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    • 1 hour, 11 minutes ago
      Ahh Life likes your comment at
      If compensation were offered for research participation, what format would you prefer?
      Unmarked non-sequential bills under the table is preferred. Cash plus free insulin or CGMs would be fine too. Eversense is really missing out on an opportunity by not partnering with trials to offer a free E365 and insertion to get people to try their device.
    • 1 day, 12 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Every 9 days I have to have to change an infusion set after one day use to switch the sensor to the other side - come on deccom you can do better
    • 1 day, 12 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 12 hours ago
      lis be likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change infusion sites every other day rather than every 4th day. I’ve been doing this for years after I started to see my insulin requirements increase dramatically on the 3rd day. It’s not really “earlier than recommended” since my endo agrees with this schedule and writes my prescriptions to accommodate it.
    • 1 day, 12 hours ago
      Ahh Life likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I usually extend them rather than cut their longevity short. I am insulin resistant and if I don't refill pump at day 2 I can't get to day 3-4. So, I usually use it a day longer than instructed due to the refill. And before moving to G7 I would restart my CGM and get an average of 14 days with some rare, 21 day uses in the mix. Sadly, Dexcom has figured out how to make more money off us by forcing a restart every 10 days with a transmitter built in.
    • 1 day, 14 hours ago
      Molly Jones likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 18 hours ago
      Lawrence S. likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 18 hours ago
      Daniel Bestvater likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 20 hours ago
      dholl62@gmail.com likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      I change my infusion site early if it's ripped off (obviously) or if I'm running high for no reason I can detect. Changing the site can sometimes help. I only change my CGM early if 1) it's going haywire with my numbers (reading high or low without cause) or 2) sometimes it's just convienant due to scheduling. But that's usually one day early.
    • 1 day, 20 hours ago
      TEH likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Sites on my legs seem to get irritated with resultant higher glucoses by day 2, so I often change out these sites every 2 rather than 3 days.
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 1 day, 21 hours ago
      atr likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 1 day, 21 hours ago
      atr likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 1 day, 21 hours ago
      Chrisanda likes your comment at
      How often do you change infusion or sensor sites earlier than recommended?
      Starting in 1996, my midriff has received more pounding than the Gaza strip. Both look similar. Consequently, I change frequently, every 2.5 days or so. Whatever the landscape will tolerate. 📄🖍️o(≧o≦)o🧸
    • 2 days, 13 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 13 hours ago
      Ahh Life likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Assuming I would live long enough to complete it — I’m going to be 80, but I’m a healthy, active T1D.
    • 2 days, 15 hours ago
      Mary Thomson likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      I answered "maybe" because I am house bound and can do survey's online, but not in person. Also, I am 86 and not eligible for most research.
    • 2 days, 15 hours ago
      TEH likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 17 hours ago
      Kristi Warmecke likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
    • 2 days, 18 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      I don't have problems reading published results. I'm more concerned with information that doesn't get published or is just left out.
    • 2 days, 18 hours ago
      lis be likes your comment at
      If research results were shared directly with participants in plain language summaries, how valuable would that be to you?
      Why would you want to restrict plain language disclosure to participants? How about plain language for everybody?
    • 2 days, 20 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      Yes. At my age (according to the social security life expectancy table) I have 8.6 years left. Whew! Thank heavens for that point-six. 🍄🦋
    • 2 days, 20 hours ago
      Sarah Berry likes your comment at
      Would you be willing to participate in long-term research (1 year or longer)?
      All depends on location and age requirements
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    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?

    Home > LC Polls > 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?
    Previous

    Although it may vary based on different circumstances for you, on a typical night, in which of these blood glucose level ranges would you most prefer to be before going to sleep?

    Next

    If you use an insulin pump, which of these options best describes when you most often change your pump site?

    Sarah Howard

    Sarah Howard has worked in the diabetes research field 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.

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    37 Comments

    1. LizB

      I was diagnosed at age 19. I was a full time student working 2 part time jobs. I paid for my own insulin & syringes (NPH & R at the time). Test strips were incredibly expensive, much much more than they are now, so I rarely tested for 10+ years.
      My mother would occasionally buy a bottle of insulin and one year for my birthday she bought me a case of syringes. It was maybe 10 boxes, lasted forever!

      2
      3 years ago Log in to Reply
    2. KIMBERELY SMITH

      I was diagnosed when 57 years old

      3 years ago Log in to Reply
    3. Mary Dexter

      48 when first diagnosed.

      3 years ago Log in to Reply
    4. Gary Taylor

      It’s complicated. I was diagnosed when I was 18 and in college in the 1970’s. Costs were manageable back then. My parents helped for many years because they wanted to. My daughter was 23 when diagnosed and they helped her also.

      3 years ago Log in to Reply
    5. William Bennett

      I was 28, so it was all on me. I was in grad school, so covered by the University health plan, basically an HMO and not especially generous with things like hospital stays and specialist referrals. This was back in ’83, so insulin (R and NPH) and supplies (syringes, chemstrips) weren’t too expensive even OTC, though they were covered (with a deductible). Didn’t have glucometers yet, let alone CGMs, pumps and all the rest, not to mention insanely overpriced analog insuiins. So it wasn’t too rough economically. Be a lot harder now.

      3 years ago Log in to Reply
    6. Steve Rumble

      I was diagnosed while in the USAF, at age 22, and became responsible after my discharge that same year. However, because I was diagnosed while on active duty I was eligible for free T1D care through the Veterans Administration, which has continued since 1970.

      2
      3 years ago Log in to Reply
    7. Bill Williams

      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
      3 years ago Log in to Reply
      1. cynthia jaworski

        Same situation here. My bottle of NPH cost about $2 and it would last a month. No other supplies to speak of. I was no longer legible for my parents’ insurance around the time I graduated college, 1974. Dx in 1962.

        1
        3 years ago Log in to Reply
      2. sweetcharlie

        for me it was 1952 at age 20… even less $$$..

        3 years ago Log in to Reply
    8. J Mac

      I was 12 when diagnosed. after high school and started working with my own insurance. I do remember using syringes 2x to save.

      2
      3 years ago Log in to Reply
    9. Stephanie Cruickshank

      My parents insurance cut me off at 19

      3 years ago Log in to Reply
    10. Lawrence S.

      I answered “After I/they got established in a career between ages 23-25” I was 23 yrs old in 1977, when I was diagnosed T1D. At the time, I had graduated college, was married, and working full-time with health insurance. I have maintained some form of health insurance ever since. I did go back to college in 1978 for a graduate degree. But, I kept working throughout, and I was able to purchase health insurance.

      3 years ago Log in to Reply
    11. Jennifer Bounds

      At the end of the month of graduating HS bc I got married to the love of my life!

      3 years ago Log in to Reply
      1. Jennifer Bounds

        I was barely 11 when diagnosed. I left that out. Lol

        3 years ago Log in to Reply
    12. Annie Wall

      I was diagnosed at age 32 and have always taken on the expense of having the disease, fortunately always having excellent insurance.

      3 years ago Log in to Reply
    13. Debra Nance

      When I got married at 18 yrs old

      3 years ago Log in to Reply
    14. Jen Farley

      As soon as I turned 18. I am 54 now. I was not lucky, as soon as I was 18 I was a legal adult and everything was on me. Made me and my husband way more kind and supportive to our 3 daughters. Supportive and kept them on insurance and in school as long as possible. I feel most stress over our youngest, 23 and moving out, my husband has to take medical retirement and the insurance does not cover a chosen medical treatment. She said she is ok with it. She will work with an insurance when she gets a job after she has moved in with her best friend. She just graduated college!!

      3 years ago Log in to Reply
      1. Jen Farley

        I was 13 when I was diagnosed. Sorry I missed that part.

        3 years ago Log in to Reply
    15. Cheryl Weaver

      I was diagnosed when I was 14 years old, and I married at age 21. I went onto my husband’s insurance at that time.

      3 years ago Log in to Reply
    16. Becky Hertz

      It’s not really clear. I was financially responsible for my insulin and needles while in college (when insulin was inexpensive and they were no cgms and pumps were just starting out), but in my fathers insurance until I got my first “real” job out of college and was able to get my own insurance.

      3 years ago Log in to Reply
    17. Tracy Jean

      Even as an adult, my mother still helps me with the cost of T1D supplies. Very grateful!

      3 years ago Log in to Reply
    18. Janis Senungetuk

      I was dx at the age of 8. Was on my parents’ insurance until getting married during semester break as a college junior, age 21. Very fortunately insulin, syringes and urine test supplies were still around $10/no Rx needed in 1969.

      2
      3 years ago Log in to Reply
      1. ConnieT1D62

        Ah yes, I remember those non-RX days for insulin and syringes. Could just go to any Rexall or Lane’s Drugs and get what was needed. Usually paid cash.

        2
        3 years ago Log in to Reply
      2. sweetcharlie

        Janis and Connie….. For me it was agge 20 in 1962, so the cost was about $1.25 per vial that I used for at least 45 days until it was empty!!!!

        1
        3 years ago Log in to Reply
    19. Mark Schweim

      I was financially responsible for my own survival, in general more than 5 years prior to my T1D diagnosis which happened when I was 24 years young.
      However, during my first year post diagnosis, my income was low enough that State medical assistance covered all including my hospital bills incurred at time of diagnosis and that State funded medical assistance remained in effect until I was able to find employment with insurance benefits.

      3 years ago Log in to Reply
    20. ConnieT1D62

      When I entered college at age 18. My divorced custodial parent (mother) cut me loose and I was on my own. Don’t remember all details of how I managed back then, but somehow I did and survived. Now 60+ years with T1D and still going strong.

      1
      3 years ago Log in to Reply
      1. ConnieT1D62

        Diagnosed at age 8 in 1962.

        3 years ago Log in to Reply
    21. Maureen Helinski

      I had adult onset. T1D

      3 years ago Log in to Reply
    22. sweetcharlie

      I was on my own from age 18 ,,T1D at age 20 in 1952… way before big pharma was able to jack up the price of insulin!!!

      3 years ago Log in to Reply
    23. Patricia Maddix

      Diagnosed at age 11 in 1961. Was on my father’s insurance until getting married age 23 and using my husband’s health insurance. I had trouble getting a job due to discrimination against my diabetes, until I finally went into business for myself. During my dietetic internship at the University of California medical school at San Francisco students use the student health service, and everything was usually paid for. The big problem in those first years was that each time my husband change jobs, there was a waiting period for pre-existing conditions of anywhere from six months to 18 months where we had to pay for things, but as people have said, it was all cheaper back then. I remember when blood testing first came out in the early 1980s I had to fight with my insurance company for a very long time before they would cover any of that and then of course there were always the fights about how many test strips you would be allowed which were never enough.

      1
      3 years ago Log in to Reply
    24. KSannie

      I was diagnosed at age 19 while in college. There was a health center there, so the doctor and labs were covered there. But we never had help with supplies in those days. I purchased my own out of my own money. So I bought insulin and syringes. My husband had health insurance when we got married in 1972, which also covered doctor visits, but we still paid out of pocket for syringes and insulin. By the late 80’s I was reading about insulin pumps, but insurance did not cover those. We moved to England in 1991 where everything was covered by the National Health system, and my husband had premiums for that deducted from his pay, just like with the health insurance in the U.S., but syringes and insulin were free for diabetics, as were all prescriptions. We returned to the U.S. in 2006, by which time drug plans covered insulin and health insurance now included syringes and even pumps. So I immediately went on a pump. Everything has been covered since.

      3 years ago Log in to Reply
    25. GiGi

      I married in my senior year of high school and had a severely disabled child. I was caring for her full time so I was unemployed. My husband paid for my supplies which in 1979 was animal sourced NPH, Regular insulin and syringes. It wasn’t expensive as it is today.

      3 years ago Log in to Reply
    26. keith johnson

      There was not an option back then to remain on their insurance. I have been responsible for the bills since I was 22

      3 years ago Log in to Reply
    27. Babis Perantonakis

      I was diagnosed at age of 15 (63 years ago) but I had never to finance the cost of diabetes supplies until today because in my country (Greece) is totally free of charge by the State Health System. At the first 10-15 years (1970-1985) there was a small contribution from my part around 10-15%.

      3 years ago Log in to Reply
    28. Bruce Johnson

      In the initial days of managing diabetes, you did whatever was required to get the supplies you needed. Often this meant sharing supplies with diabetics outside your family (both my sister and I had Type 1) because there was no insurance available for at least 20 years after Rx.
      The entire family and other relatives as well contributed to buying diabetic supplies.

      3 years ago Log in to Reply
    29. Bruce Johnson

      As soon as you could work to contribute to the family budget. For myself at age 13 I had 2 paper routes (morning and late afternoon) plus part-time construction work on weekends, evenings, summer holidays, xmas etc. Both my parents worked, as well as my siblings when they were able to. Besides medical supplies, both my sister and I also were able to attend a Diabetes Camp in 1967 after our family gifted us the airfare.

      3 years ago Log in to Reply
    30. Britni

      I answered 23-25 because that was when I finally received insurance from an employer and started paying for my own copays and deductible.

      3 years ago Log in to Reply

    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? Cancel reply

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