11 Responses

  1. Scott K. Johnson
    Scott K. Johnson March 6, 2009 at 8:17 am | | Reply

    Great points Amy!

    It is so farging difficult to pull all of the pieces together that many of us just throw our hands up and figure out some other (and very much less effective) way to deal with it all.

  2. Scott Strange
    Scott Strange March 6, 2009 at 9:24 am | | Reply

    Yep, I seem to spend more time managing the folks on my “team” (esp the insurance company) than I do managing my condition.

  3. Reed
    Reed March 6, 2009 at 10:15 am | | Reply

    Amy – Thanks (again) for representing the needs of people living with diabetes. And I agree that we need a network that shares information with those that help us with our treatment plan. But I think the insurers (public & private) need help. Here’s a big (and possibly crazy) idea: a diabetes medical network with centralized patient data and access to the med professionals necessary to deliver results. We’d start small & the insurers would fund our trial. Success would be defined by the % of diabetics with targeted A1Cs. The benefits should exceed costs as the $s spent on quality preventative care is small compared to $s spent on complications.

  4. Jan
    Jan March 6, 2009 at 10:23 am | | Reply

    Naomi Berrie Diabetes Center, a part of Columbia Medical Center, is a comprehensive diabetes center in New York City that offers care, endocrinologist, nutritionist, eye doctor, CDE, all under one roof. They take most insurance. I highly recommend them for any and all who live within two hours of New York City. We did transfer to a very highly rated center in Westchester County, since it was so close to home. The new center would not fight insurance for our strips, limiting us to six per day. Naomie Berrie’s Pediatric Endocrinologist (Dr. Mary Pat Gallagher) makes sure my niece is covered with enough blood sugar strips (she is 12; hence highly erratic blood sugars) so she can test as many times as we need to and has also helped us get coverage for the cgms. Although we still had to fight for it, her input was crucial. Naomie Berrie also works with adults with Type 1, as well as children and adults with Type 2 Diabetes.

  5. M
    M March 6, 2009 at 12:02 pm | | Reply

    I’ve not often seen “lucky” and “Kaiser Permanente” used in the same sentence!

  6. Joseph Kim, MD, MPH
    Joseph Kim, MD, MPH March 6, 2009 at 4:42 pm | | Reply

    There really is a strong need to improve diabetes education among patients. So many individuals need personalized attention and careful counseling. However, they only get peripheral education and are expected to “learn as they go along.”

  7. Lauren
    Lauren March 6, 2009 at 11:21 pm | | Reply

    Speaking for myself, as a type 1, I have a hard time understanding the concept of “diabetes education.” I don’t get it. I have yet to speak to a “diabetes educator” who has a deep understanding of what type 1 is all about. I’m very skeptical of these educators; I could learn a lot more from Wikipedia or just googling “type 1 diabetes.” I am only a med student, I haven’t even taken step 1 of the boards yet, but I was asking lots of questions of these educators that they couldn’t answer. They couldn’t even cite studies or tangible, independently verifiable evidence to back up their A1c recommendations (such as my 5.2% A1c being “too low,” as I was told). That is a big problem. They just seemed to parrot a “one size fits all” out-of-date protocol that was useless and meaningless to me.

    I don’t like the idea of a care team, for myself at least. That whole concept rubs me the wrong way. I don’t anticipate needing a care team unless I wind up in the ICU, God forbid. It’s just as well that this idea turns me off because I have no doubt my Blue Cross wouldn’t hear of covering any part of it.

  8. Denny
    Denny March 10, 2009 at 5:06 am | | Reply

    Hey Amy: I pray every night to Obama in hopes that he will deliver us from diabetes. I know he will and I can sense that you know he will do this for us no matter what. I think a good start will be the total takeover of healthcare by the federal government. I don’t think private businesses should be allowed to make a profit on diabetes. The government can fix this and find a cure for us. Not the private sector? Why do you accept advertisements from the private sector? Perhaps the government could fund this site rather than you having to lie down with the devil to keep this going? Be creative and reject advertisement from businesses. We dont need them!

  9. Lauren
    Lauren March 10, 2009 at 3:33 pm | | Reply

    Wow, as a regular poster on this blog, I am really annoyed by this new crop of ranters who are basically mocking others rather than addressing serious questions.

    As a regular reader and commenter, I have often said things in my comments that are not popular, and therefore I know Amy is very tolerant and appreciative of the diversity of opinions among her readers. However, many of these most recent posts (such as the one above) are disrespectful, immature, and often absurd — not to mention completely uninformed about the entire subject of this blog, the reality of living with diabetes. What a shame.

  10. Jan
    Jan March 12, 2009 at 11:31 am | | Reply

    I also do want to make it clear that, at some point, you the caretaker/parent or PWD will know yourself/your child better than the CDE or endo and you should empower yourself to make the final decision regarding adjustments. That the endo or CDE can make a suggestion that is a bit “off”, as sometimes diabetes management is an art rather than a science and sometimes you just have to trust your own judgment over that of the “experts.” But it is crucial that the endo team will write the prescription in such a way that you can get the maximum number of strips if you need more, that they will help you get the continuous monitor if you need it — I see this as their main purpose. The only CDEs that I have found were able to make accurate adjustments and suggestions were the ones that had Type 1 themselves. Having access to the nutritionist (I personally did not find very useful, though some might), eye doctor, etc. under one roof is great. Endo can also spot other medical problems that may arise as a result of diabetes or help you with 504 issues with the school.

  11. Nicole
    Nicole March 13, 2009 at 1:50 pm | | Reply

    Amy,

    As a commuincations and marketing employee with a large DME I find your posts and this blog exceptionally informative. Thanks to outspoken diabetes advocates, I now know how to help provide you with better care and supplies.

    I couldn’t agree more about the myth of the healthcare team, and in my industry, I see it first hand.

    Please consider visiting the blog I write and administrate for our business, I try to discuss comprehensive topics on a daily basis, and please feel free to leave suggestions.

    I’ll definitely keep coming back here!

    Nicole

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