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    • 14 hours, 45 minutes ago
      Jeanne McMillan-Olson likes your comment at
      If you have been hospitalized for a reason unrelated to T1D and you were alert during your hospital stay, were you allowed to manage your own insulin dosage? (If you have been hospitalized for reasons unrelated to T1D multiple times, please select the option that describes your most recent hospital stay.)
      The hospital made me disengage my pump and promised to monitor my BG. After 10 hours with an incorrect basal my BG was high and going up. No nurse or doctor was available to administer insulin. I finally reinstalled my pump and forced the hospital to acknowledge that they could not monitor my BG. After appealing to the hospital Board, after my stay, they started using CGM's in all the wards for diabetic patients.
    • 14 hours, 46 minutes ago
      Jeanne McMillan-Olson likes your comment at
      If you have been hospitalized for a reason unrelated to T1D and you were alert during your hospital stay, were you allowed to manage your own insulin dosage? (If you have been hospitalized for reasons unrelated to T1D multiple times, please select the option that describes your most recent hospital stay.)
      During my hospitalizations for cardiac issues, my endocrinologist (who does not do hospitals) told the attending endo that I was capable of managing the diabetes. I was allowed to mange pump and CGM without any problems. For one stay, I had a pump-using T1D nurse. This was the premier cardiac hospital in the western part of my state, so their handing of diabetes may be more advanced. There are two rules for handing the type 1 diabetic in a hospital setting. 1) Never separate the Type 1 diabetic from his or her insulin. 2) Let the expert in the room handle the diabetes. And bring your own supplies, because the hospital will not have pump supplies, CGM replacements, or your insulin.
    • 15 hours, 37 minutes ago
      Jan Masty likes your comment at
      Have you (or your loved one with T1D) been diagnosed with retinopathy?
      No retinopathy... But AMD both eyes last 2 years...No treatment available... Unable to wright... bareley able to read only large type... use the talking guy hideing in my computer to read for me... Almost 91 years OLD.... 70 years T1D...
    • 16 hours, 5 minutes ago
      mojoseje likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      I didn't have a stopwatch out, but it was about 12 to 15 minutes. There was a lot to go over (new devices, etc.). I probably got everything I needed, but, for some reason, I always feel rushed at this office.
    • 16 hours, 17 minutes ago
      KarenM6 likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      It was so long ago, I don't remember...
    • 17 hours, 10 minutes ago
      Janis Senungetuk likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      It was over 20 minutes but since my Endo has me so well Regulated (A1c 5.4 - 5.6) even Medicare is allowing a Visit every 4 Months. Dex 6 and Tandem CIQ is my Cure!
    • 17 hours, 17 minutes ago
      Judy Hampton likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      My A1C is normally in the 5 to 6 range also, but I am lucky to have an Endo who answers any questions I may have and discourse on new technologies. He also checks my feet and eyes. He spends up to 40 minutes with me. I have been T1D for 59 years and have been through a pregnancy (hellish) also. I still have many questions about this disease and it’s effects on the rest of my body as I am very active.
    • 17 hours, 39 minutes ago
      Patricia Dalrymple likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      I believe if you have good control and your A1C's prove it, maybe 10 to 20 minutes is enough. My A1C's are in the high 5's / low 6's so my session is usually complete within minutes tops, but there are probably other patients that should require a little more time from their endo to get them on a 'well managed' A1C path.
    • 17 hours, 41 minutes ago
      cynthia jaworski likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      I believe if you have good control and your A1C's prove it, maybe 10 to 20 minutes is enough. My A1C's are in the high 5's / low 6's so my session is usually complete within minutes tops, but there are probably other patients that should require a little more time from their endo to get them on a 'well managed' A1C path.
    • 17 hours, 48 minutes ago
      Anneyun likes your comment at
      If you are an adult with T1D, how much has type 1 diabetes affected your thought-process and decision to have/not have children?
      I was diagnosed at age 12 and I don’t remember anyone talking to me about having or not having children. I married at 23, had an unplanned pregnancy that began when I was 24. I was not seeing an endocrinologist at the time (in 1979), but my OB doctor sent me to one. Both of the doctors made comments to me about maybe ending the pregnancy, but my answer was a definite NO!!! It was a hard pregnancy without the better insulin and technology that is available today. I went into labor approximately 6 weeks before my estimated due date. Since a Caesarian had been planned, no one had explained anything to me about going through labor, so that took longer and was harder on me than it should have been. Anyway I delivered a 7 pound, 11 ounce boy. He had jaundice and a slight heart murmur at first , but that cleared up after a short stay in the hospital. My son is 42 now and bloodwork has indicated he will not become a T1D. Same with his 2 children. That was my only pregnancy. I am now 67.
    • 19 hours, 12 minutes ago
      Joan Fray likes your comment at
      During your most recent appointment, about how much time did you spend with your main T1D health care provider?
      It was so long ago, I don't remember...
    • 1 day, 10 hours ago
      TS likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      InsulinPumpers.com does a great job of distributing supplies to those in need.
    • 1 day, 14 hours ago
      jo likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I have decided to give them to my endo's office. They have a nice supply closet of donations, that they give to people in trouble. Since i have had to dip in that closet once, I now know how important that can be.
    • 1 day, 14 hours ago
      jo likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      InsulinPumpers.com does a great job of distributing supplies to those in need.
    • 1 day, 15 hours ago
      KarenM6 likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I tried to donate them to my healthcare system but was told they were not allowed to take them. I tried a couple of other places- same story so I now will have to put them in the garbage
    • 1 day, 15 hours ago
      KarenM6 likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I'm still looking for someone to give them to.
    • 1 day, 15 hours ago
      KarenM6 likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I would love to learn of places to give/donate supplies!
    • 1 day, 15 hours ago
      KarenM6 likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      My other was gave them to the Endocrinologist office to give to people who needed them
    • 1 day, 16 hours ago
      Trina Blake likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I have decided to give them to my endo's office. They have a nice supply closet of donations, that they give to people in trouble. Since i have had to dip in that closet once, I now know how important that can be.
    • 1 day, 17 hours ago
      Amanda Barras likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I have decided to give them to my endo's office. They have a nice supply closet of donations, that they give to people in trouble. Since i have had to dip in that closet once, I now know how important that can be.
    • 1 day, 17 hours ago
      Richard Wiener likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I would love to learn of places to give/donate supplies!
    • 1 day, 18 hours ago
      Janis Senungetuk likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I gave insulin to a friend for her cat who used the same as I did.( she also checked with her vet).
    • 1 day, 18 hours ago
      pru barry likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I gave insulin to a friend for her cat who used the same as I did.( she also checked with her vet).
    • 1 day, 18 hours ago
      pru barry likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      I have given most to my doctor to give to someone in need. Some I gave to my chiropractor for his son.
    • 1 day, 18 hours ago
      Sue Martin likes your comment at
      If you have ever had extra supplies from a device you no longer use, what did you do with those extra supplies? Please select all that apply.
      My unused diabetes supplies like meters, that I was given but don’t use, just sit in a drawer. I wish there was someplace to send them. Any ideas, folks?
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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 Marketing Manager 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
      2 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
      2 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.

      2 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.

      2 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
      2 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
      2 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
      2 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
        2 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
      2 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
      2 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
      2 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
      2 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?

        2 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.

      2 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
      2 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.

        2 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
      2 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
        2 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
      2 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
      2 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!

        2 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
      2 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.

      2 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
      2 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
        2 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
      2 months ago Log in to Reply
    21. Carol Meares

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

      2
      2 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.

      2 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.

      2 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.

      1 month 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.

      3 weeks 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 days 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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