My Fight for Information

My Fight for Information

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Diabetes has been a big part of my life for a long time, but during my fall semester of my senior year at university in my International Social Work class, I decided to focus on diabetes and access to resources, specifically insulin. As I began my research, I quickly realized that the subject I picked had a lack of reviewed journals and data on the subject. I found a few, but they were extremely difficult to locate and many were outdated. Although I had friends who volunteered with international diabetes organizations and talked about their experiences and what they learned, I was not able to use this information as a credible source for my paper. I had first or second hand knowledge, videos, and blogs but they did not count for peer reviewed articles even though they say so much and help give a picture of the situation.

I soon discovered that it would be difficult to focus on access to diabetes resources in one specific country like I initially planned. I worked with my professor and completely adjusted how I looked at the paper. I was able to pull overall healthcare data from the specific country I focused on and then added overall diabetes and insulin access data from articles focusing on various developing countries. I had to talk about these two topics separately in my paper and I had make assumptions to back up the experiences I knew of and the videos and articles I had found. This was frustrating and it made me realize the need for more data about this topic worldwide.

During my senior year I approached several of my professors not only for assistance with my paper, but for a personal reason: my health insurance. I had been facing battles with my own health insurance for years, and I was searching for resources and advice. I was again faced with a situation where it was difficult to find the specific information I needed to back up what I knew. The co-pays and various fees I had to pay for my health insurance were outrageous. My insurance did not cover eye appointments, anything to do with mental health, well visits, or vaccinations, and it barely covered an insulin pump or CGM. I had to jump through hoops of paperwork and endless forms to prove I needed not just my diabetes supplies and care but also all my other medical needs. The insurance company told me that I only needed to check my blood sugar a certain number of times per day, which limited my test strips, and they questioned how much insulin I needed.

The company started covering less and less of my diabetes health needs and their policies got increasingly strict about the types of things they would possibly cover. I have been keeping a back-up stock of medical supplies for years because of the fear that my insurance coverage would be mysteriously dropped, or that I would be “lost” in the system and not be able to get what I needed in a timely manner.

I spent many of my years in high school and college bending over backwards to prove I was eligible for health insurance. With the help of Children Medical Services I had support paying for things because of my socioeconomic status and my poor insurance, but that ended when I turned 21. At the time, that also meant I could only visit certain care providers.

Before the Affordable Care Act (ACA) was put in place in the USA, I feared that I could potentially lose a future job because of the financial impacts on an employer. Before ACA, I also knew that I could not get health insurance on my own because I had a pre-existing condition. At a young age I learned that diabetes is expensive and that health insurance is a constant battle. Still, I am grateful that I was able to have coverage at all. I also learned a lot. Navigating the system continued my practice of advocating and standing up for myself to get what I need for my care.

I also realized how grateful and lucky I am to have access to supplies, education, and a support community. Thinking about the difficulties I had accessing information for my paper and all of the things I need to stay healthy with type 1 diabetes, I struggle to fully comprehend what it is like for other people with diabetes who cannot access insulin or test strips – like the people in the places I researched.

It not only saddens but also frustrates me that many people around the world with diabetes do not have the access or support they need, no matter how much they fight for it. The lack of data about this topic means we do not have a full understanding of what’s going on around us and around the world. Writing my paper at university and the issues I had with my former health insurance made me realize that information and data is something that we need to keep fighting for.

Mindy is the Program Assistant at the College Diabetes Network (CDN) in Boston, MA and is a former CDN Chapter Leader. She graduated from the University of Georgia with a Bachelor’s in Social Work and a minor in Sociology in May of 2015. She was diagnosed with type 1 diabetes when she was 7, and she has been involved in the Diabetes Community since then. She thoroughly enjoys Diabetes Camp, travel, crafts, reading, and being awkward. You can check out her blog here and follow her on Twitter and Instagram @mindy_bartleson.