Bill Williams – T1D Exchange

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- 3 months ago
  
  ConnieT1D62 likes your comment at
  If you were diagnosed with T1D before age 26 or if you have a child with T1D who is now an adult, at what age did you or your child become financially responsible for the entire financial cost of diabetes supplies?
  I was diagnosed in 1960, graduated from college in 1973. Back then, we had no glucometers, no CGM, no pumps. It was pee in a cup, fill a syringe with Lente or NPH, trust how you felt to determine what you did with your insulin. And it was affordable. I don’t recall filing insurance claims for anything. I just paid for it, even right out of college.
- 3 months ago
  
  Becky Hertz likes your comment at
  If you were diagnosed with T1D before age 26 or if you have a child with T1D who is now an adult, at what age did you or your child become financially responsible for the entire financial cost of diabetes supplies?
  I was diagnosed in 1960, graduated from college in 1973. Back then, we had no glucometers, no CGM, no pumps. It was pee in a cup, fill a syringe with Lente or NPH, trust how you felt to determine what you did with your insulin. And it was affordable. I don’t recall filing insurance claims for anything. I just paid for it, even right out of college.
- 3 months ago
  
  Lawrence S. likes your comment at
  If you were diagnosed with T1D before age 26 or if you have a child with T1D who is now an adult, at what age did you or your child become financially responsible for the entire financial cost of diabetes supplies?
  I was diagnosed in 1960, graduated from college in 1973. Back then, we had no glucometers, no CGM, no pumps. It was pee in a cup, fill a syringe with Lente or NPH, trust how you felt to determine what you did with your insulin. And it was affordable. I don’t recall filing insurance claims for anything. I just paid for it, even right out of college.
- 4 months ago
  
  beth nelson likes your comment at
  If you have T1D, have you ever dated or married someone who also has T1D?
  I fell in love with an insulin-dependent Type 2 20 years ago. There’s something terribly romantic about taking Lantus together at the end of the day.
- 4 months ago
  
  Greg Felton likes your comment at
  If you have T1D, have you ever dated or married someone who also has T1D?
  I fell in love with an insulin-dependent Type 2 20 years ago. There’s something terribly romantic about taking Lantus together at the end of the day.
- 4 months ago
  
  Steve Rumble likes your comment at
  If you have T1D, have you ever dated or married someone who also has T1D?
  I fell in love with an insulin-dependent Type 2 20 years ago. There’s something terribly romantic about taking Lantus together at the end of the day.
- 4 months, 2 weeks ago
  
  ELYSSE HELLER likes your comment at
  When eating a food that you are not very familiar with, how often do you look up the nutritional information for the food you are about to eat?
  You mean like the cole slaw with 35g of sugars?
- 5 months, 2 weeks ago
  
  Jen Farley likes your comment at
  If you had T1D as a child, at what age did you start to manage your daily insulin doses mostly on your own? If you have a child with T1D, at what age did they start to manage their insulin doses mostly on their own?
  I was diagnosed at age 9 in 1960 and took Lente insulin once a day. Standard, unchanging dose. Urine testing didn’t tell you much of anything useful.
- 5 months, 2 weeks ago
  
  Bill Marston likes your comment at
  If you had T1D as a child, at what age did you start to manage your daily insulin doses mostly on your own? If you have a child with T1D, at what age did they start to manage their insulin doses mostly on their own?
  I was diagnosed at age 9 in 1960 and took Lente insulin once a day. Standard, unchanging dose. Urine testing didn’t tell you much of anything useful.
- 5 months, 2 weeks ago
  
  KarenM6 likes your comment at
  If you had T1D as a child, at what age did you start to manage your daily insulin doses mostly on your own? If you have a child with T1D, at what age did they start to manage their insulin doses mostly on their own?
  I was diagnosed at age 9 in 1960 and took Lente insulin once a day. Standard, unchanging dose. Urine testing didn’t tell you much of anything useful.
- 5 months, 2 weeks ago
  
  ConnieT1D62 likes your comment at
  If you had T1D as a child, at what age did you start to manage your daily insulin doses mostly on your own? If you have a child with T1D, at what age did they start to manage their insulin doses mostly on their own?
  I was diagnosed at age 9 in 1960 and took Lente insulin once a day. Standard, unchanging dose. Urine testing didn’t tell you much of anything useful.
- 6 months ago
  
  Kristine Warmecke likes your comment at
  Have you ever participated in a Patient Assistance Program to reduce the cost of your insulin or other diabetes supplies?
  Not a formal program, but I went to an Endo clinic for a while where the NPs, knowing that I paid cash for my appointments, gave me lots of samples. Saved me a bundle.
- 6 months, 2 weeks ago
  
  Jeff Marvel 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.)
  After getting my insulin pens smuggled in, I was fully in charge. Before that, I had a hospitalist decide that all I needed to bring my BG down from 308 was a large drink of water.
- 6 months, 2 weeks ago
  
  Wanacure likes your comment at
  Recent advancements in insulin pens have led to the availability of “smart” insulin pens, pen caps, and other attachments with higher tech features compared to standard insulin pens. Do you currently use any of the following smart insulin pens/caps, or smart attachments?
  Is anyone aware of a comparison study that looks at these devices?
- 6 months, 3 weeks ago
  
  KarenM6 likes your comment at
  Recent advancements in insulin pens have led to the availability of “smart” insulin pens, pen caps, and other attachments with higher tech features compared to standard insulin pens. Do you currently use any of the following smart insulin pens/caps, or smart attachments?
  Is anyone aware of a comparison study that looks at these devices?
- 7 months, 3 weeks ago
  
  jo likes your comment at
  If you use an insulin pump, do you order your pump supplies through a durable medical equipment supplier?
  Since Insulet has not been able to get the Omnipod defined as DME under Medicare regulations, they now tell everyone how great it is to be able to get it through Part D plans. It puts you in the donut hole about January 2nd AND means that your insulin isn’t covered under Part B either.
- 7 months, 4 weeks 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.?
  I expect that we’ve all had that feeling about how stupid payers can be when it comes to T1D.
- 8 months ago
  
  Katrina Mundinger has commented in the same post you commented in :
  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
  Someday, maybe, they'll cure T1D! ;)
- 8 months ago
  
  Karen Taylor has commented in the same post you commented in :
  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 switched to the Tandem t-slim IQ and Dexcom 5 months ago. I use to use the OmniPod but it was costing me too much out of pocket. I love the Tandem but totally dislike the tubing. I do miss the tubeless but now that I see you're having so many issues with the OmniPod I'll continue dealing with the tubing for now. Hopefully Tandem will become tubeless some day --- soon.
- 8 months ago
  
  Jneticdiabetic has commented in the same post you commented in :
  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
  Please don't stop believing in a cure T1D friends! I too was told by well-intended nurses at diagnosis that a cure was right around the corner (27 years ago). For the past 20+ years, I've had the benefit of working with a team diabetes researchers who are trying to solve this puzzle. I've gained an ever-growing appreciation for how complicated this disease is and the important regulatory requirements in place to make sure ideas are thoroughly vetted before they can be tested on us. I attend an annual diabetes research conference and there are dozens of new, genetic factors, subtle molecular and immune cell irregularities discovered each year. Frankly, it a miracle anyone in this world has normal blood sugar!! Each discovery helps identify new clues for how T1D develops and potential new targets for curing it. It can feel like we've been working to solve a 1,000 piece jigsaw puzzle, and then discovered it's actually 10,000 pieces. One discovery I'm particularly excited about: it used to be thought that by the time T1D is diagnosed we had little to no beta cells left, but studies of T1D pancreases donated after death have found in many cases there are still lots of beta cells present, even many decades after diagnosis; they're just not working (see nPOD study). That opens up exciting new pathways for potentially curing T1D. Maybe we don't have to replace the beta cells, but can revive the ones we have left! My hunch is T1D has been challenging to cure because it's a disease of many subtypes. We all don't make enough insulin, but the mechanisms that got us there and the challenges each of us face after vary. Some of us were diagnosed very young and were fine one day and in DKA the next. Others developed T1D well into adulthood and some even managed to survive years misdiagnosed as T2D. What it takes to finally cure each us will likely vary as well. Not a one cure fits all, but more likely a variety of combination approaches tailored for different based on disease stage and subtle. I remain optimistic and I hope you all will too. ♥️
- 8 months ago
  
  Lynn Smith has commented in the same post you commented in :
  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 gave mine a three. I am currently on the Omnipod 5 and have been very disappointed. Their algorithm is so bad that you have to put in abnormal Insulin to Carb and Correction factors to not run really high all the time. Of course, during the 2 hour downtime when Dexcom is warming up and you have to turn on Manual Delivery, those factors don’t work; they are too high. In addition, I have had regular problems with the receiver not communicating with the pod, even though I have the receiver right next to the pod. What ends up happening is I have to turn the receiver off and turn it back on and the problem goes away. But that’s a ridiculous amount of hassle. Bottom line is I don’t use the Automated Mode at all. I will keep waiting until either they get it working more efficiently or someone comes up with a better algorithm for a tubeless pump. I will never go back to a pump with tubes. 😬
- 8 months ago
  
  JeremyW has commented in the same post you commented in :
  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
  Check out InPen!
- 8 months ago
  
  Brian Vodehnal has commented in the same post you commented in :
  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 would put 5, but I'm waiting on my Inhalable insulin.
- 8 months ago
  
  Jan Masty has commented in the same post you commented in :
  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 bit torn on this. I’m on the tandem and dexcom like many others. It’s convenient to always have insulin with you but I really don’t feel it’s any better control than I had with mdi. Plus the tandem sometimes ( often ) causes highs because it stops delivering any insulin when I get down to 110. So then the glucose goes up again more than I’d like! Frustrating business. Did not mind mdi but want to keep trying the new tech. Someday maybe they’ll get it right.
- 8 months ago
  
  Jan Masty has commented in the same post you commented in :
  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
  26 years? Try 63 years ago….still waiting….
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