The Role of Privilege in Advocacy - Reflections from the Indianapolis T1International Vigil

Monday morning I sit at my kitchen table. The reservoir indicator on my insulin pump blinks "LOW," warning me to change my site. As I go through the motions of changing my pod, I hesitate. I've drawn up the last of my vial of insulin, and I need more. I open the clean, white refrigerator in my parents' kitchen and pull out another bottle. I flick off the plastic cap and draw more out. The weight of my privilege settles over me like a heavy blanket.

I've just returned from Indianapolis, where T1International held their 3rd annual vigil and protest outside of Eli Lilly Headquarters. While there I had the honor of meeting families who have lost their loved ones due to insulin rationing. The majority of these people were parents who have lost their children - many of them ages 18-26, a now-dangerous age for people living with T1D in the United States.

I arrived to the hotel where most of the T1International Chapter Leaders and families were staying anxious and excited. I had never participated in a protest before, and this was something I felt incredibly passionate about. At the same time, I carried around a feeling of guilt. Guilt that I have a job I love, that also happens to have great health insurance that I am able to afford, with manageable co-pays for my diabetes supplies. Surrounded by families who had lost their loved ones to price-gouging and a greed-fueled healthcare system, it struck me how unfair this all was.

What gives some people the right to life over others? Nothing.

At the vigil, we heard families tell their stories. Stories of how their loved ones were found dead, and how they had wasted away from the lack of medicine that they needed to live. It was difficult to hear. As a privileged type 1 diabetic, it is often easy to forget how closely death lurks behind our shoulders. As many of the signs held up at our vigil shared, this could happen to any of us. We are all one bad day away from falling into a dangerous place.

Eli Lilly is one of three powerhouse insulin manufacturers, along with Novo Nordisk and Sanofi. They are often referred to as "The Big Three," as they control almost all of the insulin market worldwide. Insurance companies, pharmacy benefit managers (PBMs) and the American healthcare system play a huge role in this crisis as well. Research has shown that roughly 1 in 4 people with type 1 diabetes in the USA ration their insulin due to cost - a higher rate than any other high income country surveyed (T1International, 2018).

So as I sit at my kitchen table, filling my pump with the insulin that I can't live without and have so readily available, I feel a number of things. I feel relieved. I feel angry. I feel mystified.

One thing I have learned about privilege is that it must be acknowledged, but it goes further than that. Acknowledgement is no good if you then spend your time wallowing, feeling guilty. It's what you do with that privilege that matters. I have my health, and I have a voice. These are privileges that I will use on behalf of those who lack that privilege.