[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.
Schall just slammed our community saying we should be more powerful with the amount of PWDs in the US. Challenge accepted. #diabetespiph
— The Perfect Diabetic (@ThePerfectDBlog) January 28, 2015
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.
Talking about unifying the diabetes community into one voice. One voice? Is one voice possible? #diabetesPIPH
— Kerri / Diabetes (@sixuntilme) January 28, 2015
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?
— Karen Graffeo, PWD (@KarenBittrSweet) January 28, 2015
— Mike Hoskins (@MHoskins2179) January 28, 2015
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.)