Advertisement

58 Responses

  1. tmana
    tmana April 7, 2014 at 4:52 am | | Reply

    The issue, on a PUBLIC HEALTH scale, is “the needs of the many outweighing the needs of the few”. Will providing excellent care for PWDs mean that patients without diabetes won’t be able to get antibiotics for strep throat, or splints for fractures? Will providing care for the less-than-millionaire elderly sick mean that we don’t have the money to pay for poor children’s vaccinations?

    It’s a real issue, and as much as we’d love to not have to pay out-of-pocket for the cost of our chronic illnesses, the economic issue is that we either have to (and should have to) fork up the money ourselves, or settle for care that is nominally sufficient, but perhaps less (even far less) than the best that is available at a given time and place.

  2. Mr Emigrant
    Mr Emigrant April 7, 2014 at 4:52 am | | Reply

    Well IMHO, i agree with the NYT. Having been a care giver for diabetics for 30 years, the biggest improvement by far has been in the quality of insulin and deliverability through a disposable pen. Blood testing devices have also improved.
    As for pumps and CGMs, the results are mixed and do NOT justify the greater expenses.
    Sure there are people with specific lifestyles that require these devices, but then generally they have the income or community interest to pay for them. I am thinking specifically of athletes and those with demanding jobs.
    Otherwise, technology that requires 10 blood tests/day or CGMs should not be encouraged. And bloggers that encourage the technology while taking bribes from the pharmaceuticals should be ostracised.

    1. KathyB
      KathyB April 7, 2014 at 6:37 am | | Reply

      Well, IMHO, I totally DISAGREE with the NYT and Mr. Emigrant. I have been a caregiver of a T1 child for 7 years, who was diagnosed at the age of 3. After trying traditional injection therapy for my then 3 year old, we moved to an insulin pump and a CGM as soon as we could get them. He was and still is hypo unaware, and I am confident that the CGM has saved him more than once. A small child’s insulin needs are often so small, it only makes sense use a pump rather than injection, and therefore DOES justify the technology. I don’t think of my now 10 year old as having a specific lifestyle that demands these devices. He is just a kid. His devices help him live a much easier life than without them. And even with them, we often test 10 times per day. Diabetes is part of our every moment, and these “expensive devices” make those moments much more manageable.

      1. Mr Emigrant
        Mr Emigrant April 7, 2014 at 6:45 am | | Reply

        As I said there are exceptions, although I suggest the pump is dangerous. I know medical practitioners are pushing the pump for very young diabetics.
        The point of the article – as I understood it – is the pump/cgm solutions are being pushed as mainstream. A 3-year old diabetic is not mainstream.

        1. Michele De Smet
          Michele De Smet April 8, 2014 at 3:45 am |

          “A 3-year old diabetic is not mainstream.” Why would that matter? My son was 2 when he was diagnosed and was on a pump by 3 1/2. He is 10 now. It has saved his life and the ability to attend school easier. Try getting a school staff to give shots to a 3-4 year old. We fight hard enough to get what our child are to provided under the law (Amercians with Disabiities) and now we are going deem the equipment he needs to have a decent quality of life as an “accouterments”? I agree that the CGM is a little more muddy, but the pump is essential, Some people need the CGM to live: the don’t recognized the lows. I am a nurse and the caregiver of a a T1 child. Unless you have lived this disease 24/7 as we do-do not presume to know what is mainstream or necessary.

      2. cindy spaide
        cindy spaide April 7, 2014 at 7:58 am | | Reply

        I to am hypo unaware and my doctor would not let me use the pump have one never used in my closet I am 57 and they foung my type 1 at the age of eight just turned 8 and it is pure hell have the hypo unawareness

        1. Maxsmama
          Maxsmama April 7, 2014 at 9:04 pm |

          Mr. Emigrant, you are wrong sir, one of the most significant rises of type 1 has been in children under 5…we unfortuately are not the exception. Sir, it is very difficulty to dose 1/4 unit’s for meals and have real estate for 8 shots a day. Add to it the 1/4 chance of a seizure with the under 5 group and you are totally without sleep and constantly on edge. The pump and CGM are game changers and perhaps have saved more than one little one.
          Welcome to mainstream. Don’t believe me, call JDRF….

    2. Molly McElwee-Malloy, RN, CDE
      Molly McElwee-Malloy, RN, CDE April 8, 2014 at 7:00 am | | Reply

      Mr. Emigrant, I would be curious as to the satisfaction of the population you give care to. Diabetes Technology has made my life easier and healthier. I can say the same for my patients. Would you invite your patients to comment on this? I’d like to hear how they perceive your care and comments.

    3. Natalie ._c-
      Natalie ._c- April 8, 2014 at 8:15 pm | | Reply

      Mr. Emigrant, I have hypoglycemia unawareness. While I have never actually passed out or had a seizure, I have, on several occasions been too befuddled to treat hypoglycemia that I didn’t feel in time. Fortunately, they happened when I was with other people. I live alone, so who is there to help me if I get that way at home? There is no one to give me a glucagon injection, or call 911. So my endocrinologist agreed that I should have a CGM, and that I should set the low level at 80, so that if I was dropping rapidly, I would have time to treat before I got too confused. I don’t think this is a luxury, and it matters not one whit to me whether the “results are mixed”. I’m a person, not a statistic. And if there is not a big enough market, this device would never have been made available at all. We who live with diabetes, whether Type 1 or Type 2 deserve to receive treatment just as much as those who get extremely expensive organ transplants, and tremendously costly anti-rejection drugs. Just as much as those who receive cancer treatment or just about any other overpriced medical treatment available in the US. Just because we LOOK healthy doesn’t mean that we aren’t struggling with a deadly disease.

  3. Jane Kokernak
    Jane Kokernak April 7, 2014 at 5:49 am | | Reply

    I was glad to see the coverage of diabetes as a chronic, serious illness in a front-page NYTimes story. As I read, I probably glossed over some of the problems with the article that you, Catherine, and other diabetes journalists noticed and tweeted about.

    The topic of the Times article seems to be more about the economics of device use and the problems with the American health care system. I found it less interesting as a story about diabetes as a pathology — it seemed very “illness lite.” For example, the author seemed to take it for granted that insulin is for managing blood sugar, as in *high* blood sugar. She did not explain how vital an insulin pump and glucose monitor, whether a regular home kit or a CGM, can help patients with tight control who have frequent low BGs and hypoglycemia. (This is why I switched to the pump more than 10 years ago, and why I am trying the CGM now.)

    On the other hand, in favor of the article, it does well represent the interest of device suppliers in getting patients to adopt these technologies. Yes, they are beneficial, but I have to imagine they are good money makers. When I was upgrading my insulin pump (and I left a comment about this in the NYT comment box), I experienced so much sales pressure. It was unbelievable, not far off from what I’ve experienced when buying a new car. And when I look at my account history in my mail order Rx supplier, it is amazing to see what my insurance company is billed annually for my pump and CGM supplies. It may be true that the pump and CGM devices are indeed “loss leaders” (like printers) for device companies.

    But, the devices are not only that. They are great improvements, technically, in disease treatment and management. One thing the article does not convey is that innovation is a path, and we are not at an endpoint. I do think that the CGM is limited — there is that lag in BG reading. However, I also think that we are at a moment in time with these technologies, and we must use what we have now as improvements are developed. The technology can only be as good as science’s knowledge of the disease and bio/chemical/mechanical engineering’s ability to exploit the science. Blood glucose testing is a hard problem to solve!!

    The article is about economics — macro and micro. The author could have better conveyed a truth that seems only implied: in the U.S., where the gap between rich and poor has widened in the last few decades, there are also health care haves and have-nots. That I have insurance the pays for my device and my supplies, but for a few co-pays, puts me in a luxury minority (though I am not personally wealthy). It is crazy that most people who need these technologies either don’t get them, or have to go into personal financial debt to access them.

    1. Catherine
      Catherine April 7, 2014 at 6:10 am | | Reply

      Thanks for sharing your perspective, Jane!

      1. Suzanne Lee
        Suzanne Lee April 11, 2014 at 2:56 pm | | Reply

        Love your thoughtful comments. Well said. Thank you.

  4. Marge Stromberg
    Marge Stromberg April 7, 2014 at 5:57 am | | Reply

    I recognize that if you’re poor or limited in money that just paying for insulin and syringes can be an ovewhelming cost – let alone add in blood glucose strips.
    However those of us with pumps (and CGM’s) know that without them we’d have wound up in ER with hypoglycemia or ketoacidosis. I had a co-worker with diabetes who wound up in ICU several times and at the end of her life was in the hospital for a month. I always wondered if all that could have been prevented with better care. My sister died from complications because the care she had was not adequate (nor was the education that she needed). Preventive care is a difficult quantity to measure perhaps. But in today’s medical world I suspect this will become even more im
    portant.

    1. Mr Emigrant
      Mr Emigrant April 7, 2014 at 6:21 am | | Reply

      My wife died at 35, but it was ineffective insulin (and incompetent doctors) that killed her. There is no scientific proof that pumps and CGMs improve outcomes, only “lifestyle”. I am all for improved quality of insulin. My son has benefited considerably by the improved insulin his mother – that he never knew – wasn’t fortunate to have back then.

      1. Clare
        Clare April 9, 2014 at 2:27 pm | | Reply

        I am so sorry that your you lost your wife to diabetes and that you have raised your son with diabetes alone.
        Your concern about a more equitable distribution of medical care is right on point. Too many of us forget how incredibly fortunate we are to have access to medical treatment and technologies that most of the world can only dream of:

        http://www.idf.org/lifeforachild/news/lfac-to-launch-1000-young-lives-donor-campaign.

        I encourage everyone who has spare supplies to donate to:
        http://www.ifl-usa.org

  5. Julie Blue
    Julie Blue April 7, 2014 at 6:01 am | | Reply

    Mr. Emigrant, It is not the technology that requires 10 blood tests a day, it is the diabetes itself. I’m a Type 1 diabetic. If I am to give myself the correct insulin dose, that means I have to check my blood sugar before every meal (3 times a day); if I am to safely drive my 2 children around and get to work, I have to check my blood sugar before driving (2 to 4 times a day); if I am feeling low or high, I need to check my blood sugar to make sure I don’t overtreat my low or to give myself the correct “correction” dose. I’m a blogger, and I use an insulin pump, and never has any pharmaceutical company approached me with any “bribes”; they’ve never approached me at all.

    1. Mr Emigrant
      Mr Emigrant April 7, 2014 at 6:23 am | | Reply

      Like I said, the pump requires more tests. And I made a point that some people’s lifestyles require the pump.
      I am not keen on diabetics driving. Get rid of the car, live somewhere you can bike and get rid of the pump and you will save a lot of money and be far healthier.

      1. Alex
        Alex April 7, 2014 at 7:42 am | | Reply

        Right, like those of us outside of major cities can just stop driving. Biking everywhere, if you’re even close enough to the places you need to travel to do that, can’t possibly play havoc with blood sugars. Oh wait…

        I do think Julie is being overly cautious and/or shooting for too low of an A1C if she feels it is necessary to test her blood sugar every time she gets in the car. There is still a bias among some doctors to treat every high blood sugar like an emergency that needs immediate correction. That sort of feeds into the tendency to recommend insulin pumps. It’s not totally necessary as I’ve been a diabetic for almost 30 years now and have maintained A1Cs in the 6-7 range with just shots of Lantus and Humalog. When I try to push those A1Cs lower I do get more hypoglycemic episodes that are probably more dangerous than simply allowing myself to have higher blood sugars. It’s almost always a trade off there.

        1. Mr Emigrant
          Mr Emigrant April 7, 2014 at 7:54 am |

          LOL, apart from the bike you agree with me.
          I live in Europe where I bike. My son doesn’t because his eye sight is not the best. But he walks or takes the tram.
          Moving away from the car is good for many reasons so even if it was off topic, why not say something? I am very uncomfortable about diabetics driving. Hypo awareness is way to hit or miss.

  6. Catherine
    Catherine April 7, 2014 at 6:08 am | | Reply

    Mr. Emigrant, I’d love to see some of the proof you’ve got that trivial little things like insulin pumps and continuous glucose monitors are not valuable tools in trying to manage your blood sugar, and thus prevent diabetes’ devastating complications. Do you have Type 1 diabetes yourself? If not, then I have a hard time entertaining your comments. If you do, then I’d love to hear your advice on how you manage to maintain the recommended A1c (less than 6.5%, per AACE) without testing your blood sugar multiple times per day, or taking frequent insulin corrections (that are much easier to administer via a pump). I’ve spent the past 13 years of my life thinking about diabetes every waking hour of every day. What’s your secret?

    1. Dr. Bob
      Dr. Bob April 14, 2014 at 2:50 am | | Reply

      Catherine, If I may chime in here (a bit late perhaps). I have type I DM and do not use a CGM or a pump. Check my BS on average 4-5 times a day only (occasionally less). HgbA1c is 5.0 never worry about hypos and am leading a very active life. How do I do it? Read Dr. Richard Bernstein and free yourself from mainstream medical bad advice.

  7. Mr Emigrant
    Mr Emigrant April 7, 2014 at 6:29 am | | Reply

    I read Medscape and the studies I have seen are pretty clear that the jury is till out on pumps. I also saw that people with A1C that are too low also have health problems.

    My son’s sugar is very stable with 3 shots of rapid and 1 of lantus per day. If he is active he does more tests than if he is not. He walks a lot, but not much other exercise.
    IMHO the lantus is far superior to a pump’s basal and they are coming out with even longer acting. Right now my son keeps forgetting it wears off in the afternoon. And lantus is far less dangerous as well. Really there is not debate about this.

    1. Doug
      Doug April 7, 2014 at 8:00 am | | Reply

      Mr Emigrant – Dr or not these are your opinions. Its great that your son does well on Lantus. I didnt. Many people need more variable basals than lantus can provide. Not everyones disease is the same.

      Do you think that Ins companies would pay the HUGE costs of pumps and sensors if they didnt provide some benefit to the costs of treating the insured ? I dont.

      When you have another 20 years of experience living with the disease come back and rejoin the discussion…

    2. Amy Halvorson Miller
      Amy Halvorson Miller April 7, 2014 at 9:01 am | | Reply

      See “Insulin-Pump Therapy for Type 1 Diabetes Mellitus” New England Journal of Medicine, April 26, 2012.

  8. Harry
    Harry April 7, 2014 at 6:53 am | | Reply

    I actually think the NYT article was very well-written. The DOC seems to frequently get bent out of shape when diabetes is prominently discussed in the media. I often find the tone of these complaints to be “that doesn’t describe me exactly” or “that’s not how I would have written it”. But that’s not really the point…the (relatively) small population of Type 1 diabetics isn’t really the prime audience for the NYT piece – they’re trying to explain both the disease and the cost of treatment to the general public, and I think they’ve done a pretty good job. If anything, we should be more upset about the rising cost of diabetes care rather than worrying that someone might judge you for pulling out your pump before you enjoy a piece of cobbler.

    1. Ian
      Ian April 7, 2014 at 9:41 am | | Reply

      well said, sir!

  9. Stephanie Bradford
    Stephanie Bradford April 7, 2014 at 7:24 am | | Reply

    I agree with both Jane and Harry. Great points. Managing Type1 diabetes is incredibly personal and the article isn’t here to make us all feel better or offer advice. It’s clearly a well researched piece that addresses a huge factor in diabetes management: Cost.

    My current insurance only allows me to use one brand of meter, and it’s not a terribly accurate one. The plan automatically capped the number of test strips I could use per month. It took a waiver to lift that cap (which is in place for all diabetics, no differentiating between Type 1 and Type 2.)

    I applaud this writer for for putting this story out there– on the front page of the New York Times! She illustrates, clearly, that this is not an easy disease and it is not cheap.

    When was the last time dealing with Type 1, specifically, was the focus of any mainstream media article?

  10. StephenS
    StephenS April 7, 2014 at 7:25 am | | Reply

    Amy, thanks for writing about this, and thanks for your passion for all of us living with diabetes. It shows, and I appreciate it.

    At the risk of encouraging the wrath of commenters, there are a few points I would like to make. I recognize these are just my opinions:

    1) The NY Times story is one in a series of articles examining the high cost of care in America (this was the 7th in the series). It was a story about cost. It could have easily been about cancer, or arthritis, or diabetes.

    2) Probably (though not definitely– remember Miss Manners), the writer doesn’t have a direct connection to diabetes. Obviously, a writer directly connected to diabetes will have more knowledge of the disease, and more passion for the story, than someone who doesn’t. And again, in my opinion, the story was about cost more than about the disease.

    3) It was on the front page of the paper. When was the last time a story involving diabetes made the front page of the biggest newspaper in the country?

    4) While there were things I didn’t like about the story (Dr. Zonszein’s comments come to mind), I thought it did a good job of explaining what we need and how much it costs, plus the big business of it all, for readers with no connection to diabetes.

    5) @Mr. Emigrant: I switched to pumping after bad lows while using Lantus nearly killed me. I’m glad your son is doing well. Your diabetes may vary. And I will never believe that costs for governments or profit margins for already wealthy companies should trump human lives, or the quality of human life. While we argue over how much profit is enough, people die. That is unacceptable.

  11. Stephanie Bradford
    Stephanie Bradford April 7, 2014 at 7:33 am | | Reply

    Also, @Mr.E, I disagree with much of what you put out as fact. But, I’m sorry to hear about the loss of your wife. I hope that your son is able to manage his diabetes in a way that allows him to live a full and healthy life.

    1. Mr Emigrant
      Mr Emigrant April 7, 2014 at 7:50 am | | Reply

      Getting the insulin correct for my son took time and evolved.
      But from my experience, the simpler things are the better.
      Thanks for you kind wishes.

  12. Jennifer
    Jennifer April 7, 2014 at 8:38 am | | Reply

    My opinions on this article are, like many, complicated, but two huge and UNcomplicated thoughts spring to mind:

    1) It’s amazing that a story about diabetes made the NYT (because I read it online, I didn’t even know if was front page until reading StephenS comment above – even better!)

    2) I am so, so, thankful for the insurance coverage I have. Life can change in a heartbeat but in this moment I’m not rationing my insulin or buying test strips on eBay to save money (been there), and for that I must be grateful. That being said: it is disgusting and discriminatory that not every t1d in America can say the same.

  13. MOira
    MOira April 7, 2014 at 8:40 am | | Reply

    I really appreciate Diabetes Mine and your ability to calmly discuss issues such as this. As a journalist (and a former writer for the NYTimes!) I wish the writer had not chosen the word ‘Gadget.” But it’s just a poor word choice. Overall, I think the message here is one that we in the D world should cheer — people are SEEING and READING that paying for diabetes STINKS. And you know, I guess I can get all huffy about them calling my daughter’s CGM (the one I can totally afford the outrageous copays for; lucky me!) a “gadget.” But I”d rather get outraged about the wicked cost of insulin here … about the slow slog toward creating generics to bring the price down … about strips and how pricey they are and how they don’t even work the best …. I guess I see more good in the story than bad (and yes, there is a wee bit of bad). And I guess I think we as a community have WAY bigger fish to fry then semantics in a news story.

    An aside: my child loves her CGM and we as a family fully support — both financially and verbally — the progress toward better pumps and tools. But right now she’s on shots per her choice and doing great. I’m sure she will pump again and Im thankful I can afford that for her. Now let’s make it an affordable choice for everyone … not just the select few.

  14. MikeH
    MikeH April 7, 2014 at 9:50 am | | Reply

    Yes, the NYT article is all about cost and does a great job delving into that aspect. Of course, we all need to be concerned about these costs that are waaaay too high and impact our broader society. But my worry is this story’s overall tone — that these very beneficial and often life-saving devices aren’t worth the extraordinary high and most-likely unwarranted costs. Because these innovations and advances are viewed by “experts” as luxury items we can easily do without; we should just suck it up because what they offer is on the same lines as giving me a choice in colors. The phrase Your Diabetes May Vary certainly applies, and I firmly believe that we all should have the choices to decide what helps us best manage and live with diabetes. Just because pumps or CGMs work for one person, doesn’t make it so for all. There are so many studies that do, in fact, justify the use of these devices as ways to better manage and reduce overall risk of long-term diabetes complications and costs. But of course, that doesn’t mean everyone fits that mold. My big worry with this NYT article is that it comes at a time when we are all focused on healthcare costs, and especially in our Diabetes Community we are battling insurance companies and Medicare officials for better coverage. And we’re even pushing device maker and the FDA toward more open-source data and interoperability. But if they were to read this NYT piece, the takeaway is: Why bother? None of that’s necessary. We are always preaching that YDMV and that we patients should have the choice to decide what’s best for us, but this cost-only mentality promotes the opposite and limits the choices we have. It scares me to think about a day when my insurance company will be able to win the war, using cost to justify their decision to not cover my insulin pump or CGM, and that — despite my hypo unawareness — less than three blood tests a day is adequate. That waking up in the middle of the night really isn’t that important, that testing before I get behind the wheel isn’t needed, and that ER and long-term complication costs are better expenses than just covering these devices that could prevent all of that.

    1. James C
      James C April 8, 2014 at 5:56 am | | Reply

      Thank you Mike for highlighting what I consider to be the major issue others seem to be missing … It was the TONE of the NY Times piece that is so unsettling!!

      Add the (willful?) mistakes and it risks being the kind of piece that can negatively impact perceptions, perhaps in a way that is harmful to the cause of people living with diabetes, now and in the years to come.

    2. JimS
      JimS April 14, 2014 at 8:13 am | | Reply

      Spot on Mike. It’s the implied message that is the most damaging aspect of the article.

      People outside of the Diabetes community have only so much room to remember the bones of this topic. If it’s that these ‘gadgets’ are mere conveniences that don’t have real medical value that’s what they’ll remember.

      The next some politician wails about the need for cost cutting and points to the Diabetes community, They may think that will cut costs instead of what it will actually do – raise them. Which will be bad for everyone concerned.

      I cannot believe how tone-deaf the NYTs is being over this. The public editor’s post makes it even worse.

  15. Terry Keelan
    Terry Keelan April 7, 2014 at 10:21 am | | Reply

    The only part of this article that outraged me was the report that test strips cost pennies to make and are sold for $1.50 each. Of course, we all ‘know’ that, but I wish the reporter had put out some more evidence.

    I read the article as one about medical economics rather than about Type 1 diabetes or the efficacy of our tools. It was gratifying to see “us” featured on the front page of the NYT, but it was not really about “us” was it. I also did not get the impression that the article dismissed our tools as high-priced gadgets. Yes, some of the features of those gadgets can seem pretty silly, but the point was that they were added as marketing tools for the benefit of the manufacturers, rather than as advances in treatment. (Although, a talking meter is certainly useful to the visually impaired.) Catherine Hayley was portrayed sympathetically and not as a shallow consumer grasping at the latest innovation because of its cool factor. In addition, the articles also mentions the exorbitant costs with Crohn’s and RA.

    I also found the accompanying graph to be misleading as it combines the cost of prescription drugs for both Type 1 and Type 2 diabetes even though the article is ostensibly about Type 1.

    Perhaps because I was diagnosed late and remember what life was like before diabetes (BD) I am not quickly upset by a poor choice of words (“gadget”) or advice from etiquette columns. I empathize with people’s ignorance about Type 1 since I was ignorant myself, as I am ignorant about other topics that just aren’t in my wheelhouse.

    My take away from the article is that medical costs are high because medicine is treated like a business rather than a public service. Personally, I think it needs a little of both, but it’s heavy on the business side in this country.

    Terry

  16. Terry Keelan
    Terry Keelan April 7, 2014 at 10:48 am | | Reply

    This is an aside, so delete it if it’s distracting, but there are two statements in the comments that I can’t let go of:

    “And bloggers that encourage the technology while taking bribes from the pharmaceuticals should be ostracised. ”

    and

    “As far as payments from pharmaceuticals – it is unethical and it should be illegal for bloggers (who aspire to be viewed as journalists) to take them.”

    A ‘bribe’ is a payment made to influence a decision or action, usually for illegal purposes.

    I was about to go into a free speech rant, but I’ll get to the point. In this country we don’t make it illegal for people to speak no matter who is paying them to speak. Nor do we make it illegal for people to pay others to speak for them. Nor do we ban people from the internet because of who is paying them.

    Other than that, yes, an ethical blogger, aspiring journalist or not, will disclose who is paying them to tout their products or services. A blogger who does not should be ostracized, not criminalized.

    Rant over.

    Terry

  17. N Patterson
    N Patterson April 7, 2014 at 12:59 pm | | Reply

    My 5 yr. old niece has been diabetic since she was 2 1/2. Her pink pump makes life better for her in so many ways. She gets more accurate dosages than if we were doing syringes and it is much easier for her to handle emotionally. This year she started kindergarten. She is not ready to take responsibility for her own care, but the pump (and some of these other devices) make it easier for my sister to leave her daughter at school, in the hands of other people. I sure hope the newer technology will continue to improve and make her quality of life better. Everyone needs to remember fair is giving to everyone equally, it is giving everyone what they need.

  18. Meghan
    Meghan April 7, 2014 at 1:39 pm | | Reply

    I just skimmed over the NYT article and generally agree with the premise that the cost of treating of Type 1 diabetes is out of control. I thought back to your post, MikeH, on March 20, 2014 about Diabetes Device Wars. You stated that Medtronic has made a “bold policy decision” to no longer sell stand-alone insulin pumps. That made an impression on me because I’ll be needing a new pump soon and I have absolutely no interest in a CGM. To me, this is Medtronic forcing me to spend money neither I nor my insurance company should have to spend. A gadget, if you will, I do not want or need. I don’t know where to go with that…

    1. MikeH
      MikeH April 7, 2014 at 1:52 pm | | Reply

      Totally agree with you, Meghan, that the premise is a good one. And I agree with it. But just doesn’t seem balanced, to me, and feels like it’s painting these innovations as necessary reasons for the higher cost. And that’s not fair. You’re absolutely right, about the policy — MedT has said that, even though it appears now that you’re able to push for what you want and get a stand-alone pump (like I did) without a companion CGM. I’m totally against a policy like that, and agree that it very much seems like a money-grabbing decision. Of course for me, getting the stand-alone pump was so I could continue using my Dexcom CGM. But the same logic applies for those who don’t want or need a CGM. Overall, in the context of the NYT story, I hope that people can get what they want and feel they need in terms of insulin pump, CGM, or meter. We’re so limited by insurance and cost already, that I’d hate to see that get even more limited because some don’t think these tools are beneficial or medically necessary. It’s an individual choice and YDMV. Costs are high, no doubt. But the answer isn’t an across-the-board sacrifice of using these devices in the name of saving money.

  19. The Scoop – Diabetes Innovation Backlash | What Patients Want from Pharma | Drugstore Clinics | Collaboration Station

    [...] increasing cost of high-tech innovation in diabetes management, and this resulted in an interesting backlash among the diabetes community, many of whom were saying that although the article shed light on an important issue, it isn’t [...]

  20. David
    David April 8, 2014 at 10:18 am | | Reply

    I was once blissfully ignorant so I don’t blame non-PWD’s for not “getting it.” If you don’t have T1, you have no clue what these “gadgets” mean for your quality of life. The problem with any article is always going to be the ignorance of non-PWD’s to understand what it feels like emotionally, psychologically, and physically on an ever-shifting daily basis. I have personally tried both pump and Dexcom and the improvement in my quality of life was indisputable (no matter what any non-PWD, journalist, legislator, or insurance company might say). It makes me sick having to choose between feeling better or having more money for my family.

  21. AT
    AT April 8, 2014 at 11:52 am | | Reply

    I loved the article. I never interpreted the article that pumps and cgms are gadgets that aren’t necessary. I read the article that the the industry makes minor changes to already great products and tries to convince the doctors that the change is a vital necessity. And… then the companies are phasing out the older so people don’t have a choice but to use the latest and most expensive. I took it all to mean that if you have a pump, you don’t have to throw it away and get the newest best thing right away. But that’s not even the point of the article.
    “Meters that talk”? I’ve never heard of them but I would venture to guess that MOST diabetics don’t need a meter that talks to stay alive or maintain their BG. Yes, maybe SOME people do need them ( vision impaired comes to mind) , but most diabetics are doing fine without a meter that talks, especially if it is significantly more. YDMV (your diabetes may vary) and everyone’s needs are varied.
    I took the article as more of a hit on the pharmaceutical industry than the diabetese community.
    I’m glad that the article highlighted how much money you need to stay healthy and how the industry is set up to keep charging more and more. That’ s what I’m outraged about. 70% profit on insulin. I have to pay a 70% profit to keep my son alive? THAT IS SOMETHING TO GET ANGRY ABOUT. $133,000 for an arthritis treatment? That is more than some houses cost. THAT IS SOMETHING TO GET ANGRY ABOUT. This whole gadget hoopla is taking away from the real problem…. the fact that some of us may not be able to afford even insulin soon. The diabetese community missed the boat on this one.

  22. Puddin
    Puddin April 8, 2014 at 12:52 pm | | Reply

    I agree that the tone of the article was dismissive of the value diabetes tech provides. In my case, it is not only the accurate data and delivery methods that I benefit from. But, as a self avowed geek, having meaningful tech to monitor and use as a tool helps keep me engaged in my T1D. It reduces my (emotional/mental) fatigue levels by taking some of the workload off of me as well.

    I am glad that the article received front page placement. And I thought there was a lot of merit to the cost concerns outlined – which imho were just a portion of what is spent as it did not include doctor visits or any specialty care/rx due to complications.

    Last thought, BLIND people need monitors that talk you moron. (Sorry for the name calling, but how can the doc quoted in the article not freakin know that??!!)

  23. An Open Letter from @AskManny, @DiabetesHF to @NYTRosenthal, @NYTimes | Diabetes Hands Foundation

    [...] Also a 2008 landmark study funded by JDRF demonstrated the positive impact that Continuous Glucose Monitoring (CGM) has on blood sugar control. As a CGM user, I can attest to how much it has helped me improve my diabetes management and how many times it has literally saved my life, alerting me to a dangerous blood sugar low in the middle of the night. So I join the JDRF and the advocates who are insulted by Dr. Zonszein’s remarks. [...]

  24. Ann B
    Ann B April 10, 2014 at 6:02 am | | Reply

    Amy, What I think is interesting landscape is that this was written by an internist. Would an endo feel the same way? Probably not. If we look at the this with a broad lens on the writer’s MD credentials, it begs the question is the larger compliance problem for PWD the doctor’s education on the subject of diabetes and it’s technology?

    The NYTimes article is so frustrating, hurtful and harmful. Thanks for being one of the many voices out there.

  25. What I Need/Want/Deserve | Test Guess and Go

    [...] blog Diabetesaliciousness.  For some other well-thought out responses to this article, check out Amy’s post at Diabetes Mine and Bennet’s letter at Your Diabetes May Vary. Or just explore the DOC and [...]

  26. CNobleGo
    CNobleGo April 11, 2014 at 8:42 am | | Reply

    The year 2012 marked 90 years since the first person in history received insulin. Despite what some may believe, this life-saving drug still fails to reach many in need. Life-expectancies in some parts of the world are still less than what they were prior to the discovery of insulin. It is time to achieve universal access to insulin for all.

    Check out the http://www.100campaign.org/ to learn more about international access to insulin campaigns happening currently and how this human rights issue is being addressed.

    http://100campaign.tumblr.com/post/82226887355/when-is-it-enough-in-terms-of-costs-for-r-d-vs

  27. Louise K
    Louise K April 11, 2014 at 11:10 am | | Reply

    I have no problem with the technology itself, and I agree it can be an asset to a healthy life with diabetes, but these are first world problems!! I challenge you to visit anywhere outside of the USA/Canada/Europe and then tell me that you suffer because you have a minimed pump with tubing instead of an omnipod when you’re sitting next to someone who is injecting with 70/30. I challenge you to tell me that your new scroll wheel dexcom is a necessity over the black and white screened older version when you’re sitting next to a child who has one test strip to use in a 24 hour period. I challenge you to tell me you need a light on your meter so that you can test in the dark when you’re talking to someone who doesn’t even own a meter at their home. I challenge you to tell me you suffer from diabetes because you don’t have an omnipod, or the latest CGM, when there are people DYING around the world within one year of their diagnosis with type 1 diabetes because they cannot even afford insulin.

    The diabetes community has entirely missed the boat on this informative and accurate article that addresses the big issues in managing any chronic condition, not just diabetes. Take this debate outside your own tiny diabetes world, and have a look at the big picture.

    1. AmyT
      AmyT April 12, 2014 at 1:16 am | | Reply

      @Louise – the article was about the first world, and that’s what we are all responding to. Let’s stay focused here. And as noted above, innovation is a path towards (hopefully) improvements for all.

  28. John
    John April 11, 2014 at 6:17 pm | | Reply

    Pumps or needles, it’s a personal choice and what works for you and your lifestyle. I was on multiple injections for 15 years and now a pump for 17. While I personally would not go back on injections, I think it’s irresponsible to be pushed or told to try one over the other. Technology has its drawbacks but I don’t miss 4 shots per day.

    The issue I have is costs and I believe the JDRF has not done nearly enough except supporting disease management over all else.

    And, the technology compared to other technology is ugly, bulky, and insulin delivery is physiologically incorrect and dangerous.

    While I was in the hospital on an IV drip for insulin I felt much different. It’s hard to describe other than the insulin was used more physiologically correct.

    The T1 needs to demand more from research and the FDA. Clinical trial costs are counterproductive to a cure. That is why we don’t have one.

  29. An Uproar Over a Diabetes Article, With a Back Story — Diabetes Living Today

    [...] the past few days, I have read much of the criticism, including that on two blogs: Diabetes Mine and A Sweet Life, both of which make points worth considering. I have reread the article itself, [...]

Leave a Reply