BENEFITING: Beyond Type 1
ORGANIZER: Beyond Type 1
I won the birth lottery, but had I had been born in sub-Saharan Africa I would most likely be dead. I was born in the United States, and have had insurance that provided me unlimited access any insulin, and all the diabetes testing strips and supplies I have ever needed. I can throw out insulin and replace with a fresh batch at a moment’s notice. I can test my sugar 15 times a day if needed, in addition to having a continuous glucose monitor. I have a stable home, a supportive family and have never gone without access to good nutrition. I have the essential tools required to live without diabetes complications. I am fortunate, but sadly I am in the minority amongst people living with T1D both in the United States and abroad.
Each time I travel during my work with Marjorie’s Fund to sub-Saharan Africa or to communities in southeastern India, my eyes open wider as to the diabetes disparity within my type 1 diabetes family. The vast majority of insulin and glucose testing supplies are donated by NGOs and are intended for children, not adults. Children diagnosed with type 1 diabetes thus receive preferential access to donated diabetes supply and care, but most commonly this care is not enough to prevent the development of complications. These children, while not dying in childhood, are aging out of pediatric support programs and into a void of adult care where their control frequently plummets. If you are an adult diagnosed with type 1 diabetes, you’ll be lucky to get a smattering of donated insulin, and any test strips at all. In some countries insurance programs are in place to help alleviate the cost of insulin, but testing strips are frequently not covered so insulin is dosed both figuratively, and soon literally, blind.
In the developing world, the cost of diabetes supplies is enormous and stretches an already stretched healthcare system. As a result, generations of family members work to support one person with type 1 diabetes. Children with type 1 diabetes are pulled out of school (which often have fees) in order to provide money for diabetes supplies, and are thus growing up uneducated and unable to obtain jobs to help pay for their care.
At Marjorie’s Fund we are working to help break this cycle. Our mission is to empower adolescents and adults living with type 1 diabetes in resource poor settings to not only survive, but to effectively manage their diabetes and to thrive. Our programs focus on enabling sustainable solutions for ongoing access to diabetes treatment supplies and medications, and providing diabetes education to both patients and healthcare providers. We work with local communities and governments to raise awareness of the plight of people living with type 1 diabetes who are likely to be ravaged by diabetes complications without sufficient insulin and glucose test strips.
Marjorie’s Fund currently has projects in Rwanda, Uganda, The Gambia, India and New York City. Recently, thanks to a grant provided by Beyond Type 1, we launched the Marjorie’s Fund Type 1 Diabetes Education Center, in Kasese, Uganda., serving over 100 type 1 diabetes patients. Patients receive healthcare, diabetes education and vocational training skills, with the goals of improving diabetes self-management, creating a path to self-reliance for access to insulin and testing supplies and ultimately to leading productive lives and thrive.
Our work is not possible without organizations like Beyond Type 1! Beyond Type 1 is a new brand of philanthropy leveraging the power of social media and technology, changing what it means to live with a chronic disease. By educating the global community about this autoimmune disease, as well as providing resources and support for those living with Type 1, we will bridge the gap from diagnosis to cure, empowering people to both live well today and funding a better tomorrow. We are here to disrupt diabetes.
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