we often reach the donut hole by mid-year and then we are stuck with having to pay more for what we need to stay alive.

      5
      5 years ago Log in to Reply
    8. Eadie Laro

      My greatest concern is receiving my supplies at the appropriate time.

      4
      5 years ago Log in to Reply
    9. Mary Dexter

      Negotiating the coordination of doctor’s office, insurance company, and third-party DME is stressful. Their stories don’t jive so I wonder who is lying or if anyone is telling the truth. Tuesday everything is fine; then Friday 4PM I am told my order cannot be shipped, and this pattern repeats week after week until just before I will no longer be able to use my CGM because my transmitter will expire or I won’t have sensors, and then they relent. I get my stuff, but the next time I need stuff, the cycle begins again.

      4
      5 years ago Log in to Reply
    10. Natalie Daley

      Although we have reasonable retirement earnings, my copay for insulin despite Medicare and bridge insurance is over $700 every other month. I’ve stopped eating lunch, which eliminates a dose of novolog and lowers my Tresciba. I’ve lost 25 lbs over the years, lowered my A1C. If I get hungry, I have a non-carb snack such as nuts or coffee with a splash of milk.

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

        There are other’s who do the same. I’m one of them.
        If it weren’t for the cost of my Novolog, my Medicare Advantage plan would be awesome. They cover none of it though, because it’s not on their formulary & I am allergic to Humalog.

        5 years ago Log in to Reply
    11. Bob Durstenfeld

      Supplies have been part of or budget forever. That does not mean they are affordable. We give up other things.

      2
      5 years ago Log in to Reply
    12. Tom Caesar

      It costs me roughly $14 per day for supplies, mainly towards insurance that covers CGM, pump, and insulin needs. My prescription insurance has a $400 yearly deductible and my first vial eats up most of that, no help from medicare. After that the price drops to $25 per vial until the doughnut hole pushes it up to $100. Try to get samples from my Dr each visit. Having diabetes for over 50 years the total cost is enormous! PS had very poor service from Edgepark, US Medical so much more organized.

      5 years ago Log in to Reply
    13. Anthony Angel

      Due to a “surgery” I had due to diabetic retinopathy my copay and out of pocket have all been met. So I am good at least til the end of the year.
      .

      1
      5 years ago Log in to Reply
    14. Sjoymex

      Right now I’m blessed with great insurance and a full time job. However in the past I have had to either go without, minimize the amount of supplies used, or even sell belingingdms in order to afford insulin, strips, etc.

      5 years ago Log in to Reply
    15. Mick Martin

      Not at all concerned as I live in the United Kingdom of Great Britain and Northern Ireland so do not have to pay anything for my diabetes supplies. (They are paid for by our NHS (National Health Service), which is financed via direct taxation of all working people.

      1
      5 years ago Log in to Reply
    16. Sadie Robinson

      I am concerned because the supplies to maintain safe levels of blood glucose are expensive on a fixed income. Those of us that try to keep up with the technology have struggles.

      5 years ago Log in to Reply
    17. Henry Renn

      I’m in Medicare. If I had to pay for majority of supplies I’d have to go back to MDIs.

      5 years ago Log in to Reply
    18. Ahh Life

      The costs referenced by most here are the direct peel-off-the-dollar-bills to pay someone costs. However, as we’re learning about crypto currency, money in the digital age does not have to be foldable.

      The cost that everyone hints at but never explicitly mentions is the “time costs” of the American medical system. The time spent waiting on the phone; the time spent talking to medicare; the time spent talking to secondary insurance; the time spent talking to MD’s; the time spent talking to CGM vendors; the time spent talking to pump vendors; the time spent talking to pharmaceutical companies; the spent talking to local drug stores.

      Now multiply all those times together, since in each and every case someone is on the other end of the phone with you. They waste time calling each other trying to get “the other guy” to pay for something.

      I do not know what your time nor mine is worth. But you could estimate the physician’s time, the insurance guy’s time, etc. etc. When all is said and done, it amounts to a time tax. It doesn’t appear to have a monetary value, but, boy, does it cost a lot. ¯\_( ͡❛ 益 ͡❛)_/¯

      5 years ago Log in to Reply
    19. Janice B

      As others have stated above coverage of care and supplies is very dependent on the particular insurance plan people are on. Right now I am covered well, but through out my 25 years I have had many different company supplied insurance plans some of which were so expensive I was struggling to pay for MID.

      5 years ago Log in to Reply
    20. Ronald Troyer

      while I’m not particularly concerned about affording it I will say that because of Medicare’s restrictions on ordering cgm supplies I’m concerned that I won’t receive them in time for my next extended time away from home. When traveling it’s especially hard to get that timing right. There should definitely be some provision for this

      5 years ago Log in to Reply
    21. PamK

      As the end of the Recovery Act comes closer I am very concerned. We have not been recalled to work yet, and finding new jobs at our ages is difficult. Not sure what we will do.

      5 years ago Log in to Reply
    22. Dorian Dowell

      Fortunately, I receive supplies and equipment via the VA. Hopefully, this doesn’t change!

      5 years ago Log in to Reply
    23. Adam Wright

      I more concerned FedEx is going to lose them again and give me the run around. The regional facility in my area is known for shipping packages by mistake across the country. There are multiple reviews stating it is the Bermuda Triangle of FedEx.

      1
      5 years ago Log in to Reply
    24. Antsy

      My supplies are affordable; I’m lucky to have great insurance. MY problem is receiving them safely & securely each time. Medtronic uses only UPS, and I learned yesterday drivers are not supposed to ring a doorbell when they leave a package UNLESS the shipper pays extra to require a signature. Now I know why they ignored the sign I’d taped on the door, asking them to ring before leaving.. I stay home when I know supplies are supposed to arrive, as we’ve had packages stolen before (including pump supplies) when we were home, despite signing up for UPS notifications. Thieves are fast here.. I think I’ve talked Medtronic into requiring a signature every time (without requiring a lengthy phone call every 3 months). We’ll see if it works. One would think getting a driver to ring a dang doorbell when they leave expensive medical supplies should be easy for the user to request, but it isn’t. If it happens again, I’ll switch to Tandem and Dexcom so most supplies will come from my pharmacy. Time for a new pump anyway…

      5 years ago Log in to Reply
    25. Wanacure

      I contribute to groups that are working to preserve and expand social security and Medicare for all. I hope at least future American generations will have single payer universal health care. There are other countries where private health insurance companies are required to be non-profit. Result? Better health care for more people at half the cost of US health care. It took organized political struggle to get social security and to finally get Medicare. Why stop now?

      5 years ago Log in to Reply
    26. NAK Marshall

      My Medicare plan is great. I am lucky. I did at one time in my career leave a job I loved at a non-profit and return to teaching in a public school for the health insurance though. At one time in my late 30’s I was on the “Colorado Health Insurance for the Uninsurable,” which cost as much just for me as the insurance we had for the 3 other members of our family.

      5 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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