T1International at SNF Camp
From the age of 8 until the age of 18, I attended Camp Granada, a home away from home for people with Type 1 diabetes in Illinois, USA. Each summer, I anxiously waited for that week to arrive. I lived for camp, the one place where I felt normal and was surrounded by other people who understood me without having to say a word. Camp taught me to do my own blood sugar tests and to inject. It taught me that people with Type 1 diabetes are warriors, and that when you have your battalion for support, you can do anything.
A lot has happened since the last time I attended Camp Granada, nearly ten years ago. I have learned that many warriors with Type 1 diabetes are not as lucky as I am. Most do not get the chance to attend camp, and people with Type 1 diabetes around the world still die because they cannot access or afford their insulin and other essential diabetes supplies, or because there is no understanding of Type 1 diabetes symptoms and how to treat it. This is an injustice that I am outraged by, and one that I work to change every day since I set up T1International.
Last month, I found myself at camp again. Camp Waromo in Gulu, Uganda was a diabetes camp hosted by the Sonia Nabeta Foundation (SNF), a wonderful organisation working to ensure that everyone with diabetes in Africa has access to medicine and support they need. T1International supports people and organisations around the globe that are working towards sustainable solutions for people with diabetes, so we were honored to be invited and to share our resources and knowledge.
Type 1 diabetes in Uganda
In Uganda, access to the diabetes basics like insulin, syringes, and test strips can be a challenge. There is some support provided through programs like Changing Diabetes in Children (CDIC), but no product is ever available on a lasting basis, as is true for CDIC which is winding down portions of its program in December. Donated goods are never sustainable and could stop at any moment. This set-up is stressful and unfair to the patients. Most of the Type 1s are on mixed insulin and high-carbohydrate diets, and blood sugars run high because correction doses are not available or understood.
These challenges, and so many others, make life with Type 1 diabetes a much larger burden for these marginalized groups than for those of us who are privileged to not only have the basics, but also extra tools, technology and support to manage our condition day-to-day. This is why Camp Waromo is so vital. Warriors had the opportunity to connect with others for encouragement and to learn about how to make the most of the insulin and supplies that they do have access to.
SNF did a fantastic job with the camp and facilitated useful sessions. There were a variety of educational, motivational and recreational activities for the campers to participate in, including a special visit to a national park with sightings of countless giraffes, plus hippos and elephants in the wild!
We are all advocates
I loved working with the Sonia Nabeta Foundation because the SNF Founder, Vivian, and the rest of the team know that in order to have sustainable access to insulin and supplies in Uganda, the warriors need to speak up for themselves. They know how important it is for young advocates to carry out a plan to ensure the government steps up and meets the rights of people with diabetes.
On the second day of camp, I delivered an intro to advocacy session with all 53 of the Warriors. Two campers helped by translating my words into the local language so that the concepts and ideas would get across more fully. We ended the session with a loud battle cry: “I am an advocate – #insulin4all!”
Advocacy Toolkit in Action
The main aim of my attendance at Camp Waromo was to work through the contents of the T1International advocacy toolkit, funded by Beyond Type 1, to create an action plan with the Warriors who were ready to become advocates in Uganda. T1International is in the process of carrying out advocacy training with our team of volunteer Global Advocates, so I came prepared with training materials and ideas to get the Warriors focused on setting a goal and carrying out a plan.
I facilitated two sessions with the eight Camp Waromo counsellors about their advocacy plan of action. Together we picked the first goal and talked through collecting data and taking action. The goal: get the government to provide one syringe per day to people with Type 1 diabetes by the end of this year.
From Plan to Policy
Syringes are a particularly urgent need because the current provision of them will end on December 31, 2017. As I mentioned, no donated supplies are ever certain, so the government needs to take responsibility in supporting this small but incredibly vital aspect of Type 1 diabetes management. There is no point in having insulin if you cannot administer it with a syringe.
The SNF counsellors and I worked together to focus in on our goal and we refined the key message that they want to get across when speaking to others about how important provision of syringes is. They came up with some really compelling arguments about how not supporting this initiative would mean a less productive work force and a missed opportunity for a better Uganda. With the support of the SNF, they also have plans to collect data to back up their demands, and they will seek out media exposure and campaign via social media.
I encourage you to follow #insulin4all and #t1dafrica on social media and support these efforts. Together we will continue to push this goal forward until it is achieved.
I want to say another huge thanks to the Sonia Nabeta Foundation, not only for the amazing work that they do, but also for the value they see in working collaboratively for a better world for people with Type 1 diabetes.
To support the Sonia Nabeta Foundation, please click HERE.
Note: A version of this story was originally posted on the T1International blog.
Read Long-term Access for People with Type 1 Diabetes by Elizabeth Rowley.