Beyond the Ice Bucket: The Real Challenge for Diabetes Advocacy

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Beyond the Ice Bucket: The Real Challenge of Diabetes Advocacy
Photo by Jeffrey Lash

I spent the majority of this summer in the backcountry of Wyoming working on a climbing expedition with an all Type 1 diabetes team and as such, I was relatively insulated from the ALS Ice Bucket Challenge craze. When I returned to civilization I had to play catch up, mostly via Facebook detective work. What I learned from reading was this: half of all people care about advocating for causes, and the other half care so much that they hate on whatever form of advocacy is popular as a matter of principal because they want to do something that really helps the less fortunate. The takeaway is that generally, people do care, even if that care manifests itself as silly social media games or silly social media criticism and rants.

In the diabetes world, I saw numerous commentators extolling the need for a parallel ice bucket challenge to raise money for diabetes research. This made me wonder why the idea of “making a difference” is almost universally equated with fundraising for research to the exclusion of all other needs in the global diabetes community.

We care about being heard and making a difference so I want to challenge you as members of the diabetes community to look deeper and see the greater depth of need the world over, uncomfortable as it may be to do so.

I am going to assume that if you are reading this, it’s on a computer or mobile device (if it is on a mobile device then please accept my apologies for the length!) and that you, like I do, enjoy a modern lifestyle with access to the “basics” of diabetes care. To whit: I recently “downgraded” from an insulin pump to syringes and vials. I announced this change on the LivingVertical Facebook page and Twitter and people were shocked and asked why I would voluntarily relinquish years of technological advancement for no apparent reason.

The simple answer is because I like needles and vials and I don’t feel like a pump is the best delivery system for me at this time. Even as a transient climber/artist with no conventional job at the moment, I have options in my diabetes care.

I take for granted the fact that I can get up every morning and take my insulin and go on with my day. I try not to think of what my diabetes options would be if I were in Africa, for example, or parts of central and southeast Asia. It’s uncomfortable to think that over there I’d be thanking my lucky stars to have even the simplest form of insulin therapy–and that many people don’t have that necessity and die as a result.

I try not to think about that over my morning coffee because I feel guilty when I do- guilty for what I take for granted and guilty for not doing more to help.  But the point of this editorial isn’t to cultivate guilt. It’s to introduce you to the 100 Campaign, an initiative that is making a difference.

Beyond the Ice Bucket: The Real Challenge of Diabetes Advocacy
Photo by Jeffrey Lash

The 100 Campaign was founded in 2012 with the support of the International Insulin Foundation with the goal of establishing 100% worldwide access to insulin for people with diabetes by 2022. This is, of course, a monumental task–and they are taking on this mission without accepting funding from the pharmaceutical industry. The vast majority of non-profits in diabetes rely on funding from industry partners (at least in part), but the 100 Campaign is actively addressing issues within the industry itself that they believe are barring access to insulin.

The diabetes community isn’t just people you know on Facebook. It’s not just the people who comment on your blog or retweet your blood glucose updates. The diabetes community includes those people in the developing world who can’t get on social media or write a blog about their situation while kicking it at their neighborhood Starbucks. I see hundreds of people posting on behalf of funding research every week on social media–and I’m not trying to rain on that parade (or walk-a-thon)–if anything, that confirms that we as a community are caring and active. Now it’s time to paint in the corners of the big picture to include the silent, unpopular problem in the diabetes community–the lack of affordable insulin on a global scale.

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6 Comments on "Beyond the Ice Bucket: The Real Challenge for Diabetes Advocacy"

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Mitch

It’s time for T1Ds to speak out LOUDLY about pharma industry price gouging. Over the last few decades, every aspect of T1D care has seen seen triple-digit inflation. When blood glucose test strips are made by the billions, why do they cost more $1.15 each and keep rising in price? Why does insulin cost almost $200/bottle in 2014 when it cost $15 30-40 years ago?

Mitch

It’s time for T1Ds to speak out LOUDLY about pharma industry price gouging. Over the last few decades, every aspect of T1D care has seen seen triple-digit inflation. When blood glucose test strips are made by the billions, why do they cost more $1.15 each and keep rising in price? Why does insulin cost almost $200/bottle in 2014 when it cost $15 30-40 years ago?

Elizabeth Rowley

Thanks for speaking out about this. I am fighting for the same things via t1international and am a huge advocate for the 100 Campaign’s work. We really do all need to band together and make access to insulin the #1 priority of the diabetes community. It’s so painfully obvious. How can we get more people to care about this issue and to rally together to find sustainable solutions? I’m going to keep shouting about it and hopefully others will join us so that we are louder and louder. 

Elizabeth Rowley

Thanks for speaking out about this. I am fighting for the same things via t1international and am a huge advocate for the 100 Campaign’s work. We really do all need to band together and make access to insulin the #1 priority of the diabetes community. It’s so painfully obvious. How can we get more people to care about this issue and to rally together to find sustainable solutions? I’m going to keep shouting about it and hopefully others will join us so that we are louder and louder. 

Amy

I am the T1D freak, and my husband and I are devoted wall ratz and hang doggers in UT… Fun to stumble on your post! We’ll be ‘followers’ 4 sure.

Amy

I am the T1D freak, and my husband and I are devoted wall ratz and hang doggers in UT… Fun to stumble on your post! We’ll be ‘followers’ 4 sure.

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