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    • 14 hours, 21 minutes ago
      ConnieT1D62 likes your comment at
      When did you bolus for your most recent meal? If you bolused multiple times for your last meal, please select all that apply.
      I usually bolus for breakfast right at the time I start eating. But I prefer to bolus 15 minutes before. Better results. But I always forget.
    • 16 hours, 17 minutes ago
      KarenM6 likes your comment at
      When did you bolus for your most recent meal? If you bolused multiple times for your last meal, please select all that apply.
      I said 15-30, but it may have been more than 30. I wasn't watching the clock this morning. I just checked my pump bolus history. It was about 30 minutes. I need to bolus early in the morning because my blood sugars shoot up high after breakfast. Bolusing sooner seems to help keep my BG from going off the charts. But, if I bolus too soon, I have serious low BG's. It's all an art ... and luck.
    • 16 hours, 19 minutes ago
      KarenM6 likes your comment at
      When did you bolus for your most recent meal? If you bolused multiple times for your last meal, please select all that apply.
      I am able to pr bolus for Breakfast and dinner as I am at home. I never know when I am going to eat at work so bolus is at start of meal.
    • 19 hours, 11 minutes ago
      Mick Martin likes your comment at
      When did you bolus for your most recent meal? If you bolused multiple times for your last meal, please select all that apply.
      Question is misleading until type of insulin is understood. I said 15 because I use Fiasp insulin.
    • 19 hours, 27 minutes ago
      Kris Sykes-David likes your comment at
      When did you bolus for your most recent meal? If you bolused multiple times for your last meal, please select all that apply.
      I said 15-30, but it may have been more than 30. I wasn't watching the clock this morning. I just checked my pump bolus history. It was about 30 minutes. I need to bolus early in the morning because my blood sugars shoot up high after breakfast. Bolusing sooner seems to help keep my BG from going off the charts. But, if I bolus too soon, I have serious low BG's. It's all an art ... and luck.
    • 20 hours, 24 minutes ago
      Ernie Richmann likes your comment at
      When did you bolus for your most recent meal? If you bolused multiple times for your last meal, please select all that apply.
      I said 15-30, but it may have been more than 30. I wasn't watching the clock this morning. I just checked my pump bolus history. It was about 30 minutes. I need to bolus early in the morning because my blood sugars shoot up high after breakfast. Bolusing sooner seems to help keep my BG from going off the charts. But, if I bolus too soon, I have serious low BG's. It's all an art ... and luck.
    • 20 hours, 45 minutes ago
      Robin Melen likes your comment at
      When did you bolus for your most recent meal? If you bolused multiple times for your last meal, please select all that apply.
      My most recent meal was breakfast and, during the work week, I am far better at bolusing ahead of time. The rest of my meals in the day though end up receiving the bolus as I start eating or part at the start and more later on (depending on what I am eating and whether I know how much I'll eat.)
    • 1 day, 15 hours ago
      KarenM6 likes your comment at
      Of the people in your life, who (if anyone) makes you feel judged or criticized for your T1D management (for example, what foods you eat, where or when you check your blood glucose, etc.)? Select all that apply to you.
      Insulin, meters, diabetic tech are not magic wands. Its usage does not guarantee only "positive" results. Negative events can and do occur, period. Non -D- typically (incorrectly) equate negative events as being total user failure, severe user errors. As diabetics we get blamed, despite having made zero mistakes on our part. We make seriously educated best guesses, despite that truth, we can and do fail anyway sometimes! Outsiders falsely need to believe inulin, our tech are complete-total cures, rather than tiny bandages at best. When confronted for using (sic. my) "drugs" in public, no matter how invisibly done... it is their self righteousness , poor assessment which is the issue. I gladly squash such insects...
    • 1 day, 20 hours ago
      Lawrence S. likes your comment at
      If you use an insulin pump that comes with a clip, how often do you have your pump clip attached to your pump?
      The more important question is 'how well does the clip work'. For me, the Medtronic clip worked very well, but the Tandem clip is quite ineffective and the pump falls off my belt during things like yard work or other bending movements.
    • 1 day, 20 hours ago
      Lawrence S. likes your comment at
      If you use an insulin pump that comes with a clip, how often do you have your pump clip attached to your pump?
      I answered never. I always use a clip -- I wear my t:slim x2 on my belt -- but not the Tandem clip. I use the black t:Holster Rotating Belt Clip. Very pleased.
    • 1 day, 20 hours ago
      Lawrence S. likes your comment at
      If you use an insulin pump that comes with a clip, how often do you have your pump clip attached to your pump?
      I am rough on pumps and use a Tandem X2 but dont use the Tandem clip/holster. I use a neoprene case and a pouch with a metal clip. Thenmetal clip is uncomfortable while I sleep. Looking for a different solution for wearing my pump at night.
    • 2 days, 16 hours ago
      Wanacure likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      I answered that nobody wants to be screened, but I was answering based on my immediate family. I did let my deceased type-1 diabetic cousin's 35 year old son know he can be tested for his likelihood of becoming type-1 diabetic. He said he may be tested as he was always curious if he had a chance.
    • 2 days, 17 hours ago
      Wanacure likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      I have T1, and when my oldest grandson got T1, the other 3 grandkids got screened. The grandson who's the brother of the one with T1, showed a strong possibility of being a future T1 diabetic. It sadly came true about a year later.
    • 2 days, 17 hours ago
      Wanacure likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      I have LADA, and the idea of screening has not come up, either by me or my adult children. I guess I need to present the opportunity to them so they can make the decision.
    • 2 days, 17 hours ago
      Wanacure likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      Hi Kristen, thanks so much for your feedback. We do plan to continue questions and education on T1D screening. The constantly evolving clinical trials and FDA-approved therapies that offer the potential to intervene, delay —— and hopefully some day prevent —— T1D are only effective if children are being screened for the earliest stages of T1D. Without screening, we cannot delay or prevent T1D. We do offer "No, my family members have no been screened" as an option. We appreciate your passion as a person affected by T1D and hope you enjoy our other daily questions. All the best, The T1D Exchange team
    • 2 days, 20 hours ago
      Samantha Walsh likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      I was born in 1939 and had many childhood illnesses. Three different kinds of measles and tonsils removed before I was 5 years old, then mumps and chickenpox when I was 5. While recovering from the mumps and chickenpox, I began showing the symptoms of very high blood sugar. Three doctors examined me and they were not able to make a diagnosis. I had lost much weight, and I had stopped eating. I did not have an appetite. It was almost impossible for me to walk. A fourth doctor had my blood tested and he made the diagnosis. While receiving pork insulin I finally began to recover a few days after my sixth birthday. I did not have ant relatives with diabetes. I think the childhood diseases caused internal damage and that was the cause of my diabetes. At the present time there are still no type one diabetics among my relatives. I do not believe it is necessary for my children and grandchildren to be screened for T1D autoantibodies.
    • 3 days, 15 hours ago
      KarenM6 likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      Hi Kristen, thanks so much for your feedback. We do plan to continue questions and education on T1D screening. The constantly evolving clinical trials and FDA-approved therapies that offer the potential to intervene, delay —— and hopefully some day prevent —— T1D are only effective if children are being screened for the earliest stages of T1D. Without screening, we cannot delay or prevent T1D. We do offer "No, my family members have no been screened" as an option. We appreciate your passion as a person affected by T1D and hope you enjoy our other daily questions. All the best, The T1D Exchange team
    • 3 days, 17 hours ago
      Katie Bennett likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      Hi Kristen, thanks so much for your feedback. We do plan to continue questions and education on T1D screening. The constantly evolving clinical trials and FDA-approved therapies that offer the potential to intervene, delay —— and hopefully some day prevent —— T1D are only effective if children are being screened for the earliest stages of T1D. Without screening, we cannot delay or prevent T1D. We do offer "No, my family members have no been screened" as an option. We appreciate your passion as a person affected by T1D and hope you enjoy our other daily questions. All the best, The T1D Exchange team
    • 3 days, 18 hours ago
      Kate Kuhn likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      Hi Kristen, thanks so much for your feedback. We do plan to continue questions and education on T1D screening. The constantly evolving clinical trials and FDA-approved therapies that offer the potential to intervene, delay —— and hopefully some day prevent —— T1D are only effective if children are being screened for the earliest stages of T1D. Without screening, we cannot delay or prevent T1D. We do offer "No, my family members have no been screened" as an option. We appreciate your passion as a person affected by T1D and hope you enjoy our other daily questions. All the best, The T1D Exchange team
    • 3 days, 18 hours ago
      Karen DeVeaux likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      I was born in 1939 and had many childhood illnesses. Three different kinds of measles and tonsils removed before I was 5 years old, then mumps and chickenpox when I was 5. While recovering from the mumps and chickenpox, I began showing the symptoms of very high blood sugar. Three doctors examined me and they were not able to make a diagnosis. I had lost much weight, and I had stopped eating. I did not have an appetite. It was almost impossible for me to walk. A fourth doctor had my blood tested and he made the diagnosis. While receiving pork insulin I finally began to recover a few days after my sixth birthday. I did not have ant relatives with diabetes. I think the childhood diseases caused internal damage and that was the cause of my diabetes. At the present time there are still no type one diabetics among my relatives. I do not believe it is necessary for my children and grandchildren to be screened for T1D autoantibodies.
    • 3 days, 19 hours ago
      Kelly-Dayne likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      Hi Kristen, thanks so much for your feedback. We do plan to continue questions and education on T1D screening. The constantly evolving clinical trials and FDA-approved therapies that offer the potential to intervene, delay —— and hopefully some day prevent —— T1D are only effective if children are being screened for the earliest stages of T1D. Without screening, we cannot delay or prevent T1D. We do offer "No, my family members have no been screened" as an option. We appreciate your passion as a person affected by T1D and hope you enjoy our other daily questions. All the best, The T1D Exchange team
    • 3 days, 20 hours ago
      William Bennett likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      Hi Kristen, thanks so much for your feedback. We do plan to continue questions and education on T1D screening. The constantly evolving clinical trials and FDA-approved therapies that offer the potential to intervene, delay —— and hopefully some day prevent —— T1D are only effective if children are being screened for the earliest stages of T1D. Without screening, we cannot delay or prevent T1D. We do offer "No, my family members have no been screened" as an option. We appreciate your passion as a person affected by T1D and hope you enjoy our other daily questions. All the best, The T1D Exchange team
    • 3 days, 20 hours ago
      Jneticdiabetic likes your comment at
      Have you ever participated in a charity fundraising event that benefitted a diabetes organization (i.e., a walk, marathon, gala, etc.)?
      I have led a team for the JDRF OneWalk annually since the late 1990's. We have been able to raise a lot of funds for JDRF...and I have enjoyed doing it. Good cause!
    • 3 days, 20 hours ago
      Lawrence S. likes your comment at
      If you or someone in your family has T1D, have other members of your family been screened for T1D autoantibodies? If not, do you think your family would be willing to be screened for T1D autoantibodies?
      my siblings & parents are older (like me) and they've never expressed any interest in getting tested. my nieces and nephews have never said anything either
    • 4 days, 8 hours ago
      Karen Newe likes your comment at
      Have you ever participated in a charity fundraising event that benefitted a diabetes organization (i.e., a walk, marathon, gala, etc.)?
      I participated in several ADA walks not long after being Dx with T1D. As Ahh Life points out large $ are rased, but where do they go? I stopped supporting ADA for that reason. I think JDF is much more open on where the funding goes.
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    Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?

    Home > LC Polls > Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.?
    Previous

    If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?

    Next

    When you experience an illness that makes your blood glucose levels more difficult to manage (whether because you are unable to eat, the stress of being sick, or any other reason), what resources do you refer to for help managing your blood glucose levels while sick? Please select all that apply to you.

    Sarah Howard

    Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community 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 Manager of Marketing at T1D Exchange. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

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    32 Comments

    1. ChrisW

      Eight times a year I have to spend more than eight hours to fix errors on the part of my mail order pharmacy and DME supplier. My endo doesn’t keep track of when prescriptions expire or need refills so add another couple hours a year building a to-do list for the doc. I’m ready to start billing for my time.

      5
      8 months ago Log in to Reply
    2. Marty

      I have a good system at the moment, but I spent hours/days setting it up a couple of years ago.

      2
      8 months ago Log in to Reply
    3. Jeff Marvel

      I picked over 8 hours, but hopefully that’s because my diagnosis was so recent (end of 2021) so all through 2022 I had lots to learn. Coverage for insulin has never been a problem, but CGMs sent me through a loop because they were only a DME benefit, not a pharmacy benefit. It took 5 different phone calls to insurance reps for someone to finally tell me that outright, then another call and forms filled out to get reimbursed for the money I’d spent at the pharmacy. Then when I realized I was spending more anyway by getting them through DME, my policy changed for the new year and they’re a pharm benefit now, so all that runaround feels arbitrary now.

      Nevertheless, non-diabetic people assure me that this is a great insurance policy, so I guess I’m married to my job now. Even though it was only meant to be a part-time gig to pay grad-school tuition.

      8 months ago Log in to Reply
    4. kathy scott

      I switched to Medicare as of Jan 1, 2023, so extensive hours have been and still are devoted to this adjustment.

      8 months ago Log in to Reply
    5. lis be

      One of the most unnecessary and frustrating parts of being a type 1 diabetic is all the stress and time involved with insurance companies, pharmacies, durable medical equipment distributers and their need to always contact physicians.

      5
      8 months ago Log in to Reply
    6. kathy scott

      Switching to Medicare has created (seemingly) endless hours and day making this transition with all things diabetes related. We’re still in the midst of making this ‘delightful’ change.
      This week we learned that Medicare covers Either CGM stuff OR glucose test strips. Thank goodness that God is sovereign over all these details. He helps me walk through these challenges without despair.

      3
      8 months ago Log in to Reply
    7. Mike S

      Seriously depends on when you ask. The past 3 months have only been an hour or two, but if you’d asked this same question last September it would’ve been over 8 as I dealt with the annual “Yes I need a Dexcom and Omnipod again” red tape with my insurance/providers/doctor’s office. I am counting the time on hold as well, but still – pretty ridiculous that insurance thinks Type 1 is going to magically go away just because it’s been a year. I wish!

      2
      8 months ago Log in to Reply
      1. Bill Williams

        I expect that we’ve all had that feeling about how stupid payers can be when it comes to T1D.

        1
        8 months ago Log in to Reply
    8. Kristine Warmecke

      I said 5 to 6 hours, with maybe 20min. of that time ordering G6 sensors and tSlim supplies. The remaining time was finding Novolog I could afford.

      1
      8 months ago Log in to Reply
    9. Kathy Hanavan

      The last 3 months have been filled with frustrating phone calls now that I switched back to traditional Medicare from a Medicare Advantage plan. I have been fighting to get strips authorized in addition to CGM- they did not authorize them because I had no proof that I had a meter!! Crazy making! I had to write an appeal letter in order to get them, but finally got it worked out. I also had some pump replacement issues, trouble getting insulin, etc.

      3
      8 months ago Log in to Reply
    10. Don (Lucky) Copps

      only once did I need to be advised. Rec’vd a steriod shot for frozen shoulder and had to set my pump to 400% and supplement with direct injections for two weeks. As it slowly left my body I had to slowly reduce the insulin. Complete PITA!! Orthepedics know nothing about insulin/diabetic complications with steriods. Excuse my spelling in a hurry

      1
      8 months ago Log in to Reply
    11. Lori Lehnen

      Normally, no time spent but I changed insulins so I wanted to verify everything with my insurance company before asking my endocrinologist to write a new script.

      1
      8 months ago Log in to Reply
      1. beth nelson

        How do you like the new insulin? Would you mind sharing what it is and why you switched?

        8 months ago Log in to Reply
    12. Sue Martin

      It was minimal time to coordinate refills and changes to a medication that the insurance requested.

      8 months ago Log in to Reply
    13. Amy Jo

      Significantly less time since I switched from Byram to ADS. It has made a world of difference and saved so many headaches!!

      1
      8 months ago Log in to Reply
      1. beth nelson

        Amy Jo, I left Byram, too! Even had to file a complaint with BBB which sped up the resolution process, at least.

        8 months ago Log in to Reply
    14. Andrew Aronoff

      I answered “No time,” but I live in France, where we have a single provider. I receive a prescription from my doctor and go to the pharmacy monthly to have it filled. (Pump peripherals are provided by a separate supplier.) “Appeals” do not exist here since the doctor will only prescribe medicines that are reimbursed. And no, I have never needed a treatment that wasn’t covered.

      6
      8 months ago Log in to Reply
      1. beth nelson

        Most of Europe has the right idea! Is it a good health system for you overall? The US may be too large to implement a national system, but that doesn’t hold states back (as long as there is federal money to help).

        1
        8 months ago Log in to Reply
    15. pru barry

      Much too much time! Part of it, I know, is my own fault, for not keeping anxiety at bay when I have to sort out which plan will work best, annually. But it is something I dread, every single year. When I call to get some help understanding, the people are almost always very nice, but I have had times when the information was incorrect or not explained clearly. I usually commiserate with the person on the phone for having such an annoying system, and agreement seems to rule the day. But I never chose to make sorting out insurance management a career!

      2
      8 months ago Log in to Reply
    16. William Bennett

      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.

      4
      8 months ago Log in to Reply
      1. beth nelson

        Oh man! You’re so right, William! Read my comment above so you can be prepared for next January!

        8 months ago Log in to Reply
    17. Kathryn Keller

      Just spent an hour and a half on the phone with insurance the other day trying to switch to Dash pods and nothing was accomplished….

      2
      8 months ago Log in to Reply
    18. Drina Nicole Jewell

      Before my last tandem order I’d say zero time, it’s all auto refill. But the lady processed my insurance wrong and it was a nightmare. Clerical error on her part and I had to talk to someone completely different to get it fixed and the right insurance run.

      8 months ago Log in to Reply
    19. beth nelson

      The beginning of the year is always a bit iffy when you’re on Medicare. Even though I’ve already paid my annual deductible, my pharmacy can’t see that, so I must wait until it shows up on my Medicare account before I order new insulin. I always try to have plenty of insulin on hand at the end of December so it’s not an issue. The organization I get my pump equipment from has a lot they must do because of Medicare, as well, and that can get time consuming. All-in-all, I’m lucky to have the time, energy and patience to deal with it, and I know up front these time-consuming moments are to be expected. If I wasn’t retired, it’d be more of an issue.

      2
      8 months ago Log in to Reply
      1. beth nelson

        PUMP USERS: Just in case nobody has told you, if you use a pump, Insulin is considered durable medical equipment, which can save a lot of money, even with the new price cap

        1
        8 months ago Log in to Reply
    20. TEH

      I selected 6 hours.

      So far, I have spent 6 weeks trying to get a new pump.

      I decided to look for a new pump in mid-December as my 770G warranty expired on January 3. I wanted to go hoseless with the Omnipod and the Dexcom 6.

      I contacted Dexcom and they sent me to the medical distribution company ASPN, and they could do the Omnipod but only with pharmacy part D with the Dexcom 6 sensor on DME

      My part D pharmacy plan had Omnipod as tier 6. $155.56 co pay and $150/month.

      The omnypod is not available as DME.

      I called INSULET the mfgr of omnipod. They told me they only supply via pharmacy plan to get more T2d’s to sign up.

      Verses 100% DME coverage, part D coverage that was a non-starter.

      I contacted another supply company CCSmed. They could do both Dexcom 6 and tslim x2.

      Ineeded a Endo visit to get the notes and Rx. I had my Endo visit on Jan 20.

      Still waiting for CVSmed. Been waiting for 5 weeks now.

      Just called CCSmed and they got the endo notes and Rx but Medicare wanted to know who paid for my 770G 4 years ago. Fortunately, that was private/company.

      My new pump should now ship tomorrow. Finally.

      3
      8 months ago Log in to Reply
    21. Carol Meares

      Most of the 3-4 hours is way ting on a phone

      2
      8 months ago Log in to Reply
    22. Wanacure

      Medicare, Byram, & my diabetes team seen to work smoothly together, but I’m not on a pump, just Dexcom and MDI of glargine and lispro and One Touch meter.

      8 months ago Log in to Reply
    23. mbulzomi@optonline.net

      Never had a problem. However, my Endo’s office forgot to use the Medicare Part “B” numeric code once and I had to wait a day. WOW, no big deal.

      8 months ago Log in to Reply
    24. T1D4LongTime

      I’ve had very few issues with DME or insulin supplies. About once a year, I have an issue where the mail order pharmacy says they sent a fax and the doctor says they never received it, but it’s infrequent.

      8 months ago Log in to Reply
    25. Amy Schneider

      I’m on Medicare. I spend hours on the phone getting prescriptions covered and delivered on time.

      7 months ago Log in to Reply
    26. Lisa McBride

      I have figured out what I need to do to get my diabetes supplies (insulin, test strips, and pump supplies) with the least hassle and in a way that makes sense. So this quarter, I’ve spent only an hour or so AT MOST dealing with issues related to my supplies. In the past, I’ve spent multiple hours (more than 2) when things have gone awry. It’s on me to determine when to reorder if I am not getting supplies on a refillable schedule. I keep a close watch on my pumps, my strips, and my insulin to prevent problems. I now can and have to get my 3 month supply of insulin from my local pharmacy, under my insurance plan, and that allows me to NOT get a large styrofoam container that CAN NOT be recycled. I refuse as many containers as possible that can not be recycled.

      7 months ago Log in to Reply

    Over the past 3 months, how much time would you estimate you have spent working through T1D prescription-related issues with pharmacies, insurance companies, durable medical equipment distributors, T1D device companies, health care providers, etc.? Cancel reply

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