THE BLOG

Living With Type 1 Diabetes Is A Luxury - And It Shouldn't Be

14/11/2016 08:08
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A diagnosis of the autoimmune condition type 1 diabetes means relentless finger pricks, injections, and almost constant food calculations and health decisions. The condition is a day-to-day challenge for anyone because there is never a moment where you are not acting as the doctor of yourself. There is rarely a moment where you forget you have type 1 diabetes. I myself have had type 1 since the age of four, and it has been a weight and stress on me, to say the last. Quickly fluctuating blood sugar levels means I can experience rapid swings from high to low, which are both exhausting and dangerous. Still, the 24-7 nature of the condition alone has not always been my biggest challenge. I spent 20 years of my diabetes life in the USA where I had access to the latest diabetes technology, but the costs of my treatment were more than $500 per month.

I am so lucky. This is not a case of being exaggeratedly positive. If I were born somewhere else, somewhere where health systems are less resourced, somewhere in the midst of conflict or somewhere with higher proportions of people living in poverty, I would probably not be alive. If I was alive, I would be suffering intensely painful complications. If I were still living in the United States instead of the UK, I would be struggling to pay rent each month due to the exorbitant and ever-increasing price of insulin and other diabetes supplies.

Life with diabetes is a burden, but this burden is vastly more intense for millions of other people around the world. Through T1International, I have spent years connecting with people from around the globe, I've heard their insights about what it is like to live with diabetes in the places where access to medicine and treatment is a struggle. Salomy in Ghana had to sell all of her belongings to afford insulin. Ahmed in Syria has to walk four hours each month in an attempt to find insulin. Why do I so often hear that today a diabetes diagnosis is no longer a death sentence? That statement may be true for wealthy, stable, and reachable communities, but it is simply not the case worldwide. On a day like World Diabetes Day we should all be thinking about the injustice of this global reality and doing something about it.

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T1International launched a survey in March of 2016 to explore the costs that people pay out of pocket for things like insulin, test strips, and other diabetes costs. With over 200 responses from more than 40 countries, what we found quantifies the global struggles that people with diabetes are facing. We compared monthly out-of-pocket costs for type 1 diabetes with average monthly wages in each country. The data showed us that globally, people spend anything from 0% to 118% of their monthly income for costs associated with diabetes. Just to be clear, this means that some people must find a way to pay more than what they earn each month, just to stay alive.

What our survey highlighted is that pricing and payment for things like insulin, test strips, and other diabetes life-savers is a mess. There is no rhyme or reason as to why some people pay extremely high prices, while others do not. Insulin pricing, like the pricing of most drugs, is not transparent. It is clear that many are suffering not only from the stress of not being able to afford their treatment, but from diabetes complications that could be easily avoided if insulin and supplies were more affordable.

One survey respondent from the USA put it this way: ''I would compromise my care if I skimped on supplies as it is impossible to have good control without regular sugar checks...I've joked with family that it would be cheaper for me to die.''

At T1International we question how it can be acceptable that anyone living with diabetes should go into debt or die an early death because of the outrageous prices for insulin and supplies. For World Diabetes Day this year, we are encouraging anyone interested in the cause to stand up against this inequality by signing our Type 1 Diabetes Access Charter. We have resources on our web page to help you contact politicians in your region and encourage them to prioritize the rights of all people with type 1 diabetes.

With your help, we can create 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 born somewhere without adequate or affordable care.

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