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One Voice.

[Disclosures first:  I attended the Partners in Patient Health Summit yesterday in Washington, DC, which was an event sponsored by Sanofi.  They paid my travel and lodging.  I paid attention and generated my own opinions.  Now you know.]

At the Partners in Patient Health Summit yesterday, there was a spirited discussion about the power, and then the powerlessness, of the diabetes community.  John Schall, CEO of Caregiver Action Network, told the group (and I’m paraphrasing) that he was disappointed to see a community with so many people in it, yet so powerless.

This statement stuck with me because it forced me to step outside of the diabetes comfort bubble, and as the conversation moved forward, I wondered why we, as the diabetes community, have such a hard time coming to consensus on things. Why are we so disjointed, at times, in this space?  Diabetes, in my case, is a disease that will span decades and has been present for the vast majority of my life, causing relevant issues to shift with time.  When I was diagnosed at the age of seven, my parents needed support in taking care of me and my main priority was getting to soccer practice, or turning in my homework.  As I’ve grown older, priorities changed to include staying healthy to take the best care of my daughter.  “What matters most” is redefined every few years, but at the core, what matters most truly is my health.

Later in the afternoon of the summit, advocates from other health conditions took the stage to talk about what has worked, advocacy-wise, in their community and where they’ve drawn success from.  A common message from the other advocates was that consistent messaging matters, and to be heard, we have to speak with “one voice” as much as possible.

Can we speak with one voice?  Can the diabetes community come to agreement on two or three issues that we can rally behind with passion and conviction, raising awareness and our voices?

What can we, as a group rally behind? Where are our common goals? And how, for crying out loud, can we bring them to fruition?

(And to check out some of the discussion from the Summit on Twitter, take a look at the #diabetesPIPH hashtag.)

20 Comments Post a comment
  1. Tim Steinert #

    Great. Another person asking us why we don’t have our stuff together. Did they ask why the other passengers of the Titanic couldn’t save Leo DiCaprio from his watery grave? It reminds me of the song that Elvis Costello sang a lot in the early eighties, “You’re Pouring Water On a Drowning Man.” Just because I have to deal with this nonsense (diabetes) daily doesn’t mean I have the energy to do much else than keep my metaphorical head above water.

    Did he also ask why worldwide Christians don’t speak with one voice?

    01/29/15; 10:38 am
    • I was conflicted about the whole discussion, but there is a point to be ferreted out, and that’s the fact that loud, unified voices get more shit done. Doesn’t mean we ALL have to raise a ruckus at once. I’m thinking Spare a Rose is a nice place to get loud.

      And yes, I brought that point up, about how sometimes advocacy is tempered by the daily disease management itself. I know that’s true for me.

      Also, poor Leo.

      01/29/15; 10:55 am
      • Tim Steinert #

        Screw Leo. I’m trying to stay on top of this piece of driftwood.

        01/29/15; 11:34 am
  2. I completely agree – I think the trouble is that people have so many different goals, based on personal experience. No one D life is the same! This can be due to circumstance around them (say where they live or situation) but also how they manage their actual diabetes! So pump vs injections, then there’s also the different motives of the T1 and T2 communities to factor in… SO much!

    I’m not sure what is the best way to go around uniting people, but I think campaigns can work – a high-profile Dblogger (like yourself for instance) raising an issue that people can rally behind! xxx

    01/29/15; 1:50 pm
  3. Martha #

    I think to some extent the general public is both bored and confused by diabetes. First off, there’s the whole Type 1/Type 2 thing. And a disease with numbers? Yawn. Then there is the fact that diabetics just look like plain folks and blend in to their surroundings. and there is something about living with diabetes that no non-diiabetic can REALLY understand, I believe. I’m sure this is true for other diseases as well but the kick your butt out of the blue aspect of hypo- or hyperglycemia, the potential (but not certainty) of complications, the constant mental effort involved, etc. I believe makes diabetes too hard for outsiders to understand. Very few people in my life understand it, that’s for sure, even my own mother and husband to some extent. I think that somehow the diabetes community (just like individual diabetics) needs to balance the “you can do it” rah-rah talk with the “this sucks the big one and may also kill you and something needs to be done” talk to create more of a sense of urgency. The lack of funding for research is appalling given the toll diabetes takes. If that’s not a reason to work on a united message I don’t know what is. We probably shouldn’t rest until we have the same level of support and awarenss as breast cancer receives.

    01/29/15; 2:50 pm
  4. Thanks for including my Tweet. I’ve been mulling this over since yesterday and the more I think about it, the more I am certain that the most important part of my Tweet was the second hashtag. #justmyopinion Because we all have our own opinions. We all have our own passions. Maybe our voice shouldn’t be ONE voice. I’d like to see us be fragmented together, so to speak. I get that everyone focusing on one thing would be louder and get more done, but I also think we each need to focus together on which ever issue (or issues) speaks to our heart. And I doubt that could ever be boiled down to just one. So less fragmented, yes. But focus on one thing? I’m not so sure.

    Also, I realize those of us following along on Twitter may have missed some things that were said. But I can’t help feeling like in addition to being judged from the outside on my diabetes management, I’m now also being judged from the outside on my diabetes advocacy. That kind of stinks.

    01/29/15; 3:05 pm
    • Karen, you hit the nail on the head for me, big time. I did feel judged on all sides, but your idea of “fragmented together” sound perfect to me.

      01/29/15; 11:22 pm
  5. Just from the comments so far, I’m seeing more than One Voice. Frankly, I don’t care what’s been accomplished to this point, though it’s probably more than Mr. Schall believes. I care about what we CAN accomplish, and I don’t care if it’s with one voice or ten thousand voices.

    Is it me, or am I seeing more generalities given as advice lately, rather than actual action steps? We need to speak with one voice…. great. How do we do that, what do we rally around, what are our next steps after our initial goals are achieved, how do we stay on message when conflicts occur? Maybe it’s because I’m a man, but I need concrete action steps. I need a plan. Then I can speak with One Voice all day.

    01/29/15; 4:38 pm
    • I agree, and Mr. Schall doesn’t dictate what we do as a community. But I do like the idea of rallying in big numbers behind messages, and I’m still going to search for things that we, as a group, can feel good about raising awareness of and for.

      01/29/15; 11:20 pm
  6. Thanks for including that tweet from my end, Kerri.

    OK, I have a rant.

    Speaking with one voice… yes, it depends on the issue. One of the reasons I’m so big on #SpareARose is that it’s simple and very tangible, and to me it seems like something that doesn’t seem to bring division because we can all agree saving kids lives through insulin access is pretty darn important. Not everyone agrees on cure research v. tech, or on insurance coverage policies and politics, or even how treatments and medications are used. And of course you’ve got the whole T1/T2 thing, which will never go away despite the need for it to vanish. To say we aren’t united, or have one voice, or haven’t hit “movement” status as it was stated during MasterLab during last summer — misses the point. We ARE united when it comes to making a difference, telling stories whatever they may be, SparingARose, getting the FDA’s attention so that it listens to us, and just working to make Pharma aware that the patient voice exists. Those have happened, and are evidence that in times that it’s counted, our D-Community has stepped up. Hell, we helped get a young girl named the People’s Choice for Miss America because we raised our voices in unison. These are counter-points to Mr. Schall’s claim that we are “disappointing.” Sure, maybe we don’t have one voice on 100% everything relating to diabetes, but that’s an impossible high standard that we’ll never be able to reach. And I wouldn’t want us to for everything, because Your Diabetes Does Vary and opinions differ. If we get to a point where a minority is speaking for and making decisions for a majority, then we’ve entered into dangerous territory.

    01/29/15; 5:21 pm
  7. Just chiming in to say these comments, especially Mike’s, come much closer to what I was thinking when I read your tweets on this the other day. I was pretty riled up. Diabetes is complicated and there a reason YDMV caught on. I also like to say there are as many ways to parent a child with diabetes as there are ways to parent. We are a big, diverse community. But we can and do come together as Mike indicates. Thanks, Kerri, for continuing to bring these issues and statements to our attention.

    01/29/15; 10:17 pm
  8. Considering that we’re dealing with a chronic disease that lasts a lifetime, I don’t agree that all of our focus should be narrowed to one message. When I was first diagnosed in 1955, the goal was to quickly find a cure so I could return to being a “normal” 8 year old.
    Now, 60 years later, the importance of making all the recent management tech tools (insulin pumps, CGM, non invasive glucose meters +) accessible thru Medicare is the most important.
    To focus on the bigger picture, prevention of the disease is the most important. Does that mean that our energy should be spent on mandatory genetic counseling and stem cell research?

    01/29/15; 10:58 pm
  9. I feel like we could all agree that we want people with diabetes to live healthy, happy, long lives, but there are like 7 billion variables in there, not to mention the people who will say a cure is the most important goal, or a closed-loop system is a goal, or being able to do things to manage diabetes without needles is a goal…

    The whole thing makes my head spin, and that’s not hypoglycemia I’m feeling.

    01/30/15; 2:13 am
  10. Sandra McCarthy #

    I think we ask the right questions and fight everyday… What we do is continue what we ARE doing… WE have come so far!! STOP and think really think about the last 10- 15 yrs …. really most of what happens takes a Voice that speaks for us… Like to name a few you Kerri, Jeff, or Wes, , and even myself . Now for me I am a concentrated drop in the awareness pool and its rippling … cause I don’t know who will take away something and tell or share with the next person…. ect. We do what are life, time and passion let’s us do. Some of us bless us with a full time career of advocating and YOU are all doing a great job. We are dealing with a multifaceted , complex, messy,costly, chronic, life long, suckiest, condition on the planet, and we are mentioned everyday on the news, internet, radio, if YOUR not Hearing our ROAR your NOT LISTENING!

    01/30/15; 7:39 am
  11. Brenda #

    Interesting post and comments.

    I could get behind two things:
    <Better training of PCP to treat both Type 1 & 2
    <Medicare reimbursement for all things needed to treat both T1 & 2

    Both would have a tremendous impact and Yay! we are all finally living long enough to participate in Medicare!!

    01/30/15; 4:07 pm
    • Sandra McCarthy #

      YES Brenda I like those issues too! 🙂 The whole DEX and the FDA stuff reminds be of the DOC sending letters and testimony for the Glucowatch not that it worked but it taught us alot about how to be heard. I also know anytime the media get’s sends out misinformation we hear about it pretty fast and enlighten them. I would love to see Medical professionals more up to date with diabetes self management and the tools we use.

      02/2/15; 12:27 pm
  12. Powerless?! Is there another DOC that I don’t know about because frankly, I don’t know what he’s talking about.

    Okay, so we haven’t made any groundbreaking waves, but we certainly have consensus on some issues. As Mike mentioned, there’s the Spare a Rose campaign which has brought thousands of us together to raise thousands more dollars.

    I’m also thinking of the Strip Safely campaign and the fact that we’ve actually lobbied directly in front of the FDA for why accuracy is important and this issue really is getting looked at more closely.

    I’m thinking of the advocacy work done for the Artificial Pancreas, which most people recognize as being important.

    I’m thinking of the Diabetes Mine Innovation Summit, which has brought patient voices and industry minds together to make some meaningful change in how our devices are created.

    I’m thinking about more patient involvement in the industry conferences in general.

    I think asking the DOC to have “one voice” is like having Americans have “one voice.” We don’t have one voice — we have a lot of voices because there are a lot of issues and each person is going to rank those issues differently. But it’s not like we don’t get anything done just because we’re working on a lot of important things. I feel a little indignant thinking about this because I think we’ve done a lot! ::stomps foot:: Sure, we can always do more, but I’ll be damned if someone marches into our town and tells us we’re good-for-nothings. Because if nothing else, it’s not in the least bit true! Hmph!

    01/31/15; 10:36 pm
  13. We are a large community, but a diverse one as well. I think the T1/T2 side poses a challenge because they are quite different but lumped together by the general public. If we unite for cure research, what cure is it? I think the cure for T1 and T2 will be different cures. Then there is the stigma surrounding it, and the invisible side of it. I’m not sure what communities he is comparing us to, but outside of cancer or autism I don’t see a whole lot of health communities getting a ton of coverage either. I agree with everyone else that there is such a range of things that effect us all and everyone is passionate about a different one. Sure, I want a cure and to help get insulin to those who don’t have access, but I also care a lot emotional support and connecting people with diabetes. I find myself spread thin between things I want to support so its hard to get a huge group of people behind one cause too.

    02/3/15; 1:20 am
  14. Hi Kerri,

    As you know, I attended the event as well. And I think there was a larger message here, beyond us individual advocates in the DOC.

    What I heard was a challenge to the big national advocacy orgs — ADA, JDRF, AADE, AACE, etc. — to collaborate better for bigger impact. They were specifically called out to “get over” egos and competition for funds, and start working together for the good of patients.

    Here’s my post on all that:

    Sanofi’s Diabetes Advocacy Summit: Coordination Needed

    Great seeing you, btw! 🙂

    02/4/15; 12:24 pm
  15. Melinda Rose #

    I enjoyed reading the comments. Fragmented? Well, yes. After all, we are a family! It is good to have this dialogue and I love being part of what all of you have to say. I would say that many advocacy groups HAVE come together to get the Special Diabetes Program renewed at $150 Million for research dollars at the NIH. That is not a small thing. Thanks to you for ALL you do for our loved ones. Our foxhole has no better warriors!

    02/5/15; 9:13 am

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