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.

Where is the love?

Healthcare has been a hot button issue lately here in the states. Of course for those of us who live with a chronic illness, it has always been an issue. But with the 2016 election, healthcare along with many other public policies have come to the forefront of the nationwide conversation. And frankly, the conversations have been quite alarming.

There is an overwhelming population of people who believe that healthcare has to be earned. That the right to live is not an inherent right for all humans (even though our US Constitution specifically states otherwise). People feel that if you work hard, pay your dues, and play by the rules, you will A: Stay healthy, and B: Be granted great insurance coverage, God forbid anything should happen to you. This logic is flawed. Chronic and/or acute health issues can happen to anyone, at anytime, for a variety of reasons. As a species, humans don't like to believe this. It creates what's called "cognitive dissonance," which is when we are presented with a reality that doesn't match up with what we've always believed. It therefore causes dissonance, or disruption, so we do everything in our power to ignore the reality and continue on with our faulty beliefs. We cannot reconcile reality with our wishes because it causes discomfort.

Most people grow up hoping or believing that they will have good health. This is normal - it's a positive outlook on life. However, as we grow older we tend to experience certain realities - maybe we're diagnosed with type 1 diabetes, someone we love is in an accident, our parent gets laid off and we almost lose our insurance - and we are able to shift our beliefs accordingly to read more like this: things may not always be easy. Things could happen to us and our family. But for some people, this adjustment doesn't happen. They continue to believe that bad things come to those who deserve it and that healthcare should be earned.

So is the issue that people are inherently bad and have complete disregard for others? I hope not. No, what I think is happening in the majority of cases is that people are simply rigid in their beliefs due to concerns about their own self-preservation. And this needs to change. We need to challenge our beliefs because they are flawed. Yes, it is a frightening reality to accept - that we could be struck with an illness or hit by a car at any time. But we are doing more harm than good by holding on to the flawed belief that we are in total and complete control of our health or our circumstances. It is not reality.

The reality is, every human has an inherent right to live. And for some humans, what they need to live - and live well - is a bit more extensive than what others need. So I challenge you all - what belief do you cling to that begrudges others their inherent rights? How can you start to chip away at that belief and re-frame it?

Using Anger as a Tool - The Global Insulin Crisis

Being a social worker means I'm rarely surprised by anything. We are often witness to every kind of  bizarre and disturbing occurrence out there. We work in the medical field and see people struggle with a complicated healthcare system while trying to care for themselves or their children. But every news story that blasts through the screen about another diabetic dying from insulin rationing hits me like a punch in the gut.

Insulin prices have been slowly climbing over the past decade. It's a reality that seems to have been kept under wraps - except, of course, from the patients and families who have been struggling in silence each year their copay goes up. As someone who's been privileged enough to not have this issue constantly weighing on me, I could easily turn a blind eye to it. Mutter "yeah, that's a shame," and go about my everyday life. I'll be frank - this path is tempting. This is a beast  of an issue that has numerous parties involved, and differs from nation to nation. In a recent New York Times article regarding insulin prices, Danielle Ofri wrote, "It's hard to know where to direct my rage." And it is. It's overwhelming. Where do we begin? The only answer I can formulate is this: we start with raising our voices. And this has already started: with numerous articles like Ofri's, protest trips to Mexico to exhibit pricing differences, TV news features, and type 1 advocates blasting pharmaceutical companies on social media. Now that the fire is catching, we have no choice but to roll with it.

To be clear, insulin prices are an issue everywhere - not just in the USA. While insulin in Mexico may be affordable for us, it is not the case for most residents of the country. Insulin prices looked at as a percentage of income paints a better picture of the bleak reality. Aside from countries like Canada and England who have universal healthcare, insulin prices are unmanageable for most populations. The cost of living with diabetes takes up the bulk of individuals' or families' income, leaving people scrambling for rent, food, and other necessities.

Info-graphic created by T1International

While coming up with the money is the initial struggle for most, an issue that is specific to the US is the ability to then get your hands on insulin. You need a prescription. You need that prescription submitted. Maybe it gets denied. Then it needs pre-authorization. Then it gets approved, but you have a bigger co-pay than expected. Then you have to download a co-pay card (if you qualify). And then you can pick up your insulin. This process can take days at best, weeks at worst. And contrary to what many people may think, not everyone has the time to be battling on the phone with insurance and refereeing between the doctor, insurance, pharmacy and pharmacy benefit managers (PBM). We do have lives outside of diabetes.

This issue isn't specific to insulin, either. The price of test strips are exorbitant. They are considered a luxury in many 3rd world countries. Even here, some insurance companies (mine included) only cover enough strips for 3 tests a day. To get coverage for more, a letter of medical necessity is needed. In what world does someone with type 1 only need to test 3 times  a day? It's clear that insurance regulations don't seem to be based on diabetes care best practices recommended by physicians.

As I said, it's a beast of an issue. And it angers me. A lot. Instead of sitting on that anger or turning a blind eye, I decided to get involved. Becoming an advocate for T1International is step one for me. T1International is a non-profit that takes no donations from pharma companies and advocates for people all over the world to have access to the medications and education they need.

Enough of suffering through this issue in silence. We're demanding change. We're not waiting. We want #insulin4all, and we want steps to be taken towards it starting now. If you want to get involved, check out T1International, search the hashtag #insulin4all on social media, and check out what other diabadasses have been doing below.

• Libby Russell at I Have the Sugars is selling statement tees to benefit T1International.
• Robin Cressman raises her voice and led a group of type 1s across the border to purchase insulin in Mexico to protest accessibility and pricing issues.