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    • 1 hour, 48 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, 12 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, 12 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, 12 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, 13 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, 15 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, 18 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, 19 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, 20 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, 21 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, 21 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, 21 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, 21 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, 21 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, 22 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, 22 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, 13 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, 13 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, 15 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, 16 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, 17 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, 19 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, 19 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, 20 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, 20 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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    Do you feel like the financial costs associated with T1D require you to make sacrifices in other areas of your life?

    Home > LC Polls > Do you feel like the financial costs associated with T1D require you to make sacrifices in other areas of your life?
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    Do you currently have a kit containing the T1D supplies you would need in case of a natural disaster or emergency?

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    If you are a caregiver to a child with T1D, how old is your child?

    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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    41 Comments

    1. Jneticdiabetic

      I’m fortunate to have good insurance through my husband’s employer. However, I met several T1D and T2Ds at an event this weekend who were struggling and couldn’t get insurance to cover and/or couldn’t afford a CGM. 💔 Anyone have any advice on this? Appreciate it!

      4 years ago Log in to Reply
      1. Wanacure

        1. Get then involved in working for a version of Medicare for All in their state. They can also get involved in the national Medicare for All movement. 2. With the shortage of workers, tell them to look to the Federal Government for a job. Even as just a clerk-typist I got excellent medical coverage when working full time for Small Business Administration. Familiarity with Windows OS and data input is probably a useful skill in any gov agency. Or look to city, state or county governments for openings.

        4 years ago Log in to Reply
    2. Jane Cerullo

      Not happy since switching from pump to MDI as required to pay co pay for insulin. Also pay for Iport, needles etc. but was my choice and am happy so far. Not being attached to a pump is freeing. Even omnipod gave me problems and was cost prohibitive on Medicare. Am waiting for InPen so I can follow my numbers on their app like a pump.

      1
      4 years ago Log in to Reply
      1. Kris Sykes-David

        I have an InPen and think it’s great! T1D for almost nine years and MDI the whole time. The InPen really makes a difference! I hope you can get one soon. I pay only $35/ year. In February, I turn 65, we’ll see what happens then with the cost.

        4 years ago Log in to Reply
    3. Cheryl Seibert

      I answered “Sometimes”. I am blessed with insurance that covers 80% of my insulin pump supplies and a $60 copay for 90day supply for insulin. However, that money has to be available, so we plan our purchases. My husband also has high medical expenses. I am approaching Medicare age in a few years, so it worries me the cost will skyrocket.

      4 years ago Log in to Reply
    4. Joan Fray

      I have a kaiser plan through Medicare and I pay 20% of everything I get. It’s ok. Better than being dead i suppose. Although sometimes………..

      2
      4 years ago Log in to Reply
    5. Vicki Breckenridge

      I’ve been so fortunate. I’ve always had fantastic insurance coverage. It’s even better for me now that I have original Medicare and a supplement.

      2
      4 years ago Log in to Reply
    6. Sasha Wooldridge

      If I didn’t have to pay higher insurance premiums, plus multiple prescriptions and dr visit copays that otherwise healthy people wouldn’t need, I’d have a new car. As it is, all those things combine average to a couple hundred dollars more than a new car payment would be each month. I keep hoping, but it’s been 7 years and I still haven’t been able to make it happen. Frustrating to say the least.

      4 years ago Log in to Reply
    7. Lyn McQuaid

      I feel very fortunate to have good insurance coverage at this stage in my life (age 49). However, when I was in my early 20’s and just starting out, I had crappy insurance but my father was also T1D so he would give me a box of test strips or a vial of insulin from his supply when I was low on cash. I was always grateful for that.

      4 years ago Log in to Reply
    8. Janice Bohn

      My husband is disabled so has been unable to work the last 20 years, and I make a modest income. The cost of healthcare has impacted our lives in these ways.
      Moved from our lovely home to a two family flat in the city so we get some additional income. No cable/sati lite, Netflix or the like – just plain tv, my brother has us on his family plan for phone, no high speed internet, we do not travel. Our one splurge is to eat out lunch on Saturday, lunch is more reasonable.
      With those “sacrifices” I have been able to have a pump, CGM and afford all our care.
      We are very content and do not need much to enjoy our lives so living modestly is really not a problem. I feel very fortunate as others have much greater struggles!

      9
      4 years ago Log in to Reply
      1. Wanacure

        Does your county or city library offer free computer access?

        4 years ago Log in to Reply
    9. TomH

      While I answered “no”, my insurance covers nearly all costs, I know several people that aren’t covered well or whose insurance does not cover many costs. They get stretched pretty well and there’s definitely financial impacts!

      4 years ago Log in to Reply
    10. mojoseje

      The cost of pump and CGM supplies has definitely impacted my financial health—especially since my husband was permanently laid off because of the pandemic. We could no longer afford our great insurance and my copays for insulin, pump, and CGM supplies are now $300/month. On 1/3 less salary, we are struggling to make it to retirement while watching our savings melt away.

      1
      4 years ago Log in to Reply
    11. Daniel Bestvater

      I answered yes.
      I owned a small business in Canada and have no coverage. I’ve tried to get coverage but due to an existing condition I have always been rejected.

      4 years ago Log in to Reply
    12. Marty

      I feel very lucky to have original Medicare with a supplement that covers copays and deductibles for insulin and diabetes supplies. My premiums aren’t cheap, of course, but I’m still very grateful to be free from worry about how to cover these expenses.

      4 years ago Log in to Reply
    13. Kris Sykes-David

      I answered sometimes. With federal BC/BS, my co-pays aren’t too awful. I have been keeping track on T1D expenditures for 2022 since I turn 65 in February and could choose straight Medicare or keep the Federal insurance. $ 1500 so far and I don’t have a pump, only MDI and InPen, and Dexcom CGM. Getting an OP5 would increase costs significantly.

      4 years ago Log in to Reply
    14. Lawrence S.

      I have not had to make sacrifices in other area of my life because of the financial costs of my T1D. The deductibles and copays are within my financial means. I have a Medicare, and a “mediocre” secondary insurance. But it keeps my head above water.

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

        Sorry, I need to do a better job proof reading my statements.

        4 years ago Log in to Reply
    15. Teri Morris

      I understand in Europe diabetes expenses are covered. I have spent 20 years at the company I work for, due to their health coverage. I’ve got to have that, and can’t entertain the possibility of retirement. I’m very lucky to have help, as my parents had none when they raised me. We only took one vacation that I can remember. I do wish my health insurance through work covered CGMs though. They don’t recognize them as being as important as a pump for life-saving, life-extending, complication-less-likely treatment. At ~$120 every ten days I can’t afford to CGM!

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

        If I may, I would suggest that you keep after your insurance company about the CGM. Many insurances cover CGM’s. My insurance company wouldn’t cover a CGM until I broke my ankle and lost a month from work from a low sugar fall. Then, they decided the CGM was worth it. I wish you good luck.

        1
        4 years ago Log in to Reply
    16. Bob Durstenfeld

      I am looking forward to the new legislation that caps out of pocket costs for Medicare part D and Insulin. Some years NY total medical costs have exceeded $15,000.

      2
      4 years ago Log in to Reply
    17. Ken Raiche

      That goes without saying if I didn’t have to spend the amount of money on my T1D it would definitely help in all aspects of the word.

      4 years ago Log in to Reply
      1. Donal Conway

        I have always found that and after 52 years with T1, it has taught me to be very economicial with my costs on every aspect of spending for

        1
        4 years ago Log in to Reply
    18. Sherrie Johnson

      Medicare and Anthem plan F cover it all except part D,which now omnipod falls under. To that I will not be trying the Omni when pumps are fully covered under Part B. Trying to simplify my life this doesn’t help.

      4 years ago Log in to Reply
    19. TEH

      I selected sometimes. While on private insurance at $1,500/ month, it was harder. When we stepped onto medicare with Anthem suplement and part D, our health care costs dropped to 1/3 of that. So, it depends on your prospective on if Medicare is expensive or not. Additionally, the mailorder Part D we have is a fraction of over the counter Rx costs.

      4 years ago Log in to Reply
    20. Eva

      It is not just the cost of the insulin, glucose tabs, pump supplies and test strips, it is also the increased cost associated with eating healthier (whole foods & gluten free) that makes me scrimp on clothes, electronics, vacations etc… Not that I care, because I really don’t need the latest apple phone or a new car.

      5
      4 years ago Log in to Reply
    21. Tina Roberts

      Absofreakinglutely!!!!!!! Sensors and pump supplies are outrageously expensive!!

      3
      4 years ago Log in to Reply
    22. Magnus Hiis

      Definitely, much of the pharmacy costs are taken care of the government but it’s much more, days that you can’t because of diabetes, to sign an insurance I pay at least the double amount compared to non diabetics and I can’t take a life insurance. The costs for treating lows, eating regularly, to have technical devices that is necessary for getting my diabetes optimized, doctors appointment, sick days etc

      2
      4 years ago Log in to Reply
    23. Janis Senungetuk

      YES! The impact of T1D expenses has made a tremendous difference in available choices over the past 67 years. Now at 76, the struggle has become even harder as savings are depleted from skyrocketing increases in living expenses in addition to the continual medical costs.

      6
      4 years ago Log in to Reply
    24. Diana L.

      Medicare covers all the costs for pump users . I also have a good supplemental plan that covers CGM use, it is $250/month

      4 years ago Log in to Reply
    25. Mick Martin

      Although I answered “No” it SHOULD BE ‘Not Applicable’ as I live in the UK and our NHS (National Health Service) pays for all of my diabetes costs. (The NHS is funded via direct taxation of all working people.)

      2
      4 years ago Log in to Reply
    26. Patricia Dalrymple

      I said No. I have worked in higher Ed for a college that pays for everything but my pump and supplies (I pay 20%). I have no children – I’m not sure I can say I’m fortunate for that – just didn’t work out for me. I’ve been fortunate to be able to save a lot of my salary. My husband and I don’t overspend for things.

      4 years ago Log in to Reply
    27. Molly Jones

      I answered No, but it is a constant thought of myself and my spouse, so if anything, maybe a sacrifice in a feeling of ease.
      I remember in my early twenties making sacrifices in many areas before qualifying for disability for epilepsy. Trying to save money in areas that would take you back a century at least. I still couldn’t afford medication and was thankfully given the most inexpensive phenobarbital from my neurologist who saw me for free.
      I am very grateful now with the insurance my husband has and also to have had the previous experience. I can empathize with others but am grateful not to live in areas of the world who lack doctors almost completely.

      1
      4 years ago Log in to Reply
    28. John McHenery

      Most costs covered by UK National Health Service

      2
      4 years ago Log in to Reply
    29. Steven Gill

      I “downsized” this last year (sold a house moved into an apt off my brother’s garage) not wholly for financial reasons. So I’m much better off but dropped the CGM supplies due to costs for 3 years. Still, I joke I’m wearing my car.

      4 years ago Log in to Reply
    30. elsa

      Absolutely, because these costs add up to a significant amount of the monthly budget. Insurance premiums are higher (always have to choose a more expensive plan), and monthly costs other than premiums are higher (more doctor’s visits, lots of prescription costs). Unexpected costs are inevitable given the delays and restrictions we are subjected to by insurance/PBM and DME suppliers—which have resulted in me paying full price out of pocket twice this year for pump supplies, once for insulin, and once for blood work despite planning ahead, knowing how to navigate insurance, and having an ACA Gold tier plan in New York with a monthly premium that is just under $1,000/month.

      4 years ago Log in to Reply
    31. AnitaS

      I am very fortunate to have insurance that covers most of my diabetes supplies, so my answer was no.

      4 years ago Log in to Reply
    32. mbulzomi@optonline.net

      No. I’m very fortunate that all my expenses are covered by Medicare Part “B” and my secondary insurance, Federal Employee Program, Blue Cross Blue Shield.

      1
      4 years ago Log in to Reply
    33. Krystal Udey

      Thankfully my employer does a good job of keeping my costs low through Rx and insurance plans. When I was younger though, I had a very strict budget where I broke my pump supply payments into small chunks. Otherwise I could not afford rent or geroceries.

      4 years ago Log in to Reply
    34. PamK

      It has, especially when money is tight, if you know what I mean.

      4 years ago Log in to Reply
    35. Luna

      Living with T1D can lead to tough financial choices that affect other parts of life. For practical tips on budgeting and managing money effectively, https://ktonline.my/ offers robust financial insights.

      1 year ago Log in to Reply

    Do you feel like the financial costs associated with T1D require you to make sacrifices in other areas of your life? Cancel reply

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