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  • Activity
    • 3 hours, 52 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, 52 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, 49 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.
    • 6 hours, 5 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.
    • 17 hours, 15 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.
    • 21 hours, 4 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
    • 21 hours, 6 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, 48 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, 48 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, 51 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, 56 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, 56 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, 58 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, 58 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, 59 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.
    • 22 hours, 35 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, 46 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, 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'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, 59 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.
    • 1 day 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, 2 hours 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, 2 hours 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, 2 hours 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, 2 hours 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, 2 hours 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
    Clear All
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    Have you ever participated in a T1D clinical trial? Tell us about it in the comments!

    Home > LC Polls > Have you ever participated in a T1D clinical trial? Tell us about it in the comments!
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    If you have ever been unable to afford your diabetes supplies, or if you hypothetically ever were unable to afford your diabetes supplies, how comfortable would you feel telling your doctor?

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    12 Comments

    1. Bob Durstenfeld

      I participated in the Dexcom/Tandem closed-loop trial to test Control !Q. In 1977 I participated in the early Platinum Glucose Sensor trials. Long before CGM existed or the compute power or miniature radios.

      2 years ago Log in to Reply
    2. Jim Rogers

      After becoming a type one diabetic at the age of 23 in 1983 I joined a Lilly trial of laboratory made insulin versus the beef and pork insulins that were available at the time. After the study I continued using that insulin that is used today.

      2 years ago Log in to Reply
    3. Clare Fishman

      I participated in a clinical trial of a c-peptide replacement hormone. It was thought that c-peptide was an important hormone for nerve cell protection. It turned out not to be the case, but I got a years worth of very comprehensive medical care and got paid for it. It was a double blind study and I did get the active drug.

      2 years ago Log in to Reply
    4. James Cheairs

      Have been in several clinical trials for T1D: – early 2000’s: some sort of rapid acting insulin that never went to market – 2018: glucagon replacement – do not remember the name but think it is the one recently released – 2018 to 2019: Medtronic 670G closed loop – currently enrolled: Insulet Horizon closed loop study

      2 years ago Log in to Reply
    5. Kristine Warmecke

      I’ve been many over the years. Starting the year of my diagnose 1982, I joined the Diabetic Registry that my younger brother had been in since it started; Four days and 3 nights in the hospital every year having the same in-depth testing done. They were excited to have another sibling group. I’ve also done a hypoglycemia unawareness study, a few I can’t remember with my parents involved, one for neuropathy prevention, one for abnormal EKG in a healthy looking heart per ECHO, etc. Anything to help father the prevention of completions and better treatment of T1D.

      2 years ago Log in to Reply
    6. kalmay

      I had a islet cell transplant 10 years ago. I’ve been involved with many research studies since I was diagnosed in 1971 at 15years

      2 years ago Log in to Reply
    7. Kathi Dixo

      Was a volunteer with DCCT (Diabetes Control & Complications Trial) from 1986 until it stopped. Continue with the followup EDIC.

      2 years ago Log in to Reply
    8. Linda Fast

      I received an implantable pump about 30 years ago. It was amazing at the time (I was not on an external pump back then). I went to my endocrinologist monthly to get it refilled. The trial ended due to someone at the plant messing up the trial, so I was told. I did like doing the trial and loved not taking “shots”. It definitely made me open to pumping!

      2 years ago Log in to Reply
    9. Janice B

      I was in the clinical trial for inhaled insulin (in the placebo group so I just remained on my regular humalog and Lememir) the trial lasted several years. I had to have 3 lung function tests every couple of months. Then I was in a phase 1 and phase 2 trial for an SG2 inhibitor.

      2 years ago Log in to Reply
    10. Leona Hanson

      Don’t live close enough to town or a big city to do trials or I would esspiacly with me being a brittle diabetic

      2 years ago Log in to Reply
    11. Molly Jones

      I ask my endo, see what T1D invites me to, or look up clinical trials for interesting things I would be eligible for. I have downloaded data, given blood, filled out questions and not had enough of the peptides for one of the trials I wanted the most. The more people who get involved the faster a disease can be fully understood.

      2 years ago Log in to Reply
    12. Aimee Minton

      One Study on an insulin patch. Awful because I had to get a blood draw from a venous line every hour. Another study about a pill that was never approved for type 1 patients. It worked great for me!

      2 years ago Log in to Reply

    Have you ever participated in a T1D clinical trial? Tell us about it in the comments! Cancel reply

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