Monday, July 20, 2015

The MasterLab Experience, Part Three

Okay, by now you've read part one and part two. If you haven't, go back and read them so you don't miss out on any awesome information. Part one was the extended version of what Medtronic posted to their blog. Part two was about the fun I had with my new friends outside of the sessions. What does part three have in store for you? More tidbits of what I learned while at MasterLab. Each time I review my notes and tweets, something different stands out to me. 

If you haven't gathered by now, MasterLab is an incredible event focused on diabetes advocacy...how to advocate, how to make your advocacy impactful, why you should advocate, etc. The day and a half of MasterLab was jam packed with sessions. Take a look at agenda here. There were participants from five countries at MasterLab. Impressive. 


Tom Boyer mentioned we need to find more of our passion to be effective. We also need to work all together as one diabetic community to be the most effective. In the weeks before MasterLab, this was a common occurring thought in my mind, particularly because of Crossfit's stupidity. I witness on social media people with diabetes shaming/attacking others with a type of diabetes different from their own. This really needs to stop. When everything boils down to the simplest thought, it is the fact we all have diabetes, no matter the type. No one wants to be shamed/blamed and no one should. 

I was fascinated to hear Boyer speak about working with Clinton and Gingrich to make changes. (***Sidenote...I kind of want to be Tom Boyer and do what he does. That is PR in a way, yes? Someone make this happen por favor). There were two things he shared that gave me a moment of realistic fear:
  1. The average cost for a person with diabetes, no matter the type of diabetes, is $15,000 per year. Following MasterLab, Boyer shared the link to the study with me. I find it interesting the study was from 2013 which means the cost has probably only gone up rather than down; and 
  2. Boyer is also a person with type 1 diabetes and he shared a personal story. After he used his insulin pump for 15 years, his health insurance decided he no longer needed the insulin pump. It took him five appeals to get the insurance company to cover his pump again. My pump has been instrumental in me finally achieving success with my health. I haven't felt so healthy in so many years, decades really. I'm terrified of what happened to Boyer happening to me. 
Listening to Stacey Simms speak about working on the media reminded me of being a college student. I enjoyed listening to her because she is a Twitter friend. One thing she said I must share: 
As advocates, you may not always have success. It is okay. Do not stop. Do not give up! 
Marina Tsaplina reminded us there is no *just* our story. All of our stories are connected to the stories of others. Also, advocacy cannot happen if we aren't present. If we just hangout on the sidelines, nothing is going to happen. 

Amy O'Connor hit home how once people understand the way, they will behind us. Once people understand the battle of diabetes, even just once aspect, they will be more likely to be behind us and support us in our efforts. She said "By doing something, there is an element of hope." As long as we are doing something, even the smallest of things, there is the hope that something will change, and change for the better. 

My nerdy heart was thrilled with Thomas Lee's presentation about analytics. To summarize, I'm a social media rockstar in the world of diabetes but I can be better and do more. Obviously. 

Emily Coles was fantastic and I was so mesmerized, I neglected to take notes. My one note was how if we don't take care of ourselves, we can't advocate to the best of our ability.
I fell asleep during Melissa Schooley's session. JUST KIDDING. She is from Medtronic. If I hadn't paid attention, I think a lecture would have been in my near future. And they probably would have deprived me of Diet Coke. Melissa spoke about advocacy on the national level with Congress. MasterLab really hit home what a problem it is that Medicaid/Medicare does not cover continuous glucose monitors. A lot of advocates are working hard to change this but we all need to jump in and help. It is a battle we must fight and get CGMs covered. 

Like Melissa, Andrew Zebrak spoke about advocacy but focused on the state levels. If you saw my tweets, I called out Nebraska because Nebraska's unicameral is doing nothing in regards to creating a Diabetes Action Plan. I'm not pleased at all with my beloved home state. 

Kim Vlasnik, another Twitter friend who hails from Nebraska, shared about the project she started. It is You Can Do This Project. Go check it out. It is powerful. 

Dr. Kenneth Moritsugu closed out day one by lighting a fire underneath all of our behinds. No longer can we play spectator. This goes with my thinking of if I don't advocate or fight for things which impact me, who will? In a way, I can't depend on others because really, only I am responsible for myself. Dr. Moritsugu spoke of how it is imperative we find our voices, both individually and collectively. Again, this goes back to the question of just how darn powerful can the diabetes community be if we all fight together instead of as separate entities. 

Day two was all about focus groups. The first was about sustaining your advocacy. I attended thinking it would be about making sure you don't get worn out because as Melissa said, advocacy is a marathon, not a sprint. Rather the focus group discussed sustaining advocacy through creating your own nonprofits and organizations. It was interesting but not quite relatable to me although I was impressed with all the hands raised when they asked who there had a nonprofit/organization. 

The second focus group was about the Diabetes PAC (Patient Advocacy Coalition). Wow! I left the focus group energized and believing in my ability to be a better advocate. They asked us to share why we advocate in five words. My reason? Make diabetes voices louder/stronger. The louder and stronger we are, the more likely change will happen. Diabetes PAC makes it extremely easy for you to contact your elected  officials. Our officials want to hear from us. The more they hear, the more likely they are to act. At times during MasterLab, I was saddened to hear how much of a struggle people have to get the basic supplies they need such as test strips and insulin to care for their diabetes and stay alive. I'm not naive. I know people struggle but somehow it is easier to ignore it when I just read it on social media compared to hearing it in a room I'm sitting in. 

MasterLab was such an incredible, empowering experience. I arrived not realizing what passion I had inside me to change the world in regards to diabetes. MasterLab truly lit the match. I'm excited to see where this takes me.

The Diabetes Hands Foundation, you know the brilliant people responsible for MasterLab, have posted the presentations online. I encourage you to take some time and watch them or at least play them in the background and listen to them. (And yes, I was sitting up front so you'll probably see my amazing curly hair). All of the speakers and sessions were amazing but I'd really encourage you to listen to Tom Boyer and Moritsugu. Also, if you want to read all of the amazing tweets that were being sent out during the event, search for #MasterLab. 


***Disclaimer: Medtronic paid for our airfare, lodging, food and MasterLab registration. All thoughts though are completely mine and Medtronic did not influence my thoughts in any way. 

2 comments:

  1. Kristin- hello, and thanks so much for your thorough coverage of MasterLab 2015! It was indeed a very powerful experience.
    I wanted to clarify something in what you wrote regarding my presentation on "Narrative Health and Social Justice":

    "Advocacy cannot happen if we aren't present. If we just hangout on the sidelines, nothing is going to happen. "

    Though this statement is certainly true, this is not quite what I meant when I used the word "presence". Specifically, I said "Agency cannot happen without us becoming present."

    This type of presence is connected to the much deeper process of an individual becoming present to themselves, present to their entire emotional realm of experience as they become fully alive, so that each of us may act ethically on behalf of the cause we advocate for. We do not make ethical decisions when we are numb, or when any part of us is numb, and thus what I had everyone repeat: "I shall not be made numb."

    So that statement in this blog post can be rewritten to say " "Ethical advocacy cannot happen if we aren't present. When we are numb, our ability to create change is greatly diminished."

    The presentation is here:
    http://www.slideshare.net/TheBetesOrg/narrative-healthsocial-justice

    Please feel free to write if you'd like to continue the conversation! marina (at) thebetes (dot) org

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    1. Re-read this and want to clarify- I don't mean that you need to rewrite any of your blog post!! Only trying to elucidate the thoughts I tried to convey. (smile)

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