Welcome to another round of Diabetes Blog Week, the fifth year in a row that our blog-happy community has come together to rally around the same topic each day for a full week.
If you remember, this whole effort was spearheaded by fellow type 1 Karen Graffeo in Connecticut who blogs at Bitter-Sweet Diabetes. Karen created this annual week-long blog carnival as a way for dozens of D-bloggers (more than 100 participating this year!) to create an unprecedented sharing of perspectives on issues relating to our illness. You can learn more about this effort, and sign up yourself if interested, here.
For Opening Day 2014, the topic is: Changing the World:
“Whether or not you ‘formally’ advocate for any cause, share the issues that are important to you.”
We’ve talked A LOT about advocacy lately, so it almost seems repetitive… Remember the advocacy-focused February DSMA Blog Carnival? How just last week we wrote about the Diabetes Online Community’s advocacy evolution, and how Amy has oft-written about her own passions aimed at spurring diabetes innovation through efforts like the Innovation Summits and #WeAreNotWaiting movement that’s the focus of this month’s DSMA Blog Carnival?
But in pondering this “Changing the World” prompt, I got to wondering: What if it wasn’t one of us modern-day PWDs answering this question? For example, what would Drs. Frederick Banting and Charles Best — the main men who discovered and first created insulin back in the 1920s — say about today’s diabetes world, if they were still with us?
Turns out Banting and Best weren’t just the first scientific game-changers to discover insulin, but were also the first advocates for universal access:
The discovery was not a cure, but it was a treatment for a previously untreatable disease. Banting and Best did not seek a patent for their discovery, instead selling the rights to the University of Toronto for $1, as a means of ensuring that insulin could be available to all those who needed it.
- Banting Postdoctoral Fellowships program in Canada
One dollar?! Holy fructose! That’d be $13.47 nowadays, but still… wow! Insulin today costs a boatload more than that, even at the lowest insurance copay!
Sadly, it’s now 90+ years later and we don’t have universal access to insulin.
So much has changed for the better, obviously — not only has animal insulin made way for human insulin and (hopefully soon) faster novel insulins, but the syringes have improved tremendously, while insulin pens, infusion pumps and even continuous glucose monitoring has become mainstream. In Banting’s day, changing the world was much more basic; it was all about getting away from starvation diets, miserable DKA-level blood sugars, and quick deaths within months or even a year of diagnosis.
But we aren’t done yet.
Our lives (in the First World) have improved immeasurably through generations of people advocating for improvements — researchers, pharma companies, doctors, patients, parents, and grassroots organizations — all making a difference for the better. Still, we’re all aware that in the Developing World, where people suffer restricted access because of high costs and distribution challenges, many children and adults die soon after diagnosis because they can’t get insulin.
Diabetes is still a death sentence, and that’s outrageous!
Our own online community has pitched in to help with programs like the #SpareARose campaign that raises money to support the International Diabetes Federation’s Life for a Child program and helps get insulin and diabetes services to kids in Third World countries.
And now there’s a relatively new initiative called the 100 Campaign, created by the International Insulin Foundation (IIF), gunning for 100% universal access to insulin by 2022, one century after insulin was first given to a patient. This unique campaign was founded in November 2012 by global D-advocate Merith Basey and two colleagues, and touts the mantra:
100% Insulin Access by the 100th Anniversary
There isn’t much detail yet on how, but the campaign aims to “respond to the current lack of global response to the issue of access to insulin in the world’s poorest countries,” and also to assist uninsured people in the U.S. and people in Greece following that country’s financial crisis — in other words, PWDs everywhere who are in dire need of insulin.
Affordability of insulin is a major challenge in the world’s poorest countries where it can consume as much as 25% of a family’s income. In the U.S., uninsured individuals often skimp on insulin doses to save money, and therefore often end up in emergency rooms (which costs the system more than providing them the drug in the first place).
This campaign literature also talks about acknowledging that type 1 diabetes management goes beyond access to insulin and must include care, education and support, and says the program will be built around six key components of “CHANGE”:
Critical: resources and models already developed will be identified and integrated into the campaign
Harness: the power of youth
Advocacy: to address issues around access to insulin and diabetes care
Needs: of the communities where the Campaign will work will be identified and addressed appropriately
Grounding: of responses and programs in sound academic research and adapted to local settings in a sustainable, locally appropriate way
It’s a nice acrostic and also a message of CHANGE we can really get behind — assuming the organizers are able to turn these touch-points into meaningful actions.
Unfortunately it’s not too clear yet how we patients can support the 100 Campaign. But stay tuned! We’re told that updates are coming soon on how the D-Community can get involved — via a community video campaign and a pilot program for youth advocates to get tools to advocate for insulin access in their parts of the world.
Right now, they’re in the process of figuring out funding sources but have made the decision not to take on any funding from the pharmaceutical industry. Instead, they’re looking at grant-giving organizations and other avenues within the diabetes community. If you’re really motivated to help, they encourage you to get in touch directly by emailing them here. You can also check out their Facebook page, Twitter account at @100campaign, and a great TuDiabetes video interview earlier this year.
This quote from 100 Campaign co-creator Merith hits the nail on the head:
“We see it as a human rights issue. What are we doing as a human race if we can’t provide this to people, and to all those people who unfortunately have not been so lucky? I just think it’s a moral obligation.”
Advocacy can take so many forms these days, from personal connections and emotional support to policy and innovation changes. But for ALL of us who live with a broken pancreas, and owe our lives to Banting and Best, doesn’t it seem fitting to focus some of our energy on universal access to insulin?
We have less than a decade to make that happen, according to the IIF, and in our humble opinions we think it’s a worthy cause to advocate for… and to bring attention to on this Opening Day of D-Blog Week.