Wednesday, July 6, 2011

Outrage Makes a Difference

In the couple weeks since the third Roche Social Media Summit in San Diego, I've been wearing the blue bracelet that say Act On Diabetes NOW. These were passed out by the International Diabetes Federation, and I've been wearing it to work and around generally to keep that whole aspect of the summit fresh on my mind and as a reminder that it's time to make a difference. This has been a conversation-starter with some people, but mostly the bracelet has helped me keep an important message in my heart from slipping away from the mind.

Not that it'd be easy to forget the IDF presentations at the recent summit. For me, one of the most moving aspects of the whole experience was the dinner-time presentation by IDF president Jean Claude Mbanya.

He spoke passionately about the outrage he has on the fact that so many people and children die worldwide from diabetes, simply because they can't get access to insulin. As a result, people die simply because of where they're born. That's NOT how it should be, some 90 years after insulin was first made. 

The IDF is trying to create global awareness about this outrage and get more attention from world leaders, including the United States and President Barack Obama. 

Before the summit, I was generally aware of the IDF and what it did. Generally speaking. I knew of it's efforts in establishing World Diabetes Day and what that is all about, but mostly I knew little about what else the organization did and those behind the scenes. No relationship existed, and despite my support of WDD and IDF generally. There wasn't the same kind of familiarity as I have with groups such as the JDRF or American Diabetes Association that has a real tangible message and impact here in the U.S. 

Fellow D-Advocate Scott Johnson said it best at the summit, during a presentation by the IDF communications chief Isabella Platon earlier that day: The organization's message doesn't resonate with us, and we feel very disconnected from what it stands for. There is no relationship and we haven't seen that interaction the same as others have demonstrated, and as a result we haven't had as much motivation to advocate for the IDF.

Now, it's about US. But then again, it is. WE are not only diabetics, but we're trying to help spread the message and share stories and that's what the IDF wants us all to do. The afternoon presentation was tough because those at the summit grilled and questioned the organization for not working to establish a two-way relationship with us, but rather just occassionally sending us press releases and expecting us to be outraged and then to write about that. I'm sorry, but if we aren't connected and we have all these other personal things to blog about while dealing with our own lives and D-Management, trying to force teeth isn't as high a priority for me.

We need to do better, but so does the IDF in working with us to help spread the message. It's the line from Jerry MacGuire: "Help me, help you." That's the point.

As said earlier, the afternoon discussion attitude melted away with the evening speech. It's more clear now that we are moving in the direction of establishing a better relationship that can truly make a difference for so many people.

Generally, the IDF asked for the Diabetes Online Community's help in getting word word out more about the Blue Circle. So that more of the general public and diabetes community knows about what the IDF is working toward. Four million deaths occur globally each year, and the deaths and complication rates are higher in some areas simply because that insulin access is so limited. Just like a child can die in a part of Africa because he or she is born there rather than in another village in India, children and adults can die in parts of the U.S. because access to healthcare is so less available. This impacts us all, and it's an outrage.

But people and politicians aren't outraged by this right now. Unlike AIDS and other diseases that seem to have more foundational outrage and even unification worldwide and within their own communities. Diabetes does NOT have that, and that is what must change. It's not acceptable that "accidents of geography decide whether someone lives or dies from diabetes."

In September, there's the United Nations Summit on Non-Communicable Diseases (NCD) and while it focuses on the global impact of various conditions and diseases, diabetes doesn't have the kind of attention that it should based on the epidemic implications. As of now, the U.S. leadership isn't on the agenda to attend - something the IDF wants to change. We can work to make that happen, writing a letter to the White House and our elected leaders pushing for their attendance.

The new IDF campaign called "O is for Outrage" is working toward that goal, and this is specifically what we can do to help:

We are asking the U.S. President to show the world that he is committed to the prevention and control of non-communicable diseases (NCDs). This topic is the subject of the UN's second summit on global health issues [on September 19th, 2011]. Having President Obama attend will inspire other leaders to take this issue seriously because "we do not want the world to sleepwalk into a sick future that is avoidable." - (Ann Keeling, IDF CEO). 

The IDF is offering to mail a postcard to President Obama on your behalf, to ask him to attend this summit in September. You can choose from the wording suggestions offered or write your own card. They'll be mailed Aug. 31. 

I want to help make a difference. We have World Diabetes Day coming up in November, and there's things we can do to help spread D-Awareness by getting locations lit up in blue. But it goes beyond that, from the UN Summit advocacy to promoting efforts such as what's happened with the Life for a Child. Or just by watching this video, and passing it along:




We CAN make a difference. You CAN do this. So please, go ahead and do it.

4 comments:

Meri said...

Thank you for this post Michael! I will pass it on!

Wendy said...

I have been outraged about this for a long time...it's the inspiration behind this

http://www.candyheartsblog.com/p/life-for-child.html

And I hope people will support this effort as blue circles begin to take center stage.

Un-Apologetic Diabetic said...

It's heartbreaking that people are dying because they cannot get their supplies.

As a teen, I had no health insurance and buying syringes, strips and insulin at retail was quite a challenge and I did things doctors would frown upon. I was lucky though, I somehow managed.

Hope the DOC floods the office with postcards. Thanks for sharing!

Lilly said...

Great video, Michael. The boy in it breaks my heart. We are so fortunate that we live in a country where insulin is readily available. Wish that it could be that way everywhere.