With this being World Diabetes Day once again, we’re thrilled to share a story about a young charitable alliance working to raise awareness about insulin access across the globe. It’s something sorely in need of attention, as evidenced by some great initiatives like the International Diabetes Federation’s Life for a Child program, Marjorie’s Fund, Sucre Blue, the 100 Campaign, Insulin for Life, and so on.
It is a World Diabetes Day awareness-raising campaign to call attention to the fact that the lack of access to insulin in many regions around the world is a HUGE problem. The goal is to stir as much conversation as possible about “putting the WORLD back in World Diabetes Day” to focus on the challenges of diabetes worldwide and what we can all do as a community to create solutions.
Behind the campaign is a charitable partnership called Access Alliance, which is actually two UK-based diabetes nonprofits working in collaboration: Elizabeth Rowley’s T1 International, which started out as a blog in early 2013 but about six months later turned into a bigger platform to raise awareness about T1D around the world; and The Pendsey Trust, founded by British journalist Lucy Laycock (who has a cousin with type 1) that works to bring medical supplies and education to disadvantaged areas of India.
The new Insulin4All campaign they’ve created asks people to simply take a photo of themselves, displaying the statement “Put the WORLD back in World Diabetes Day” with the #insulin4all hashtag included.
The photos are being compiled into collages, and they’ve already created a video, below, that may be used down the road to approach authorities. Leading up to World Diabetes Day, Elizabeth says they’ve received nearly 200 submissions from more than 30 countries across the globe. And that number seems to be growing every hour! Click here to participate yourself.
“We have also been thrilled to see submissions that are truly global in representation and scale, and this confirms that people are itching for their stories to be heard and struggles to be shared,” Elizabeth says. “It really means a lot to them that others with diabetes around the world care. We will continue to share the photos and stories, even after the campaign ends, to remind people that these issues need solutions.”
About the Diabetes Advocates
Elizabeth has had type 1 for more than 20 years since age 4, and her husband John was also diagnosed with type 1 at age 23. A few years after enrolling in university in 2006, she started thinking globally about diabetes, and in roughly 2010 realized that many die because of inadequate access to insulin and supplies.
That train of thought prompted her to found T1International, which shares the stories of people with diabetes in resource-poor settings and supports the advocacy efforts of other PWDs and orgs working on that issue.
Journalist Lucy Laycock had traveled to Nagput, India, in July 2011 to film a documentary about the situation of diabetics in developing countries. There she met Dr. Sharad Pendsey, who has his own 1995-founded charity called the DREAM Trust aimed at helping kids with diabetes in that part of the world get medical care and educational or vocational courses, so they can support themselves in the long run. Lucy was inspired, and came home to found The Pendsey Trust.
The two met and began collaborating a few years ago, and soon ideas began taking shape that set the stage for their new Access Alliance and what’s now happening with #Insulin4All. Both Elizabeth and Lucy do this international diabetes advocacy in their spare time; in her “day job” Elizabeth is proud to work for the JDRF UK.
T1International focuses on awareness and advocacy, creating tools and materials to support and educate, while Pendsey works with the DREAM Trust org in India, raising funds to support those diabetic children in need. And the pair also works and helps support other initiatives, campaigns and orgs doing good in those parts of the world.
“We decided early on that we wanted this (new effort) to be an awareness-raising campaign to get people thinking about the issues and, if they are so inclined, to visit our respective websites to learn more and get further involved,” Elizabeth says.
“You’d be surprised how few people realize or think about the issue of lack of access to insulin and diabetes supplies — especially people without diabetes who need to understand what diabetes is first before they can grasp the idea that continual medication is needed and that if someone cannot access that medication they cannot survive. So with this campaign we are planting the seeds and starting discussion around this — which is an ongoing process for T1International and The Pendsey Trust — so that more and more minds can be thinking about the best ways to tackle the complex problems.”
Elizabeth also notes how their aim, in part, is to support other groups doing active charity work across the globe.
“There are some incredible organizations that exist which are supporting people with diabetes worldwide and/or fighting for access to the basics. (They) are all doing wonderful things for people with diabetes and we try to support each other and collaborate whenever possible. In our minds, the more people working on these issues, the better, and each group might have an area or particular strength that another may lack.
“For example, some programs distribute insulin which is vital and life-saving, while others advocate and empower local people to take a stand find the best way to make sustainable change. Ideally, Lucy and I hope to continue to add more and more partners to the Access Alliance which will create a stronger, united voice.”
A key question is: Have they approached Pharma about this? Elizabeth says she personally tries to speak out and share news and information about how much of a problem Pharma companies create by keeping insulin prices so high. (See this recent report on skyrocketing insulin prices). While the #insulin4all campaign is not specifically geared at Pharma, they have been tweeting the insulin providers and feel strongly about the “people before profits” motto.
We couldn’t agree more.
It can be humbling and tough sometimes to remember how good many of us have it, in our First World communities. Sure, we might gripe about access to diabetes devices and tech, the relative accuracy of these tools, or just how much they and our D-medications cost us even with insurance coverage.
But there is an Outrage going on worldwide and in the U.S., because insulin is so unaffordable or inaccessible to so many people. Sometimes we lose sight of that as a community. I really do try to keep that in mind whenever looking inside my refrigerator butter compartment and seeing the boxed insulin vials and pens. I’ve struggled in the past and been finacially devastated as a result of my insulin and diabetes cost, but really I have it good compared to many and I try to keep that in mind. Especially on days like this, when we’re marking this day with such a global focus.
Consider us on board with #insulin4all, and doing what we can to raise awareness and help put the world back into World Diabetes Day!