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    • 3 hours, 16 minutes ago
      Greg Felton likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      Before the onslaught of Type 2 Diabetes, I, as a T1D, could get an appointment almost anytime I needed one. Now, I cannot get an appointment within 3 months, which is the time within I must see rhe doctor for Medicare benefits. My doctor cancelled 2 (half ) of my sppointments last year. Caused ma a lot of problems. I live in Florida, a place where modern medicine does not seem to have reached yet.
    • 3 hours, 16 minutes ago
      Greg Felton likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      I routinely see my Endo every three months. At the end of my appointment I schedule the next quarterly meeting date. But if I ever have to reschedule it, then it takes anywhere from two to four weeks to find a time that works for us.
    • 5 hours, 13 minutes ago
      Mike S likes your comment at
      If you were to request the next available appointment with your T1D healthcare provider, when do you estimate the next available appointment would be?
      It all depends on the urgency of my needs. I’ve gotten in the next day before, but those days may be gone! It also depends on who I see. But these days, even the PA is often booked. Of course, cancellations happen, so that can be a factor as well.
    • 5 hours, 29 minutes ago
      Jeff Marvel likes your comment at
      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.?
      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.
    • 16 hours, 39 minutes ago
      Gerald Oefelein likes your comment at
      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.?
      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.
    • 20 hours, 27 minutes ago
      Wanacure likes your comment at
      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.?
      Most of the 3-4 hours is way ting on a phone
    • 20 hours, 30 minutes ago
      Wanacure likes your comment at
      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.?
      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.
    • 21 hours, 12 minutes ago
      Wanacure likes your comment at
      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.
      The resources I use in managing my glucose levels once sick is my own personal experience after living with t1d for 46 years
    • 21 hours, 12 minutes ago
      August Rossano likes your comment at
      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.?
      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 ā€˜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.
    • 21 hours, 15 minutes ago
      August Rossano likes your comment at
      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.?
      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.
    • 21 hours, 19 minutes ago
      August Rossano likes your comment at
      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.?
      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.
    • 21 hours, 20 minutes ago
      August Rossano likes your comment at
      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.?
      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!
    • 21 hours, 22 minutes ago
      August Rossano likes your comment at
      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.?
      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.
    • 21 hours, 22 minutes ago
      August Rossano likes your comment at
      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.?
      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.
    • 21 hours, 23 minutes ago
      August Rossano likes your comment at
      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.?
      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.
    • 21 hours, 58 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      I’m a reasonably satisfied MDI user with Lantus and Fiasp. I’ve looked into getting a pump but honestly, until I find one that does everything I want, I’ll probably hold off. My wish list for a pump: 1) no tubes 2) works well with Fiasp 3) controls that allow me to stay at my target of 70-90 mg/dl all night long.
    • 22 hours, 9 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      MDI for the past 60 years and do not see any alternative that I would prefer. The needles for my pens are so thin and sharp that they are painless (a far cry from the lancets I once used). chiefly, I am glad not to have to deal with setting up a pump and. Although I love my libre, I am not good candidate for having devices affixed to me. If my insulin delivery got interrupted they way i have interrupted my cgm service, I would have been in trouble. Furthermore, I have a track record of having both mechanicall and electronic things malfunction. (Seriously, I sometimes act as a beta-tester for technology folks. Maybe I push to many buttons?)
    • 22 hours, 21 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      I've had Tandem x2 and Dexcom since September. Previously on Medtronic for around 15 years. Grew to HATE the sensors and switched before the warranty on my last Medtronic was up. So far, I absolutely LOVE the Tandem and the Dexcom. I'm disappointed, however, in the amount of waste and plastic that this pair creates. Of course there will always be plastic waste from any pumps/sensors, but the amount of non-reusable stuff for insertions is ghastly.
    • 22 hours, 22 minutes ago
      Wanacure likes your comment at
      On a scale of 1-5, how satisfied are you with your current insulin delivery method (pump, pens, syringes, inhaler, etc.)? 5 = the most satisfied, 1 = the least satisfied
      Have your doctor prescribe the syringes with .5 unit increments instead of the 1 unit syringes. Not quite a .1 unit which you are hoping for, but .5 is better than 1 unit increments.
    • 23 hours, 38 minutes ago
      Ahh Life likes your comment at
      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.?
      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.
    • 1 day, 1 hour ago
      ConnieT1D62 likes your comment at
      In your own words, how would you describe the feeling of a severe low?
      Nothing short of terrifying. I often go into seizures, having no idea where I am, who anybody, or even if I’m alive or dead. I’ll feel like I’m falling or hurtling toward something. At home I feel like my house is tilting. Im leaving a lot out but these are some of the scariest things.
    • 1 day, 1 hour ago
      Modee likes your comment at
      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.?
      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 day, 1 hour ago
      Modee likes your comment at
      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.?
      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.
    • 1 day, 1 hour ago
      Modee likes your comment at
      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.?
      I said 8+ and the reason, as for so many others, can be summed up in a phrase: transitioning to Medicare.
    • 1 day, 1 hour ago
      Modee likes your comment at
      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.?
      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
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    Several companies are investigating islet cell replacement therapies for people with T1D, some of which would require patients to be on immunosuppression therapies. Out of the following options, which of these outcomes would be the most meaningful and desirable for you?

    Home > LC Polls > Several companies are investigating islet cell replacement therapies for people with T1D, some of which would require patients to be on immunosuppression therapies. Out of the following options, which of these outcomes would be the most meaningful and desirable for you?
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    37 Comments

    1. PamK

      I chose “not having to plan insulin dosing,” because I have a hard time getting the timing right. I either go low before my meal is ready, or I go high after eating. It just never seems to be right other than on rare occasions.
      I would also have liked to answer “>90% time in range or HbA1C <6%," as this is also very important to me. Unfortunately, I could only choose one answer and not having to plan insulin dosing seemed to me to be a solution to both.

      2
      1 year ago Log in to Reply
    2. Jordan Mooty

      I would choose a greatly improved A1c and time-in-range, but I’m also not willing to do immunosuppression therapy unless I had absolutely no other choice.

      3
      1 year ago Log in to Reply
    3. Patricia Dalrymple

      I chose none of these. If I am trading what I do for T1D with immunosuppressive therapies, whatever that entails, I’ll stick with what I know. I have an A1C of 5.7 and I know what I should and shouldn’t do to avoid highs and lows. I don’t like drugs and all if their side effects. I’ll stick with insulin.

      12
      1 year ago Log in to Reply
      1. William Bennett

        Same selection and same reasoning for me. 5.8 A1C, and I’m doing fine with a pump and CGM. None of the listed options sounds attractive enough to go on immunosuppressants for the rest of my life, even if we weren’t living in the age of the COVID pandemic.

        1
        1 year ago Log in to Reply
    4. Lawrence Stearns

      I chose eliminating hypoglycemic events.

      However, I would not participate in a therapy that makes me take immunosuppression therapies. Could you imagine having a suppressed immune response if you catch Covid 19 or the flu? No, thank you.

      1
      1 year ago Log in to Reply
    5. Ahh Life

      Emphasizing ā€œoutcome most desirable for you,ā€ I must state ā€œeliminating severe hypoglycemic events.ā€ The time in range and Hba1c parameters, while all desirable in the long run, are not immediately lethal. The immediacy and certainty of death rather gets my attention.

      1 year ago Log in to Reply
    6. Patricia Kilwein

      What exactly is islet cell replacement therapy? How can a person make a choice when we do not know what that choice is?

      1 year ago Log in to Reply
    7. marmcs@yahoo.com

      Being able to eat without insulin calculation/dosing is a close 2nd to a1c.

      1 year ago Log in to Reply
    8. cynthia jaworski

      What I would most like is freedom from complications. My time in range and other measurements are good, probably because managing my dosages has become 2nd nature to me after 60 years. However, I would not be surprised to find that other components of a functioning pancreas may be important in overall health (C-peptide, amylin?)

      2
      1 year ago Log in to Reply
    9. LizB

      If I still have to take insulin at all I would not opt for any therapy that requires immunosupressants. Taking those brings on their own problems so unless the trade off it freedom from taking any external insulin it’s not worth it.

      3
      1 year ago Log in to Reply
    10. Mig Vascos

      None of the above if it involves using immune suppression drugs. I’m fortunate enough that I can maintain an average of 85% TIR with a Dexcom sensor and a tandem pump. I’d rather put up with a few lows than with the immunosuppressive drugs.

      3
      1 year ago Log in to Reply
    11. Eve Rabbiner

      COVID has shown just how vulnerable you are on immune suppressing therapy.

      1 year ago Log in to Reply
    12. Clearblueskynm

      I would only want the immune suppressant drugs with the islet cell transplant if there was no, and I mean no, diabetes at all. Otherwise, researchers are wasting their time. And since our own auto bodies are continually attacking our islet cells (I assume that also means transplanted cells), immune suppressive treatment should in theory just allow the new islet cells produced by our own bodies to work. Figure out a protected islet cell transplant that will not allow our own bodies to kill it, that’s really where the future treatment will be.

      4
      1 year ago Log in to Reply
    13. Carol Meares

      I need a lot more information to answer this. Plus during a pandemic, which may not end soon, being on immunosuppressant drugs could be hazardous.

      1
      1 year ago Log in to Reply
    14. Henry Renn

      Already have multiple issues with autoimmune system. Would not want to take meds to suppress it.

      2
      1 year ago Log in to Reply
    15. Thomas Cline

      Managing Type I diabetes simply isn’t difficult enough to make me willing to accept living on immunosuppressants. I would think Covid-19 would have made more people share this view.

      1 year ago Log in to Reply
    16. connie ker

      I would check all of the above because they all sound GOOD. However taking immunosuppressant drugs is BAD. How about taking your own islet cells in the therapy?????

      1 year ago Log in to Reply
      1. Sue Herflicker

        I totally agree with you, I like all the above except for taking the immunosuppression drugs. No thank you!

        1 year ago Log in to Reply
      2. Lynn Smith

        Connie, our islet cells have been killed and no longer work, so there aren’t any to use from our own bodies. 😬

        1
        1 year ago Log in to Reply
    17. Mary Dexter

      I wish more were known about LADA, how it differs from T1 and T2, what it means to still produce random amounts of insulin at random times. I would like to not suddenly go low while grocery shopping, or sweeping, or vacuuming. I would like to sleep without having to get up and fix a low or a high that randomly appears unrelated to how much insulin I took, what I ate or did. I would not like if the transplant made things harder to manage.

      1 year ago Log in to Reply
    18. Kim Murphy

      I would not choose any of the options if it meant I had to be on immunosuppressive drugs.

      4
      1 year ago Log in to Reply
    19. GLORIA MILLER

      Any transplant requires (at this time) immunosuppression therapy, as I understand it. I have a friend who had the islet cell transplant several years ago. She was off insulin for a length of time and then needed another transplant. Due to other problems she had to stop the treatment to stop her body from rejecting the transplant and returned to multiple injections per day. I applied to the same program in 2010 but I had antibodies that prevented me from getting the transplant.

      1 year ago Log in to Reply
    20. Janis Senungetuk

      None of the above, thank you. My TIR is already 90% or better with Tandem’s Control IQ. I’m not interested adding immunosuppression drugs to the list of prescriptions I already take.

      1
      1 year ago Log in to Reply
    21. Lynn Smith

      First let me say that I would never ever be interested in a method of controlling my diabetes that required taking immunosuppressant drugs. My A1c is currently 5.8. I’m on a pump and I’m not that concerned about low blood sugar, other than my CHM waking me up at night. But, I absolutely would rather not have to figure out how much insulin to bolus every single time I put something in my mouth to eat. 😬

      1 year ago Log in to Reply
    22. M C

      I’d rather wait for the science that will allow the creation of replacement islet cells from my own cells, and never take immunosuppression therapies. After what we have all just been living through over the past year and a half as a great example, where those who are immunosuppressed were at much greater risk of severe illness, I wouldn’t voluntarily put myself in that position. (I’d love to never have to manage insulin, or my BG levels, for the rest of my life, but I wouldn’t want to live with the additional risk of being immunosuppressed.)

      2
      1 year ago Log in to Reply
    23. Ceolmhor

      I answered A1c < 6, but I agree with all those who said they wouldn't take immunosuppresive drugs to accomplish it.

      1 year ago Log in to Reply
      1. RobbyLee

        Me too. I misread the question! I don’t feel immunosuppression is the answer when technology is presently good, but can become great!

        1 year ago Log in to Reply
    24. Kevin McCue

      Immunosuppression therapy isn’t a plus for if I’m getting islet cell therapy. Feels like your dancing with the devil for a few benefits without getting meaningful relief

      1
      1 year ago Log in to Reply
      1. sweetcharlie

        I agree with Kevin !! I have lived with T1D for 68 years since age 21 years and no really problems, so why risk other troubles !!!

        1 year ago Log in to Reply
    25. Molly Jones

      I chose Eliminating severe hypoglycemic events as I am concerned with my cognitive functions as I age.
      Thinking about it harder, I should have chosen being able to eat my meals without planning dosing because if this were possible I assume all the others would fall into place.
      I have hope for T1D, especially those newly diagnosed, as I watch clinical trials and pubmed!

      1 year ago Log in to Reply
    26. Amanda Barras

      My biggest struggle is food. I take so much insulin it really is hard to get it right and not over do it. As well, slow digesting food makes for unexpected highs later. Best solution is low carb to help manage. But, to not have to worry about omitting carbs all the time would be wonderful.

      1 year ago Log in to Reply
    27. Sahran Holiday

      None of these is worth immunosuppression.

      1 year ago Log in to Reply
      1. Britni

        Agreed. I’m not interested in trading one problem for another.

        1 year ago Log in to Reply
    28. David Smith

      I agree with so many others – becoming immunosuppressed would, in my view, not offset any advantages that could be offered. With CGM and pump therapy, T1D has been very manageable for me, at least.

      1 year ago Log in to Reply
    29. Donna Young

      If reducing insulin to one injection a day with smart insulin, it would also accomplish the other items. The best treatment is glucose responsive insulin since it would greatly reduce/eliminate the effort of constant monitoring and adjusting insulin while preventing lows and highs. While some people are successful with pump/cgm combinations, who wants to have these things hooked to their body for life? Also, these devices are expensive and unreliable and require frequent monitoring/maintenance.

      1 year ago Log in to Reply
    30. Robert Brooks

      I think we would need to see elimination of the side effects of diabetes to endure immunosuppression. Cardiovascular disease, nephrotoxicity, neurotoxicity, retinopathy and blindness would all have to go away.

      1 year ago Log in to Reply
    31. Tb-well

      If it involves immune suppression, it isn’t a solution. I wouldn’t use it. I have seen far too many people I cared about die from minor infections while on immune suppressants.

      1 year ago Log in to Reply

    Several companies are investigating islet cell replacement therapies for people with T1D, some of which would require patients to be on immunosuppression therapies. Out of the following options, which of these outcomes would be the most meaningful and desirable for you? Cancel reply

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