9 Responses

  1. tmana
    tmana June 14, 2012 at 5:40 am | | Reply

    Hmm. I’d've thought you’d had experience covering trade shows, even if not for the diabetes circuit. Lots of running around, lots of carrying swag around, lots of business-card swapping, and no time to eat unless you’re scheduled for a session with a meal-time speaker just before the conference starts, or just after it ends. It doesn’t matter what the industry, if it’s a good trade show, or political convention, or science-fiction/fantasy/comics/gaming convention, or ADA Expo, the routine is the same. (OK, most SFF con-goers don’t have business cards — but they do have hall costumes and after-hours room parties.)

    That said, I’m wondering if one of the sorts of outreach we need to consider is the DOC reaching out to HCPs who aren’t already onboard with the peer support and/via social media program. Most of the time, these won’t be our personal healthcare providers — though maybe, just maybe, we could get them onboard with what for them would be peer outreach?

  2. Doug
    Doug June 14, 2012 at 6:30 am | | Reply

    Mike
    Great feedback on the conference – Keep in mind that the VAST majority of diabetes patients in the Drs minds are NON COMPLIANT. in their mind the reason for bad outcomes is non compliance, the reason they feel the need to hover is an attempt to fix that – its safe to assume that few if any of the members of the DOC that were there fall in that category. In other words – they arent worried about reaching you – you already get it – and you are the exception. They are trying to reach the average non compliant type 2 that makes up 90% of the practice.

    Ive always called the A1c test a liars test. Its MAIN purpose is to keep you from getting away with cooking your log books… And its a statistic that is easy to study.
    Again its popularity is due to the NON compliant majority of patients.

    Its unfortunate that so many in the field have no clue what they are talking about, whether they be Drs or reporters or sales reps. Hopefully the online community can help reach some of them in some way

    Doug

  3. John
    John June 14, 2012 at 7:34 am | | Reply

    And that’s the problem! It all sounds really cool but at the sametime it’s not at the bedside. I get so spooled up because there is nothing the doctors or researchers can offer us to make this illness better. Their hands are tied to sub-q injections, pumps and multiple finger sticks per day. There are no other options – outside of experimental means. A pancreas transplant? Maybe, but not if you’re a ‘healthy’ diabetic.

    After 30 years of going to the Endo and asking for any new options to treat my Type 1 and being told NO (outside of the Pump), I don’t believe there to be a disconnect but a feeling of helplessness.

    It’s nice to read what I have always believed that these types of conferences are a waste of time. I know you indicate that the key benefit is the networking and relationships that the researchers can make but how much of that has translated to anything at the bedside? I believe none. Let’s remember, they live in an area of confidentiality agreements and first to market wins.

    Was there anything presented that would lead you to believe that we will have a non-invasive ‘TREATMENT’ for T1 within the next 3 to 5 years?

  4. Kristin W
    Kristin W June 14, 2012 at 7:51 am | | Reply

    Being a PWD and also a fomer employee (and conference-worker with sore feet) of a few diabetes companies, I have to say that the key is that the information presented at these shows is WAY early in the pipeline sometimes. Meaning, it is foundational information from which drugs and devices and programs will be developed. And that is the part of diabetes that scientists work on – stuff in the lab. So, it makes SENSE that it is not yet “translated” into PWD-friendly consumption. I mean, if we are not trained scientists, we wouldn’t understand it, anyway, and who really needs to know exactly, biochemically, how a drug-in-development works. Not us! We need to know THAT it works, and how it will affect us individually, and how to take it. That stuff comes WAY after the info presented in these scientific sessions, as it should.

    I agree that most of the trade show floors are circus-like, carnival atmospheres with companies vying for HCPs’ attention with gimmicks and treats. And maybe nothing really new was there this year. But the “new” comes from the science – the stuff that we DON’T understand (unless we are highly trained clinicians or researchers) and really don’t care about until it DOES result in something that impacts our lives, right??

  5. Leighann of D-Mom Blog
    Leighann of D-Mom Blog June 14, 2012 at 8:31 am | | Reply

    Wow, I have never, ever come across the term normoglycemia in all my years (okay, only four years) of dealing with and reading about diabetes. But if M-W says it’s a word, by golly I’m going to start using it, lol!

    At the upcoming Friends For Life conference I’ll be on both sides of the coin: a conference attendee, but also at a booth as a “patient advocate family” and handing out copies of my book.

  6. allison
    allison June 14, 2012 at 10:37 am | | Reply

    I honestly do not see the problem with using the term “diabetic.” I’ve had type 1 for 16 of my 24 years and have always told people I’m diabetic. Why do people feel like they have to use terms like “PWD?” Is it offensive to call yourselves “diabetic?”
    Please, please enlighten me! Seriously!

  7. Kathy
    Kathy June 14, 2012 at 2:46 pm | | Reply

    “PWDs aren’t stats, slides or textbook scenarios. We are people, with lives that are complicated by many more things than just diabetes.” Perfectly stated, Mike. Nice write up.

  8. Neesha
    Neesha June 15, 2012 at 8:37 am | | Reply

    Mike,
    I enjoyed reading your article about the ADA. I was there too, and can see exactly what you mean!

    So, connect the dots for me. What would you like to see happen? How do you envision the science being translated into real-life care? I am in a position of helping things happen, at least on a smaller scale…and I’d love to hear back from you!

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