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      Why aren't there more studies on heart disease risk with only T1Ds? I have read peer reviewed medical articles that confirm that T1Ds were not studied exclusively in statin research. We were advised to be treated with statins even if our cholesterol was excellent and there were no other risk factors. I suffered from elevated A1c, weight gain, insulin resistance, extremely low cholesterol which led to vitamin D deficiency which caused respiratory problems and inability to exercise or enjoy leisure activities due to breathlessness and muscle pain. Doctors believed that any symptoms reported by patients were due to the "Nocebo effect" despite my improvement when I didn't take statins for six months when I forgot to refill my prescription! I suffered these side effects from 2002-2016 when I finally found a doctor who took me seriously. We need to be treated as individuals with T1D, not treated based on studies on the majority of T2 studies.
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      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
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      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
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      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
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      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
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      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
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      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
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      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
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      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
    • 10 hours, 10 minutes ago
      Lenora Ventura has commented in the same post you commented in :
      At the time of your T1D diagnosis, did you already personally know anyone who had T1D?
      Yes. My dad also diagnosed when he was 9, his baby sister diagnosed w/ in 6 months of his diagnosis when she was 5, and his older brother who was diagnosed @ 33.
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    Based on your experiences with insurance companies, do you feel that they understand the needs of people with T1D?

    Home > LC Polls > Based on your experiences with insurance companies, do you feel that they understand the needs of people with T1D?
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    If you use an insulin pump or CGM, has anyone ever mistaken your device(s) for any of the following? Select all that apply!

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    53 Comments

    1. Wanacure

      The KP endocrinology team sure does. I think ALL the Seattle health care providers are pretty knowledgeable about diabetes. The problem is the increasing wealth gap in this and many other countries. And of course medical profits should be verboten. In Switzerland private health care companies compete, but must be non-profit. Why not here? Or single payer universal healthcare?

      3
      8 months ago Log in to Reply
      1. Becky Hertz

        There is actually a lack of knowledge even in the Seattle area. Many adult T1’s are misdiagnosed. Type 1 is not generally well understood.

        1
        8 months ago Log in to Reply
      2. KarenM6

        I think you are lucky in where you live and who you have on your KP team.
        I know a KP patient who can’t get an endocrinologist on his team. His diabetes is taken care of by a cardiology nurse. She is not a CDE. Also, they won’t approve occupational therapy for stroke complications because the complications, and I quote, “aren’t bad enough.”
        This KP patient is getting short shrift.

        BUT, please know that I am GLAD to the nth degree that your experience is good!!!!!

        I also agree with you about medical profits being verboten. And, health care should not be only given to those who can afford it. And, I responded to someone else on my feelings about how medical insurance companies achieve their profits.
        It just seems so awful to me sometimes to be a patient in the US.

        8 months ago Log in to Reply
    2. Ahh Life

      Customer needs? Probably to three decimal places.

      Their own needs? A keen understanding of statistics, actuarial science, and contract law.

      And we, the consumers, get caught up in the crazy quilt-work buzzsaw called ā€œThe Systemā€ otherwise known as heads we win tails you lose. Sigh!

      5
      8 months ago Log in to Reply
    3. Cheryl Seibert

      My current insurance company has not given me too many problems. However, insurance companies and pharmacies often force medication changes to save them money regardless of the health implications. Also, they often have a single policy for ALL diabetics. Which is NOT effective nor safe. Example, insulin pump and CGM users often have infusion sets and sensor sites fail and insulin needs vary day to day, but we still can’t reorder supplies before the magic ‘next refill’ date.

      7
      8 months ago Log in to Reply
      1. KarenM6

        If I could give you a hundred “thumbs up”/”likes”, I would!

        8 months ago Log in to Reply
      2. sweet charlie

        All so true … but I must say that I had a few problems with Dexcom Sensors and they sent me a replacement really fast !!!

        8 months ago Log in to Reply
    4. Mary Dexter

      They know we are dependent on them to stay alive and that that is extremely lucrative for them

      8 months ago Log in to Reply
    5. Nevin Bowman

      NO!!! Sorry, but “we’re waiting on documents from xyz” etc etc, does not keep me alive. Give me my meds or I die and you can sort the other stuff out later.

      3
      8 months ago Log in to Reply
    6. Larry Martin

      They sure understand type 2s where they and their co-owned PBMs can push pills they make huge margins on. They do not understand type 1s that use only insulin and pumps. CVS Caremark will not even run insulin via Medicare Part B which is a Medicare law. They do the same for meds required for heart pumps. They are pure evil. I asked Medicare why they do not inforce the Insulin rule for pump users and they said, “we do not have the manpower to do it.” So Pharmacy Benefit Managers can break the law, but I cant.

      3
      8 months ago Log in to Reply
      1. Bonnie Lundblom

        I get my NovoLOG for use in my Tandem pump at CVS without any problem under Medicare Part B. I wonder if this varies among different regions of the country?

        8 months ago Log in to Reply
    7. TEH

      Insurance companies understand keeping the CEO and seinor executives rich!

      3
      8 months ago Log in to Reply
      1. KarenM6

        Agreed wholeheartedly!
        I saw a list of executive compensation (on the internet, so must be taken with a large grain of salt).
        Since 2012 (so about 10 years of total compensation), the highest paid CEO was at Cigna with about $366 million dollars. $36 MILLION per year average is ridiculous!
        And that is all built on charging us outrageous premiums and nickel and diming the patients to death on what they will or won’t pay for. (I would not doubt that that statement could be quite literal in some cases.)
        The smallest was $112 million which still means averaging 11.2 million per year.
        There are other problems with medical insurance spending, though. For instance, health insurance companies are technically only allowed to keep 15 to 20 percent of premiums. But, that means, they could, in theory, allow premiums to grow and get out of control because they would then be allowed to keep more money.
        I believe that how insurance is handled in the United States is out of control.
        That’s my 2 cents! :/

        8 months ago Log in to Reply
    8. Jane Cerullo

      I had a difficult time when I decided to switch from pump to MDI. Had to pay a copay for insulin pens. With first Medicare Advantage plan that was supposed to be for people with chronic illnesses, I would hit the ā€œdonut holeā€ and pens would become too expensive. I switched insurance plans and now pay a copay of $210 for three months supply of both long and short acting insulins. But why? Why is insulin free with pump under Part B. But so expensive if you want to switch to MDI. Not fair! But after 6 months am much happier without a pump attached to me. May change but right now it works for me.

      8 months ago Log in to Reply
      1. sweet charlie

        Look into Walmarts “Relion” Novolin, at $25 a vile.. No prescription required !!

        8 months ago Log in to Reply
    9. pru barry

      I wonder how many people with diabetes work for insurance companies. My guess is a very low number, and perhaps that’s a small reason for the abysmal treatment we get. Bureaucracy with its little aide called pharmacy just don’t seem to get it!

      1
      8 months ago Log in to Reply
    10. Glenda Schuessler

      I find I experience more difficulty with the companies from whom I order supplies. They seem to have little or no understanding of Diabetic needs and how to best care for them. Often a case of “the Dr. didn’t send this”, Dr. office did with proof, the insurance company hasn’t. . . . .but they have. It seems with each supply order there is a new hurdle and hours on the phone.

      2
      8 months ago Log in to Reply
    11. Megan Noack

      I waited 2 weeks for a prior authorization for glargine. I use an insulin pump and needed glargine as back up for pump failure.

      8 months ago Log in to Reply
    12. qachemist

      Even worse is Medicare and the restrictions imposed on Medicare Supplement and Part D plans. They’re glad to treat consequences of poor management but not to help us manage well.

      6
      8 months ago Log in to Reply
    13. dave hedeen

      plain Medicare, No; Medicare suppliment Yes

      8 months ago Log in to Reply
    14. Lynn Smith

      I have been very blessed with my insurance company that I have had for nearly 40 years. They have extra programs for diabetics and I haven’t had any problems with coverage. I get rewards on a debit card for simply answering a health questionnaire annually and reporting my A1c twice a year. I also receive free test strips to use in the meter they supplied which, of course, I only use if I’m having trouble with my Dexcom sensors. So, like I said I know I am very blessed, but my answer is Yes.

      2
      8 months ago Log in to Reply
    15. Lawrence S.

      This question caught me by surprise. I said “other.” I don’t usually match the thought of “Insurance companies” with “understand the needs of people”. When health insurance companies went private years ago, they became “for Profit” companies. Their purpose is for profit. The more profit they make, the better for them. Insurance companies lose money on expensive medications and durable medical equipment costs, so they try to avoid paying for them. So, we “generic” drugs. Back in 2006, I had to convince the insurance company that the CGM would save them money before they would cover it.

      4
      8 months ago Log in to Reply
      1. Lawrence S.

        I forgot to mention Medicare. They don’t care at all about the needs of people with T1D. They are just a large bureaucracy with people who read their answers from books to questions that you ask. I don’t get any sense of caring from the Medicare employees with whom I speak. For Medicare, its a definite “No”.

        1
        8 months ago Log in to Reply
    16. Grey Gray

      Haven’t had insurance since the 1st year of the Obama scam… took 5 years to pay that back with penalties and interest. Now I find that through discounts for being uninsured that paying for my Diabetes( even buying pumps) is cheaper than insurance premiums. Fortunately other than being type 1, I am one of the healthiest people I know…

      1
      8 months ago Log in to Reply
    17. Joan McGinnis

      It depends on the person answering some understand and some don’t know anything.

      1
      8 months ago Log in to Reply
      1. sweet charlie

        Yes and some of them are an ocean away from the US ..

        8 months ago Log in to Reply
      2. Ahh Life

        I would only correct Sweet Charlie a bit, “An ocean or 2 or 3 away.”

        8 months ago Log in to Reply
    18. karolinamalecki7@gmail.com

      In general, no. However, the first person I spoke to at Cigna (I was still in the hospital at diagnosis) was amazing. Her son had type 1. She told me dexcom was covered, to get 90 day supplies to be cheaper, and about insulin coupons. I’m forever grateful for that experience but have never spoken to anyone else who understood anything.

      2
      8 months ago Log in to Reply
    19. Dave Akers

      I don’t think they care about needs of patients. They care about the rebates manufactures are forced to compete over to get on the preferred product list. If they cared, they may listen to doctors orders.

      2
      8 months ago Log in to Reply
    20. AnitaS

      For the most part, my insurance covers everything 100% except with insulin which I have a small co-pay for. However, just recently, my insurance denied afrezza. Makes me a little disappointed as I think afrezza could definitely help me occasionally when a high blood sugar is stuck in the high numbers. My endo is trying to reach out to other avenues to get me the afrezza.

      8 months ago Log in to Reply
    21. Jneticdiabetic

      I think it’s hard to understand T1D needs unless you have T1D or are responsible for carrying for someone with T1D. I was diagnosed at 18y and can remember how naive I was then and probably would still be if it hadn’t been part of my life.

      2
      8 months ago Log in to Reply
      1. Jneticdiabetic

        I did have to negotiate with insurance for a year to get them to approve my first insulin pump. At the time I was having frequent severe lows and requiring glucagon about four times a year. Had to make the case that it was good for me AND the insurance company’s bottom line.

        1
        8 months ago Log in to Reply
    22. Meghan Larson

      Not at all.

      1
      8 months ago Log in to Reply
    23. Drina Nicole Jewell

      My previous insurance company was AMAZING!!! But they merged with another company and dissolved into it and now are not offered in my state. My new one is horrible. I can’t get my trulicty not will it cover my certrizine 3x a day for my chronic urticaria/hives. Among other prescriptions it won’t cover

      8 months ago Log in to Reply
    24. kristina blake

      So many good and heartful responses. The primary “client” for insurance companies is their shareholders. Yeah, T1D is expensive, but…the price insurance companies pay Pharma and device companies is about 50% of retail – so not nearly as expensive for insurance companies as for patients. My monthly premium (paid for currently by my employer) is about $1,000/month. They are still raking in a lot of $$ even if they do cover what I need. And as was mentioned above, health plans seem willing to pay a lot of $$ for an ER visit than some $$ to keep us out of the ER. (the average cost – a few years ago, my data is old – of a visit to the ER in the US is $17,000.

      I also think they use the fact that many people change insurance companies throughout their lives. Either their employer contracts with a different company or insurance companies change plans offered. With that being the reality, even if insurance companies recognize that helping us get what we need (rx’s and devices) keeps us alive and out of the emergency dept, they also know that by the time things get really bad for us, we will most likely be another insurance company’s problem.

      I have also run into incredibly stupid people when I have had to call the health plan. Yes, I still have T1D – there is no cure. No I am not too old to have T1D (40% of new T1D Dx’s are adults – hence the name change – and those who Dx’d with T1D children, if they are lucky, get to grow up to be adults with T1D). I wish I had known about working for an insurance company. I could have gotten job and practiced medicine with just my HS diploma.

      3
      8 months ago Log in to Reply
    25. Patricia Dalrymple

      Through my employer, my care has been good. I pay nothing for test strips and insulin (except of course what they deduct from my pay). But it sure as hell beats paying for it all out if my pocket. For that, I am grateful for insurance.

      8 months ago Log in to Reply
      1. Patricia Dalrymple

        But to answer the question, as with everyone else, once I explain it, I get good results.

        8 months ago Log in to Reply
    26. Sue Martin

      They have gotten better over the years. I once had insurance cancel my coverage for DexCom after they had covered it for a year. My doctor and I wrote a letter and they reinstated it.

      8 months ago Log in to Reply
    27. Greg Felton

      I answered ā€œyes.ā€ Do they understand? Sure. But do they care, or does it matter when running a business? No.

      3
      8 months ago Log in to Reply
    28. mojoseje

      My last insurance company denied my need for my pump supplies and CGM sensors because when their on-staff doctor looked at my A1c, they concluded I didn’t need them. This doctor completely did not understand that I am in control BECAUSE of my closed loop CGM/pump. The doctor they had deciding my fate was a doctor whose specialty is sports medicine.

      5
      8 months ago Log in to Reply
    29. cynthia jaworski

      It is a pity that the insurance companies dictate how health care is provided, since basing decisions upon medical knowledge is varies among the different c ompaniies. My favorite example is coverage for cgms. From what I read on T1d group websites, some companies will not allow coverage for a cgm unless the patient demonstrates an excellent blood glucose record. Other companies consider a cgm unnecessary if a patient already has decent bg control.

      3
      8 months ago Log in to Reply
    30. Bob Durstenfeld

      I have not had a single insurance company that understands variable dosing of insulin. They follow a fixed treatment regime.

      5
      8 months ago Log in to Reply
    31. ELYSSE HELLER

      I have had the same insurance since 1993 and all of the sudden I need Prior authorizations for many things which I have never needed before. I am still waiting to get the PA for the omnipod 5 system and it is taking months; VERY FRUSTRATING! I always thought that my BCBS federal employee program was very good,. Many years ago my dog chewed up my insulin pump (medtronics, not a disposable pump like the Omnipod), they got me a new one right away, no fuss at all. as stated above; VERY FRUSTRATING!

      2
      8 months ago Log in to Reply
    32. Jillkdubois

      I had run out of syringes once when I was first diagnosed and Kaiser would not give me more until my next prescription for them renewed. I couldn’t even buy them from them at full price, I had to go to Walgreens and buy a box. I was so disappointed in the whole system.

      4
      8 months ago Log in to Reply
    33. George Lovelace

      Ins. Cos. simply want us “Sick For Profit”

      3
      8 months ago Log in to Reply
    34. Becky Hertz

      Like most complex conditions, no. Everyone is different and experiences this condition uniquely.

      8 months ago Log in to Reply
    35. ConnieT1D62

      Sometimes, but mostly No.

      1
      8 months ago Log in to Reply
    36. Molly Jones

      I have only dealt with one insurance company during my twenty years with T1D, one of the best companies, previously mentioned as the golden handcuffs that keep my husband from ever considering a different job. I pay nothing for any diabetic supplies or needs. I am also able to upgrade when suggested by my doctor.
      I don’t see this on other insurance companies when I look to choosing one for the future, so my answer if I don’t know.
      Insurance companies are businesses that need to make a profit to survive. This will be getting harder in the decades to come with the proportion of old to young. They probably run screaming from my medical profile.

      8 months ago Log in to Reply
    37. KarenM6

      There might not be enough gigglebytes on this question for me to answer on all of how I feel.
      But, the short answer is, absolutely not. They don’t understand, nor do they care.
      And, they do everything in their power to protect their profits even if that means I can’t get life-saving medication or equipment.
      I once could _not_ get _insulin_ because I was a month or so early in requesting it. I had to because what I had became ruined through a technical issue with a refrigerator. They were _adamant_ that they would not give me the insulin I needed.
      I had to buy replacement insulin (of a different kind) out of pocket. It was expensive (about $150 per bottle). I can’t even imagine having to do this these days when insulin is going for $300 to $400 per bottle.
      I had to get a loan from my generous employer back then… I’d probably have to get a bank loan if it happened today.

      1
      8 months ago Log in to Reply
    38. PamK

      I have spoken to some insurance representatives who seem to understand. Unfortunately, those who are setting the rules at the insurance companies do not. There are boundaries which they claim are necessary, but I have never understood why. They say it is to cut costs, but don’t understand that the right meds/tech are more important to us than saving a few dollars.

      2
      8 months ago Log in to Reply
    39. Randell Cole

      Maybe, but they don’t care. They only care about their profits.

      3
      8 months ago Log in to Reply
    40. persevereT1D52

      100% NO. HELL NO

      4
      8 months ago Log in to Reply
    41. Bonnie Lundblom

      Sometimes, when I’ve talked to an insurance worker who has actual real life connections to Type 1 diabetes, through either a family member or friend they seem to get it a lot more than the others who don’t have any knowledge or experience with T1D.

      8 months ago Log in to Reply

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