When I was 15 years old, I remember thinking in terms of basketball and girls: Would I make the varsity team? (Not for another year). Would I have the nerve to ask the girl in my English class out? (Not for another two years!) Never once did I consider a future managing type 1 diabetes.
I have now been living with type 1 diabetes for 35 years. That means I’ve taken about 64,000 insulin shots and poked my fingers about 102,000 times to test my blood sugars. My disease has been a constant companion and challenge. Although it has never been easy or welcome, type 1 diabetes has taught me a discipline that life could not have given me in any other way. While doctors and diabetes educators can advise on insulin, food, exercise and blood sugar management, responsibility for the disease ultimately falls on you. And that’s all you can do: manage the disease, because presently there is no cure.
This inspired me to become involved at a young age with JDRF and later with the American Diabetes Association, organizations dedicated to providing funding for type 1 diabetes research, education and advocacy. However, after years of serving I started to wear out. It wasn’t until I received some troubling news that I wanted to become heavily involved again in the diabetes and patient advocacy community.
My family was vacationing in Central Oregon when my wife and I noticed that our daughter, Katie, then 10, was awfully thin, even though she seemed to be eating and drinking more than ever. We chalked it up to normal “growing pains” and an active summer – until our last day of vacation, when our other daughter complained about not sleeping well. It seemed that Katie had kept her up all night with frequent trips to the bathroom.
Based on my experience with diabetes, I knew frequent urination and thirst were early symptoms. We called a doctor then quickly packed and rushed Katie to Randall’s Children Hospital in Portland, where she was diagnosed with incurable type 1 diabetes.
As any parent of a child with a chronic illness knows, this news felt like a stab to the heart. Katie would live the rest of her life with a disease requiring multiple blood tests and insulin shots every day, and constant care managing her blood sugar levels. Through no fault of her own, our daughter’s life expectancy would be shortened. I was immediately inspired to become involved again in not only helping those with diabetes, but also other chronic conditions, which led me to the Chronic Disease Coalition.
For many chronic disease patients, including for my daughter and me, there are certain things you are going to have to worry about daily: treatment, management of your disease, diet and exercise, in addition to your work and family. Sadly, you must also worry about disease-based discrimination. At the Chronic Disease Coalition, we work to advocate for patients’ rights and fight against discriminatory policies and practices.
For diabetes patients, discrimination can come in many forms. It can come from reduced workplace opportunities. It can come from the school that wants to segregate students with diabetes. And, of course, it can come from insurance companies. I recently received a letter from my insurer telling me they will no longer pay for the brand of insulin I have been using for years. If I wanted to continue using the brand – the one prescribed by my doctors and most effective for managing my diabetes – I would have to pay the full price out of pocket.
This type of petty behavior from insurance companies is all too common for diabetes and chronic disease patients, adding unnecessary burdens for those of us battling chronic disease. The most effective way to fight this type of discrimination is for everyone with chronic disease to become involved, to advocate, to talk with policy makers and to share our stories. Whatever you do, as long as you do something, makes a difference.