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    • 7 hours, 46 minutes ago
      KCR likes your comment at
      How often does diabetes disrupt your sleep?
      Almost every night, my sleep is interrupted, at least 9 times out of 10 nights. My BG drops and the T:slim pumps insulin on the down slide until I get to 70 before it stops. It is, in my opinion, a flaw in the algorithm. I don't understand why the algorithm can see the continuous drop in BG. I have numerous screen captures of this situation. I have gotten into the habit of checking my BG right at bed time. Even taking some carbs at bedtime doesn't prohibit lows at night. It is literally exhausting.
    • 8 hours, 26 minutes ago
      TEH likes your comment at
      How often does diabetes disrupt your sleep?
      Lows wake me up. The CGM alarm system kicks in if my body doesn’t. I will shut the alarm system off after I’ve treated the low because gastroparesis slows absorption and that alarm can continue needlessly for another hour until the is sufficiently corrected.
    • 23 hours, 9 minutes ago
      Ahh Life likes your comment at
      How often does diabetes disrupt your sleep?
      Lows wake me up. The CGM alarm system kicks in if my body doesn’t. I will shut the alarm system off after I’ve treated the low because gastroparesis slows absorption and that alarm can continue needlessly for another hour until the is sufficiently corrected.
    • 23 hours, 9 minutes ago
      Ahh Life likes your comment at
      How often does diabetes disrupt your sleep?
      Diabetes doesn't necessarily interrupt my sleep per se. Its always the darn dexcom G7 losing signal at random waking me up.
    • 23 hours, 10 minutes ago
      Ahh Life likes your comment at
      How often does diabetes disrupt your sleep?
      Occasionally from lows - the biggest disruption is the every 3 day reminder to change my pump that goes off at 2am
    • 1 day, 4 hours ago
      Lawrence S. likes your comment at
      How often does diabetes disrupt your sleep?
      Lows wake me up. The CGM alarm system kicks in if my body doesn’t. I will shut the alarm system off after I’ve treated the low because gastroparesis slows absorption and that alarm can continue needlessly for another hour until the is sufficiently corrected.
    • 1 day, 4 hours ago
      Lawrence S. likes your comment at
      How often does diabetes disrupt your sleep?
      Occasionally from lows - the biggest disruption is the every 3 day reminder to change my pump that goes off at 2am
    • 1 day, 4 hours ago
      Lawrence S. likes your comment at
      How often does diabetes disrupt your sleep?
      Almost every night, my sleep is interrupted, at least 9 times out of 10 nights. My BG drops and the T:slim pumps insulin on the down slide until I get to 70 before it stops. It is, in my opinion, a flaw in the algorithm. I don't understand why the algorithm can see the continuous drop in BG. I have numerous screen captures of this situation. I have gotten into the habit of checking my BG right at bed time. Even taking some carbs at bedtime doesn't prohibit lows at night. It is literally exhausting.
    • 1 day, 6 hours ago
      Marty likes your comment at
      How often does diabetes disrupt your sleep?
      Diabetes doesn't necessarily interrupt my sleep per se. Its always the darn dexcom G7 losing signal at random waking me up.
    • 1 day, 7 hours ago
      D-connect likes your comment at
      How often does diabetes disrupt your sleep?
      Almost every night, my sleep is interrupted, at least 9 times out of 10 nights. My BG drops and the T:slim pumps insulin on the down slide until I get to 70 before it stops. It is, in my opinion, a flaw in the algorithm. I don't understand why the algorithm can see the continuous drop in BG. I have numerous screen captures of this situation. I have gotten into the habit of checking my BG right at bed time. Even taking some carbs at bedtime doesn't prohibit lows at night. It is literally exhausting.
    • 1 day, 8 hours ago
      atr likes your comment at
      How often does diabetes disrupt your sleep?
      Almost every night, my sleep is interrupted, at least 9 times out of 10 nights. My BG drops and the T:slim pumps insulin on the down slide until I get to 70 before it stops. It is, in my opinion, a flaw in the algorithm. I don't understand why the algorithm can see the continuous drop in BG. I have numerous screen captures of this situation. I have gotten into the habit of checking my BG right at bed time. Even taking some carbs at bedtime doesn't prohibit lows at night. It is literally exhausting.
    • 2 days, 3 hours ago
      KarenM6 likes your comment at
      Since starting on a CGM, has your healthcare provider’s frequency of ordering A1C testing changed?
      T1D comes with more than its fair share of dystopian grace notes. However, the indefatigable frequency of A1c testing seems to go on forever. I started with the Medtronic CGM dubbed "The Harpoon" in 2006. Tests and frequencies have not changed an inch in 20 years. (¬////¬)
    • 2 days, 8 hours ago
      Natalie Daley likes your comment at
      Since starting on a CGM, has your healthcare provider’s frequency of ordering A1C testing changed?
      T1D comes with more than its fair share of dystopian grace notes. However, the indefatigable frequency of A1c testing seems to go on forever. I started with the Medtronic CGM dubbed "The Harpoon" in 2006. Tests and frequencies have not changed an inch in 20 years. (¬////¬)
    • 2 days, 9 hours ago
      Lawrence S. likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      Often? Try Always! I only see my doc 1x a year to legally fill Rx. Otherwise I manage 100% on my own and make all my own dosing adjustments.
    • 2 days, 9 hours ago
      Lawrence S. likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      My pump and I use the data to make adjustments at every meal, and even during the day, e.g. corrections. But I also use the data to track longer term trends and usage so that I can make adjustments to my pump regimen, bolus rates, correction rates, basal rates etc.
    • 3 days, 4 hours ago
      Amanda Barras likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      My pump and I use the data to make adjustments at every meal, and even during the day, e.g. corrections. But I also use the data to track longer term trends and usage so that I can make adjustments to my pump regimen, bolus rates, correction rates, basal rates etc.
    • 3 days, 7 hours ago
      kristina blake likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      As noted by Lawrence, isn’t that what CGM’s are for? I’m on MDI’s and a SmartPen. Data is what determines my doses.
    • 3 days, 8 hours ago
      Marty likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      My pump and I use the data to make adjustments at every meal, and even during the day, e.g. corrections. But I also use the data to track longer term trends and usage so that I can make adjustments to my pump regimen, bolus rates, correction rates, basal rates etc.
    • 3 days, 9 hours ago
      Mike S likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      This is one of those times when I want to ask T1DExchange ā€œwhat is the motivation behind this questionā€? What are you trying to learn from it?
    • 3 days, 9 hours ago
      Mike S likes your comment at
      Do you use your CGM data to help make adjustments in your diabetes management plan?
      As noted by Lawrence, isn’t that what CGM’s are for? I’m on MDI’s and a SmartPen. Data is what determines my doses.
    • 3 days, 20 hours ago
      Bekki Weston likes your comment at
      If you use a CGM, is it accurate on day 1?
      It takes a few hours to get close.
    • 3 days, 20 hours ago
      Bekki Weston likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      Usually when it's about to expire.
    • 4 days, 4 hours ago
      lis be likes your comment at
      How often do you adjust a planned physical activity because of how your glucose is trending?
      If I am above 150mg/dl don't need to carb up. If I am around 100mg/dl I definitely need to carb up. Aren't we always evaluating where we are and anticipating where we might land. That is part of active management.
    • 4 days, 8 hours ago
      Phyllis Biederman likes your comment at
      When I have a temporary signal loss with my CGM, it’s usually when I’m:
      For me it's compression lows - and that's it. I see that most complaints are about connection to phones. I don't (won't) use my phone. I have to have a work phone with me at least 60 hours a week, and I'm not interested in carrying (or wearing) two phones. I rarely lose connection between my Tandem X2 pump and the sensor/transmitter. Sometimes I will walk away while it's charging and take myself out of range, but that's on me.
    • 4 days, 9 hours ago
      Derek West likes your comment at
      What is the best spot for CGM accuracy
      Dexcom is ok with other locations if approved by your doctor.
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    How much did you spend out-of-pocket on all of your diabetes medications and supplies from the start of July through the end of September 2022?

    Home > LC Polls > How much did you spend out-of-pocket on all of your diabetes medications and supplies from the start of July through the end of September 2022?
    Previous

    In the past 7 days, how many nights was your sleep disrupted by device alerts, checking blood glucose levels, or treating a high or low?

    Next

    How often do you change what you eat based on your 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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    23 Comments

    1. Mick Martin

      I live in the UK (United Kingdom of Great Britain and Northern Ireland) where ALL of my diabetes medications and supplies cost me absolutely nothing. They are paid for by our NHS (National Health Service), which is financed via direct taxation of all working people.

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

        Yea for the UK! If I had an emoji, I’d put a thumbs up.

        5
        3 years ago Log in to Reply
      2. Mick Martin

        @ Lawrence S.

        Bless you, sir.

        I find it ‘strange’ and infuriating that I’ve spoken to people in the United States, who are no longer with us on this Earthly plane, who’ve died because they couldn’t afford such things as insulin. I wish I’d got the ‘answers’, but some people might object that everyone is paying for a service which they wouldn’t otherwise use.

        Be well, sir … and remain well.

        3
        3 years ago Log in to Reply
      3. KarenM6

        Indeed, Mick Martin!
        I wish I had answers, too.
        There was a TED talk from a young woman name of Brooke Bennett who gave 14 examples of the tragic results of insulin rationing. She said that insulin costs from $3 to $6 to make, yet it can cost (in the US) about $250 to $350 per bottle.
        There was another one by Connor Behr (TEDxSaltLakeCity) who said that 1 gram of gold is worth $41. 1 gram of insulin is worth $7850. He has an interesting way to fix the astronomical costs of insulin but also says a few things that are not 100% accurate. I wish I knew what year the talk was from, too.
        I can’t say that the numbers they give are accurate, but if they are even close, it is just… well, awful.
        In the US, we have a huge problem knowing that there are people who can’t afford or access life-saving medications.
        Thank you for being infuriated by a system that is so broken!

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

        @KarenM6,

        First of all, ma’am, I apologise for my tardiness in responding to your comment. I had my COVID-19 2nd booster vaccination on Wednesday and it ‘knocked me off my feet’, which each of the COVID vaccinations I’ve received have done to me. To me, that’s strange, as actually having COVID-19 didn’t have that affect on me. šŸ˜‰

        Even if the figures offered in the TED Talks were very ‘wide of the mark’ they are still accurate enough to ‘make the point’. The cost of insulin, in particular’ in this instance is utterly ridiculous, and a country as vast as The United States is SHOULD be looking at why the medicines-producing companies are allowed to ‘get away’ with such profiteering. (I did read, a few years ago, that California was in the process of allowing local production of insulin. I’m afraid that I didn’t ‘keep up’ with the story so I don’t know if anything came of that.)

        I’m afraid that my infuriation is based solely on what I know. I’ve lived, for the vast majority of my life in the UK, and even when I lived in other countries my medical coverage was paid for as I was a member of the UK Military Forces. (I will add that diabetes mellitus is one of a few chronic conditions that exist that get their prescriptions for free in the UK … I stipulate diabetes mellitus as their is another type of diabetes, diabetes insipidus, which has absolutely nothing to do with blood glucose levels, that is not covered. Apart from the few medical conditions that do get free prescriptions, the vast majority of the UK does have to pay for prescriptions, though these would be at a reduced cost of their ‘production’ cost …. or rather the price that the medicines-producing companies sell them for.)

        It makes me really bitter that such a wealthy nation as The United States can’t even look after those that NEED medications and ‘seemingly’ allowing them to die.

        1
        3 years ago Log in to Reply
    2. Annie Wall

      After meeting the Part B deductible, traditional Medicare and my supplement pay for everything so I paid $0 for supplies I purchased during the third quarter of the year.

      3 years ago Log in to Reply
    3. Robert Wilson

      This includes paid insurance premiums. $2300

      3 years ago Log in to Reply
    4. Jane Cerullo

      Insulin $210
      Iport $90

      3 years ago Log in to Reply
    5. Daniel Bestvater

      I live in Canada so all doctor visits are covered but medications and diabetes related equipment is not. I ran my own business so I do not have any coverage. Depending on the year I spent $8-15,000/year.

      3 years ago Log in to Reply
    6. Lori Lehnen

      $120 every 3 months for insulins. $0 for DME. Maybe $5 in smarties- my preferred correction for low blood sugar. About $5 for alcohol wipes, which I’ll sometimes use in summer for MDI.

      3 years ago Log in to Reply
    7. Sherolyn Newell

      I spent $0 on insulin and pump/CGM supplies, since I met my $3500 deductible back in March. I picked $1 to $350 to cover glucose tablets, alcohol wipes and the occasional package of glucose test strips for CGM backup.

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

      I’m surprised at the 25% of the respondents who pay out so much. I’m not including my payouts for insurance coverages. I’m in the $1-$250 category, with $55 for 90day supply of insulin. Insurance covers my Durable Medical Equipment (tubing, cartridges, cannulas’, etc. I also paid approx. $30-$35 for a new holster to hold my pump onto my belt. The old one broke. You should also include the cost of “mandatory” doctor’s visits every three months (thanks Medicare)($45 copay).

      3 years ago Log in to Reply
      1. KarenM6

        Hi Lawrence S!
        As a person who is in the “I pay way too dang much” category, maybe it will help to give an example. (?)
        My insurance has an $8000 deductible. So, until I meet the $8000, I pay 100% of all supplies and doctors’ visits. Then, after that deductible is met, I pay something like 30% of all costs as long as it is approved by the insurance. If the item or doctor is non-network but approved, I pay 60% of 70% plus the 30% they never pay… (at least, I think that’s how it works. It’s complicated and math-y and I’m truly not good at math.) I can also have situations where neither the doctor nor the item is approved or network, so then I pay 100%.
        I had 5 visits totaling about $1500 for a procedure that the insurance paid nothing for. I also had 3 visits where they paid about $150 for $600 in charges.
        After deductibles and insurance starts paying for supplies, I still pay something like $150 for insulin for a 3 month supply. My insurance only covers a portion of my DME as long as I get the DME from an approved provider.
        I haven’t included the per paycheck premium. For next year, my deductible is going up to $12,000… at that point, I’m not even sure why I use insurance.
        I recognise that I am _lucky_ that my situation is one where I can afford to do all these out-of-pocket charges! But, next year might be the first year I will have to get creative or “ration” supplies or maybe not go to doctors as often as they would like.
        I hope that helped and I didn’t confuse things more!!! If I’ve made your surprise worse, I really do apologize!!

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

        KarenM6,
        Thank you for taking the time to give a detailed explanation of your out-of-pocket expenses.
        My comment was more of an expletive than a question. I am astounded that in our day and age, that people have to go to so much expense to stay alive. It makes me wonder how many people are not making it, and just dying without anyone noticing. What a shame for our great society.

        2
        3 years ago Log in to Reply
      3. KarenM6

        Ah! I see (and apologize for my misunderstanding!!)… and I agree with your expletive!
        I wish there could be an “Insulin Refrigerator” company that could dole out insulin or supplies to those who can’t afford it!!

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

        Interesting that you should say that. I was thinking the same thing today. If we could only send an extra bottle of insulin, or pump supplies to a central depository that could dole it out to those in need. But, that would irritate the insurance companies, probably violate all kinds of FDA rules, and is a bit pie-in-the-sky. But, wouldn’t it be nice if no one had to worry about having the medicine they need to live?

        1
        3 years ago Log in to Reply
      5. KarenM6

        Utterly agree! šŸ˜€

        3 years ago Log in to Reply
    9. Lynn Smith

      $788. That includes my portion for sensors, transmitters, insulin, 2- 90 day supplies of Omnipods, the intro kit for the Omnipod 5 and quarterly order of Metanx for my peripheral neuropathy. Next quarter will be $548. Wow, that’s a lot of money!!!!!

      1
      3 years ago Log in to Reply
    10. Sharon Gerdik

      Damn Donut Hole with Medicare

      3
      3 years ago Log in to Reply
    11. Ms Cris

      I am including OTC supplements, like D3, that aren’t covered, things like Tegaderm and tape, Frio (just bought new ones), Smarties, needles (no longer require a Rx in my state, cheaper out of pocket), etc. I consider these all supplies! (I should probably include specialty foods, like monk fruit sweetener, etc. But I didn’t.)

      3 years ago Log in to Reply
    12. Patricia Kilwein

      Medicare actually covers all of my supplies.

      3 years ago Log in to Reply
    13. Wanacure

      I’m not on the ORIGINAL Medicare. Wish now that I had stayed with that instead of being lured away by a so-called advantage plan. I think I’m in the $501-$750 range and no pump, just using multiple daily injections and Dexcom 6 CGM and 1 lispro vial and one glargine vial each month. I use different syringes for each insulin type and use the syringes till the needle bends or I can’t read the dosage scale. Are you taking an RX for another extra disease you don’t really have? BBC TV reported that doctors who ā€œdiagnoseā€ more disease needing more treatments have been rewarded by their for-profit employers with gifts like champagne!
      Then the companies overbill Medicare to further increase profits. Humana, KP, and another were mentioned by BBC.

      3 years ago Log in to Reply
    14. heidi silvia

      I take a total of 13 Medications not counting test supplies, insulin and ,my pump supplies So it can become very costly. I usually have to pick some up the beginning of the .

      3 years ago Log in to Reply

    How much did you spend out-of-pocket on all of your diabetes medications and supplies from the start of July through the end of September 2022? Cancel reply

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