The price of insulin varies greatly around the world. So, too, do the experiences of people living with diabetes. The way in which they access their medication can be very different depending on their circumstances. To better understand the unique challenges faced by those who need insulin to manage their diabetes, explore this series of personal stories, below, gathered by the 100 Campaign, from people around the world. Please note that the names and other personal information has been changed to protect people’s privacy. If you would like to share your personal experience of what it’s like for you to access insulin, click here.
My name is Ilya. I’m 15 and I’ve had diabetes since I was five. Thanks to the specialists and parent group at the main children’s hospital in Bishkek, the capital, I’m now quite comfortable with my diabetes management. My life is easier when I’m able to get strips, but this is often hard due to the cost in Kyrgyzstan. Also, the meter I have is quite old and needs replacing, but at a cost of US$80 it’s just too much. This also used to be the case with insulin, but now I can get it for free from the hospital. The main challenge I face is stigma from my teachers and friends at school. Because I have a long-term condition, I’m actually considered “disabled”, but I don’t feel that way because my diabetes doesn’t stop me from doing anything—although sometimes I’m stopped by others.
My name is Fatou and I’m from Mali. I’ve had diabetes for three years now (since I was nine) and it’s a constant challenge for me. I live in a large family and there are many people that need to be cared for, so I sometimes feel like a burden. The cost of insulin is the main challenge. At US$6 a vial, this represents about 25 percent of my family’s income. There aren’t many children with type 1 diabetes in Mali, so doctors don’t always know what to do. Insulin isn’t the only cost—I have to pay to see a doctor and for my blood tests. Thankfully, a local non-profit in Mali, Santé Diabète, is working with local authorities to improve things.
My name is Antonio and I was diagnosed with type 1 diabetes at the age of 25. Initially, my doctors didn’t know what was wrong, but I was lucky because a nurse identified my condition as diabetes, but mistakenly said it was type 2 diabetes. As healthcare workers rarely see people with type 1 diabetes in Mozambique, they associate it with children, so they thought I had type 2 diabetes and gave me oral medicines. Luckily, a new doctor was posted to the hospital where I was being treated and correctly diagnosed me with type 1 diabetes. Because insulin is provided for free once I was put on it, I immediately felt much better. I was lucky, but wonder how many people aren’t as lucky as I was.
My name is Rosario and, because of my diabetes, my mother and I moved to the capital city to live with my aunt to seek better treatment. The doctor correctly diagnosed me with type 1 diabetes when I was eight, but told my parents that if they wanted me to have proper care that I needed to go to Managua, the capital. For the first two years of my diabetes, I travelled there every three to four months. This became too much for my family, so my mom and I moved. Although I miss my dad and siblings, I get very good care at the hospital, free insulin, and also get to participate in the diabetes association with other children my age.
My name is Mary and I’ve had diabetes for many years now. I’m lucky because I live near the capital city and can access all the care and insulin I need. I realise the challenges that others have, but I’m lucky because my father is a government official with a good salary. One of the challenges here in Zambia is finding insulin syringes because they’re only available in private pharmacies. They can cost as much as US$1.50 per syringe. Recently, I’ve developed problems with my eyes, but there are no specialists able to help with the problem. This is the first time I’ve experienced a problem with my diabetes management and I’m worried that it may lead to some loss of vision.
My name is Phuong and I’ve had diabetes for two years now. My mother worries about me a lot. Because I live in the countryside, my parents need to bring me to my consultation in Ho Chi Minh City. This means that they need to miss work and I need to miss school. This is a problem because they lose their day’s wages and I get behind in school. In total, my family spends about US$55 per month on diabetes. This is about 20 percent of my family’s income. The largest cost is not insulin or syringes, but transportation. I also worry that by missing school, I’ll fall behind and not be able to graduate. My parents worry about my future because we’ve never met anyone over the age of 15 with type 1 diabetes.
I’m Ulrika and I’m 13. In Sweden, my diabetes supplies, including insulin and strips, are provided for free. Last year, I was switched to an insulin pump for free via the health system. When my family went to live in a different borough I had to change the brand of my glucometer (blood sugar testing machine) to insure free coverage of the test strips. This is because the test strips provided for free sometimes vary according to area. (Without the government’s assistance, test strips would cost US$1 per strip.) My parents usually pay about $30USD each time I have a consultation with my doctor and a bit less when I visit the nurse.
My name is Carlos and I’m 15. When I was seven years old, I was diagnosed with type 1 diabetes. The financial burden on my parents is heavy because their average income here in Bolivia is US$4,900. My family and I sometimes travel together to purchase new supplies in Santa Cruz, which is eight hours away by bus. In the beginning I didn’t think I was going to live long because there was a time when I didn’t inject myself regularly with insulin because my mother didn’t have any money to buy it. But since I learned about a local diabetes organisation, Vida Plena, I am committed to preventing this situation from happening to other youth with diabetes. When I graduate from high school, I’d like to work as a mechanic.
My name is Emily. I was diagnosed with diabetes in 1999, when I was 21. I’ve been using an insulin pump for my diabetes treatment since 2005. My total costs per month average US$620 (insulin costing US$100, plus pump supplies and test strips), but my health insurance offsets most of these costs and I pay about US$80 a month. I don’t have to travel to receive any of my medicines. They’re all ordered online and shipped to my door. One of my biggest current challenges to living with diabetes is finding time to stay motivated to manage my health amidst a busy life, which includes a career and young children. I’m thankful to be supported in this by quarterly visits to my local endocrinologist and diabetes educator.
My name is Daniela and I was diagnosed with diabetes when I was six years old. Initially, my parents were told to only feed me a diet of tomatoes, lettuce and chicken—nobody told them to inject me with insulin. This made me very unwell. My family has to travel about four hours by bus to the nearest major town, Manta, where we meet with doctors and purchase supplies. My insulin and supplies could cost my family as much US$200 a month, which would be almost all of my father’s monthly income.
Thankfully my family and I have received diabetes education and support for free from the Fundacion Diabetes Juvenil Ecuador (FDJE) since 2005, a local non-profit that supports young people with diabetes in Ecuador. Unfortunately the FDJE cannot always provide this life-saving support as they rely on external support and donations. I now manage a lot of my own diabetes and we also help support other local families affected by diabetes.
At the age of 15, my family discovered I had diabetes after I slipped into a coma. Doctors believed I had been living with undiagnosed diabetes for at least one year. Each month, insulin costs my family approximately US$20 and my test strips US$25. I can afford to check my blood sugar two times per day. Since I live in a city, I can purchase insulin and strips in local pharmacies. I would like to change to an analogue insulin (Lantus), but it is too expensive for my family to afford.
Pamela (Dominican Republic)
I’m 10 years old and my name is Pamela. I was diagnosed with diabetes at the age of four. My family wasn’t always able to afford the insulin and I began to suffer from kidney damage due to high blood sugars. Now, my family receives insulin for free at the main hospital in Santo Domingo where I receive treatment, but still pay US$25 per month for test strips. My health has improved since I started receiving education along with my older brother at the local foundation, Aprendiendo a Vivir.
My name is Carolina. During the first three months of my pregnancy I experienced very high blood sugars because I didn’t know I would require additional insulin. I was fortunate to meet a local nurse who taught me how to manage my condition and was able to help obtain extra insulin and strips. Although at 18, I was happy to give birth to a healthy baby I continue to lack consistent access to insulin since it is not always available via the public health system— although when it is, it is free of charge.