Elizabeth Rowley is the Founder & Director of T1International. She was born in the United States and has lived with type 1 diabetes for almost 25 years. Elizabeth moved to London in 2011 to complete her master’s degree in international development and founded T1International in 2013. Since then, the charity has been advocating for adequate access to insulin, diabetes supplies, medical care, and education for all people living with type 1 diabetes by raising awareness, campaigning, and collaborating with existing diabetes initiatives on the ground around the world.
Life with diabetes is challenging for anyone with the condition. I myself have had type 1 diabetes since the age of four, and it has been a weight and stress on me, to say the least. However, the burden of diabetes is vastly more intense for many others. We often hear that today a diabetes diagnosis is no longer a death sentence. While that statement may be true for wealthy, insured, and reachable communities, it is simply and unfathomably not the case worldwide.
My charity, T1International, has heard and shared numerous stories about what it is like to live with diabetes in the places where access to treatment is a struggle. We have collected data and information about the incredible cost (both financial and emotional) that people with diabetes must bear. We have also campaigned for change, and we encourage anyone impacted by diabetes to consider the global scope of diabetes challenges and to become an advocate for #insulin4all.
Life with diabetes is too expensive
T1International launched a survey in 2016 to explore the costs that people pay out of pocket for things like insulin, test strips, ketone testing, glucagon injections, and other diabetes costs. We received responses from more than 40 countries. What we found confirmed our concerns about the unaffordability of insulin and diabetes supplies worldwide. The sad reality is that diabetes is an exorbitant financial burden for many people.
The survey compared monthly out-of-pocket costs for diabetes with average monthly wages in each country. We found that globally, people pay anything from 0 percent to 118 percent of their monthly income for the costs associated with diabetes. Just to be clear, this means that some people must pay more than what they earn each month, just to stay alive.
One respondent from the United States put it this way: ‘‘I’ve joked with family that it’d be cheaper for me to die.’’
What can we do?
Clearly, there are many obstacles when it comes to access for people with type 1 diabetes around the world. So what can we do about these injustices? Through determination and collaboration, we can create a united front to speak out about these challenges. More importantly, we can work with those closest to the issues to find creative and powerful ways to address the issues.
T1International is working toward a reality where no one has to worry about affording their insulin and supplies and where no one lacks an understanding of their condition or suffers unnecessarily because they were unlucky to be born somewhere without adequate care. This ethos is the cornerstone of the #insulin4all movement.
Working with communities and listening to them, rather than swooping in to “fix” problems without fully understanding them, is vital in leading to real and lasting change. Because of this, advocacy is at the core of what we do so that communities can change things in a bigger way for a more lasting impact. We just launched our advocacy toolkit, which provides anyone ready to start advocating the tools to get going.
The first step
These issues can be overwhelming to think about, but starting with one small action can make a huge difference. Why not sign the Access Charter and spread the word? It takes two minutes to sign and share on social media. Signing will not only show that you support five basic rights for all people with diabetes, but it will also add to the growing list of individuals and organizations who support these rights worldwide.
Advocates around the world will use this charter and the signatures as evidence for the growing global support behind the #insulin4all movement. It will offer international support and pressure for sufficient access to insulin, diabetes supplies, care, education, and protection for everyone with diabetes.
Have you struggled with the cost of diabetes care? Has it affected your health? Share your story by commenting below.