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IDF: Diabetes Affects People.

IDFDuring the course of the Roche Summit, I felt very lucky.  Lucky to be part of a group that's invited to hang out in a cool city, in a fancy hotel, and to have a company willing to put up the cash for this event.  I thought about how lucky I was to live in a country where, despite our complaints about health care systems and insurance premiums, we still have access to insulin, and to resources that can help us gain access to insulin in dire circumstances.  

Actually, I felt freaking spoiled.  

I do earn my income as a writer, and I do write often for diabetes-related publications, but it's not a job.  I attend diabetes-related conferences and I speak at many health events, but it's not a job.  Diabetes is not a job.  Diabetes is a disease.  Not an industry.  As someone who lives with this disease every single solitary day, and who has no memory of life without it, I cannot it a "business."  While Pharma and device companies might want to call us "consumers" or their "client base," we're people.  People first.  And last.  And all the bits in between. And we all have the very high honor of being part of a community of passionate people who truly understand.  People who get it and know that diabetes is every day, every moment, and affects every one of us.  Which is why I know that, if any group can literally change the world, it can be us, the collective diabetes community, both online and off.

During the course of the Roche Summit, Isabella Platon from the International Diabetes Federation spoke with the group of us.  I read Scott's post on this, and I have to agree - as a group, we could have been far more receptive.  Our complaints were valid (get to know us and our community, read out blogs, reach out in a more personalized manner, etc), but these complaints would have been more appropriate if directed at a company.  Not an advocacy organization.  Not an organization aiming to provide insulin for people who, even 90 years after its discovery, still can't get their hands on a vial or a clean syringe.  I don't care if the people at the IDF know my name or have ever heard of my blog.  Their job isn't to coddle me.  Their job - goal - is to change the world for people living with diabetes on a global level.  

Jean Claude Mbanya, President of the IDF, met with our group informally during dinner, and he spoke about how diabetes affects people.  PEOPLE.  People who are born in the United States and have access to decent care, but also the people who, by chance or circumstance, do not share this same opportunity.  People. 

Diabetes affects people.

I support the vision and the mission of the IDF.  I want to do what I can to help people with diabetes survive, despite circumstance.  And I think our global community of PWD deserve as much help as we can get.  

I believe that there are more opportunities to mobilize our community and make a tangible difference.  One thing we can do, today, is to help raise the awareness of the state of diabetes to the Obama White House.  The IDF website said it best:  "We need to convince President Barack Obama to show up and represent us at the UN Summit on September 19 - 20."  And we can do that, in part, by inundating him with postcards with our request.  Visit the O is for OUTRAGE section of the IDF website to quickly and easily send your message on to President Obama

Having the power to change the world means nothing if we don't harness it.  We need to raise our voices, together.

Comments

I actually felt worse, spoiled rotten I mean, and my daily challenges seemed so trivial compared. My dx was after I had moved to the states so I have no clue the challenges diabetics face back home. The good thing about was it became an eye opener and I am doing everything in my power to support the IDF and refocus my energy towards that goal. Absolutely we can do a lot more and we should, I think its not just a want but an obligation as well...

Great post, Kerri. Thanks for sharing your thoughts on this. I echo what you said, about feeling rotten and even guilty about how much I (so many of us) have in this country, when there's so many struggling and so many who just can't get what they need to survive. But the summit was an eye-opener, indeed, and it not only nurtures the soul but also shows us what we can do individually and together, online and off, to make this a better place.

The more I read about the IDF's concern for those struggling to survive with diabetes, the more grateful I am for the pieces of plastic attached to various parts of my body...not content, but very grateful nonetheless. Thanks for this post, I keep forgetting to check out the O is for Outrage link...I'm off to do that now.

There are plenty of people right here in the U.S. living with T1D who have great difficulty accessing insulin and the basic supplies necessary to live with this disease. I personally went years without health insurance during grad school; no private plan would cover me and I was always working part-time, where health insurance was either not available or inadequate. There were times that I rationed insulin and I never tested my BG as much as I should have. Accessing free programs took a lot of time and energy (these programs were of huge value to me, but only because I had the knowledge to know how to access them).

And I am not alone. There are many, many T1D folks in the U.S. struggling. This is NOT to make light of the plight that other folks with T1D throughout the world experience, but it's not all roses here in the U.S. I feel incredibly guilty now that I have great health insurance and pretty much get whatever I need. I do my best to share leftovers with people who need them.

One thing that would be GREAT is some sort of national clearinghouse for leftovers. Most of the stuff we use each day (test strips, meters, R & N insulin, infusion set supplies) are NOT prescription items. These things can be bought over the counter. Wouldn't it be wonderful if we had ONE place where we could post something like, "Hey, I have all these infusion sets left over that I don't know. Anyone want them?" Sort of like a freecycle for D stuff. Just a thought.

I would have given anything to be there. Not just to finally meet all you guys, but to really see how this all works. I'm not kidding. I don't have a clue how all these summits & things work. Makes me feel kind of stupid. Or naive.

I'm working on my postcard & I think I'll start posting the link on Facebook to get my friends & family working on it too. :)

Thanks, Kerri!

My SIL's wedding coincided with this event so I was unable to attend. (How dare she??)

At any rate, I've written about this outrage before...it's downright heartbreaking.

It's the reason I organized the Candy Hearts Collection...and I hope you will help me help them...thank you.

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

LOVE THIS POST and agree 100%.

Great post Kerri, and thank you for helping to spread the word.

I agree that it's not all roses here in the US - in fact, Bruce, from Roche pointed out that it is not accurate to lump all of the "United States" into a big group. For example, someone born in the area where our friend Wil works faces many more challenges than most of us do.

I had never thought about it that way before.

Even with that in mind though, I've not heard much about kids, here in the US, dying because they either can't afford their insulin, or can't refrigerate their insulin, or can't travel to get their insulin, etc.

It's a disgrace that we who have so much don't know more about, and DO more to help, those dying children. We can't help everyone. It's not possible. But I know that *I* can help much more than I'm doing now.

I've already sent my postcard, and will be paying a lot more attention to the IDF and their efforts after meeting with them in person.

They need our help. And what does it cost us? A few words in a blog post? A handful of clicks on a postcard campaign? Easy stuff when you think about the impact it collectively has.

great post, thank you.

where you live should not decide
whether you live or whether you die

http://www.youtube.com/watch?v=WP-8WPuAoqA

I am getting my friends and family involved as well. Thank you for the inspiration you continue to provide me, especially when I start to fall into a hole of non-action due to busyness or even sheer laziness at times - things can't change unless we step up to try to make them change - as many times as we have to!

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