Tuesday, August 7, 2012

Bridging The Gap

Kerri Sparling wrote an amazing post yesterday called “Expectations,” about Social Media Events and I have to say, she really hit the nail on the head on every level possible. 

If you haven’t read  it- DO IT NOW, I’ll wait. 

I love attending these conferences, I love seeing my DOC friends in real life and I love learning and engaging when it comes to Diabetes,
Now these conferences usually occur at a nice hotel - And I appreciate that. 
Mostly because I’m physically exhausted after getting up at 4 a.m. to get to the airport for my 7 a.m flight to attend the conference.  
And by time the sessions and conferences are done - I’m physically and mentally drained, so having a place with a comfortable bed and good water pressure in the shower is a plus. 
And usually I get home from the airport at 8:30 or 9:30 at night from one of these conferences  - And have to be at work at 8:30 a.m. the next morning.
But another a reason I appreciate a good hotel is because I’m freakishly afraid of bedbugs. 
 I frequent BedBugRegistry.com whenever I travel regardless of whether it’s business or pleasure.
Bed Bugs freak me out. 
With that being said, I do I understand this post by Kim.

The conferences usually start at 7 a.m. and they go all day and if we’re lucky we make it back to the hotel by 5 pm. 
And there’s a lot of information being thrown out at us. 
And not just about products - but about diabetes and people living the diabetes life. Some of the discussions get heated, others are technical and scientific in nature and hard to follow let alone tweet or write about. 
We talked a lot about diabetes technology and the FDA at this Roche and we took a tour of the facility that makes their test strips and test their Nano out - A lot goes into the diabetes hardware we use. 

Sometimes the speakers at the conference make me cry, Josh Bleill was one of those speakers. 

Sara Nics wrote a beautiful post about hearing Josh speak, you can find that post, HERE. Go ahead and read it, I’ll wait. 

When Josh spoke to us I was physically moved to tears - so was everyone else in the room.
 I was inspired to continue to act and be and do. And I was reminded how lucky and blessed I was and am on so many levels. I am lucky to have my limbs, I am lucky to have my pancreas - even if it’s broken, and I was very lucky to be sitting in a room filled with members of the DOC when so many others were not. 
And I realize that fact every time I attend one of these conferences. 

We also heard from Steve Richert  - A mountain climber /outdoor adventurer living with type 1 Diabetes. Steve launched his Living Vertical: Project 365. A project where he climbs everyday for a year. Diabetes is Steve’s mountain (ours too if you really think about it. And just because a mountain is high and a challenge - It doesn’t mean we can’t climb it! He’s sponsored by Accu-Chek - And if you go to StevesMoutain.com and “like ” his video on You Tube, Roche will donate up to $15,000 towards Steve’s cause,
In my eyes these conferences are a social media experiment that is going in the right direction, suffer from growing pains none the less.
Patients voices are being heard by Pharma and there is a discussion going on. 
Granted, Pharma gets a lot by way of marketing,etc.  - And we all know that. 
But because of what’s going on in our community, Pharma is engaging with other patient communities. I know that patient assistance programs have been created for people with diabetes and I also know many need to be created  - not just talked about. 

But with that being said, I agree with Kerri  I do think that we have hit a point where we do need to turn our thoughts into actions - hence the whole “growing pains” reference.  
I want to see patients with diabetes go to Washington and talk to the FDA face to face re: the slow as molasses screening process it takes to get new diabetes products/ meds on the market. 
I want patient support groups in IRL (in real life) to be available to everyone living with diabetes.
 These support groups costs money for staff and locations (at least that’s why the pump support group at the teaching hospital where my Endo is based out of was cancelled) and I hope Pharma can help make that happen. 
At one conference I learned that girls in India with diabetes are put in orphanages or left to die because they aren’t considered important enough to save - That fact haunts me every day. 
I want those girls saved. I want those little girls adopted. I want call one of those little daughter. 
I’d love an adoption program to be set up for people with diabetes to adopt children with diabetes from other countries who are considered unadoptable because of their broken pancreases. 
I want better prices for those of us with insurance and for those of us without - And I have no problem telling Pharma that face to face - And I have. 
I want Pharma to help make my pre -existing condition a none issue when it comes to insurance. 
I want to be able to help any reader who asks for help re: diabetes supplies to get that help. 
I want diabetes connections to be made, big and small and both in real life and on-line. 
I want options to treat my disease, better insurance co-pays for the medical necessities like insulin, insulin pumps & test strips that I require to live.  

And I want a cure.  

I would love that by the 5th Anniversary of the Roche New Media Summit the old and new patient voices continue to be heard in Diabetes and the Diabetes On-Line Community. 
But with that being said, I want conversations that we’ve had to become actions. 
I want us to actively bridge those gaps that exist instead of just talking about it. 
And it is my hope that action focused conversations at these conferences push through very real outcomes  for people living with diabetes. 
And THAT actions becomes the norm, not the exception.

Bridging The Gap


Unknown said...

You have every right to freak out over bedbugs! Ugh, ask me sometime. Or Allison. Thankfully the hotel I stayed at over the weekend on my vacation has had no incidents on the bedbug registry. :)

I'm always glad to have friends at the social media summits, even though I am also a bit jealous that I've never been invited. I feel like the DOC is in good hands with most of these attendees.

Nicté said...

Good god, Im stuck on the fact that girls are left to die in India. This isn't the first time I've read something like that but my stomach keeps turning everytime I read.
How can it be that your parents give up on you because of your diabetes! Like it's our freaking fault that our pancreas gave up godamit

I love that so many of you get to go to this kind of events, in Mexico bloggers at least, from I can see, are not taken into account at all.
Mexico has a super high rate and rising,of people diagnosed with diabetes and not many are doing squat to find a cure.

Anonymous said...

I would like to see funding for nutritional education here in our country. How to prepare healthy meals, how to choose optimal nutrition. Something along the lines of Jamie Oliver's "Food Revolution" series. He went into LA public schools to educate on healthy alternatives. He taught students how to be "chefs" to cook healthy meals for themselves & their families. Educational programs to empower families. Type 1, type 2, everyone. He even opened centers where the community could take classes to learn to cook. I would love to see that here.