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19 Responses

  1. Bernard Farrell
    Bernard Farrell July 7, 2010 at 10:23 am | | Reply

    Thanks Amy for this useful note from Lois. I found the meeting with the ADA folks was a very valuable part of our day at the Roche d-blogger summit. I hope that both sides (d-bloggers and ADA) will continue to work together.

  2. Scott S
    Scott S July 7, 2010 at 10:56 am | | Reply

    I appreciate your publishing this note from Lois, and I am hopeful that this is, in the ADA’s words, a first step, but like many PWD’s, I think that will only be proven with time. Over the years, I have seen many organizations give a good presentation or appear to be getting it, only to see them revert back to their well-established ways shortly after what appeared to be a moment of progress. Having said that, I believe that some important contacts have been established, and if the organization is serious, we can expect to see an ongoing dialog with them!

  3. Crystal
    Crystal July 7, 2010 at 11:57 am | | Reply

    Thanks, Lois!

    We hope so too, sincerely.

    Thanks for posting this Amy.

  4. Rachel
    Rachel July 7, 2010 at 12:19 pm | | Reply

    Thank you for hosting this guest post, Amy.

    Lois, I hope the ADA is indeed sincere in the desire to improve its image with diabetes patients.

  5. Pieces of My Life
    Pieces of My Life July 7, 2010 at 12:40 pm | | Reply

    I seriously have gotten a sour taste in my mouth when anyone mentions the ADA, which is unfortunate. But I know there are people in the organization who really do want to help, despite the fact that as a whole they seem disconnected, especially from the t1 community.

    I always donate part of the proceeds from my books to a diabetes charity (JDRF for the first book, DRI for the second), and was polling people on who the money should go to for book 3. Nobody mentioned ADA–In fact a couple of people told me they’d recommend anybody EXCEPT FOR the ADA. People only have a limited amount of money to donate for diabetes, and as patients I think we want most of that money going towards research. I really see almost none of the ADA funding going towards the things we care most about at this point, but I hope the conversation last week has got them thinking…(I’m somewhat doubtful, but I do still hope…)

  6. Chris Stocker
    Chris Stocker July 7, 2010 at 12:48 pm | | Reply

    I love the comments that she is making here and it all sounds wonderful. Let’s hope that they actually act upon these things and start getting things done and turn around the reputation of their organization. Staying more in touch with the community is the best way for this to happen I believe.

  7. Melitta
    Melitta July 7, 2010 at 1:07 pm | | Reply

    I would agree that Lois’s comments are headed in the right direction, but ADA has some serious work to do to improve. ADA promotes a lot of wrong information about adult-onset Type 1 diabetes, and the outcome of their misinformation campaign is that people with adult onset autoimmune diabetes typically get misdiagnosed as having Type 2 diabetes, a completely different disease. I have had people from ADA, recently, tell me that it didn’t matter if a person with Type 1 was treated as if he/she had Type 2. Also, that adult onset Type 1 is rare (when it is more common than childhood onset Type 1). ADA has a lot of work to do to actually be an advocate organization for Type 1s, as oppposed to doing them harm.

  8. Melitta
    Melitta July 7, 2010 at 2:16 pm | | Reply

    Lois’s comments are good, and I hope that ADA truly is willing to listen to constructive criticism. I would go further than Amy’s comment that ADA is very disconnected from adults with Type 1 diabetes–I would say that ADA works against and harms adults with Type 1. ADA says that adult onset Type 1 is “rare” when in fact it is more common than childhood onset Type 1. ADA includes those with LADA (latent autoimmune diabetes in adults, or adult-onset Type 1) in statistics for Type 2 diabetes. Recently, someone from ADA told me that it is acceptable for a person with adult-onset Type 1 to be treated as if they had Type 2 diabetes (which is an altogether different disease). All this wrong information promoted by ADA means that people like Amy and me (those of us with adult-onset Type 1) are routinely misdiagnosed as having Type 2 diabetes and given incorrect treatment.

  9. Bob Fenton
    Bob Fenton July 7, 2010 at 5:15 pm | | Reply

    Amy, Thanks for getting the view from the other side. While actions always speak louder than words, this is a step in the right direction, whether a giant step – only time will tell.

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  11. Lyrehca
    Lyrehca July 7, 2010 at 8:40 pm | | Reply

    Good to read the response from the other side, as the above poster mentioned. Any chance that the AADE will respond as well, or was that interaction so much of a disconnect that a response wouldn’t be valid? (Have read how it wasn’t productive in several blog posts).

  12. Michael Hoskins
    Michael Hoskins July 8, 2010 at 12:32 am | | Reply

    Thank you so much for that post, Amy! And Lois, for the feedback on the ADA side! It was truly great hearing what the ADA had to say and how willing they were to listen and recognize some areas where they weren’t up to par. One of the things that was the most interesting to me was how the ADA and JDRF are really having a more active and continued dialogue than in the past, and that’ s encouraging to me. Hope the dialogue and listening continues from both the ADA and our patient community as time goes on!

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  15. Kristin
    Kristin July 9, 2010 at 1:02 pm | | Reply

    I am an adult with type 1 who also feels very little connection to ADA. The slogan “Stop Diabetes” is a good example of why I feel disconnected. I guess I focus on “Managing Diabetes”. I guess that the point is to focus on a cure, which of course we would all like, but somehow to me “Stop Diabetes” makes it sound like it is already curable or preventable, which I do not believe to be true, especially for type 1.

    One thing that I do appreciate about ADA is the legal representation and advice that they provide for people with diabetes.

    I hope that through increased communication, the organization will move closer to patients.

  16. Dan Patrick
    Dan Patrick July 9, 2010 at 6:31 pm | | Reply

    Hi Amy,
    I realize that you have spoken and written about the failure to address the adult type 1′s. Children are cute, however, it is a challenge to manage our condition and live a productive life. Point of fact, Lilly and Joslin have award recognitions for 25 and 50 year life markers. Both have recently added a 75 year award. This group is the true poster people for the ADA. Hope you live to receive a 75 year award! …. PS Do you have a “copy” of your original diagnosis to submit?
    It is the sharing, caring, research and always attempting to do a better job and have the best numbers possible which helps all of us.
    Dan

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  18. Scott K. Johnson
    Scott K. Johnson July 28, 2010 at 8:31 pm | | Reply

    The discussion at the summit was my second recent interaction with the ADA (the first was my Red Rider experience for the Tour de Cure).

    Both of these recent interactions have been positive for me, and it is helping me open my mind a bit more to the ADA as a whole.

    Time will tell where things go from here, but I’m going to try my best to stay positive, offer constructive feedback where appropriate, and be open to helping them become the organization we would like them to be.

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