Diabetes Blogs

What I Saw at the #Insulin4All Rally

Quinn Nystrom and fellow protesters at #Insulin4All RallyMy fellow protesters and I gathered on the grounds of Eli Lilly to protest the spiraling cost of our diabetes life support—insulin. (Photo: Quinn Nystrom)

Alec Raeshawn Smith. Shane Patrick Boyle. Antavia Lee Worsham. Seely Weatherell. Danielle DeShae Dunbar. What do these five people have in common? They’ve all lost their lives because of the outrageous cost of insulin in the United States. Sadly, they are just a few of the names of people who’ve died in recent years, as the cost of insulin continues to soar.  

As I mentioned in my previous post, my insulin cost around $20 when I first started using it in 1999. Today that same vial is $395 and I go through 2 vials in a month. And this is just ONE of my diabetes prescriptions. 

Over the years I've become increasingly more passionate about this topic so when I heard the call to join in the #Insulin4all Rally being held on the grounds of pharmaceutical manufacturer Eli Lilly and organized by T1International and People of Faith for Access to Affordable Medicines, I booked my plane ticket.

Ever since my brother Will was diagnosed with type 1 diabetes nearly 23 years ago (a few years before I was diagnosed), I’ve been convinced that if we want to see a change we must be willing to show up and have our voices heard.

Simple Demands for a Solvable Problem

The high cost of insulin in the United States is criminal. As people with diabetes and those affected by it, it's time now to raise our voices in our communities, in the media and to our elected officials. It's important to let know why this is a problem and what we expect to change.

Here's what we want: 

  • Transparency about the costs to make one vial of insulin and how much manufacturers profit from each vial. 
  • Affordable insulin: this is our life support.

Nearly 100 people gathered from 12 states. I was encouraged to see significant media coverage of the event, too. A crew from PBS was there; I saw French documentary maker, NPR, and a handful of local stations showed up to film the protesters.

I was moved by several speakers who had all been tragically affected by the high cost of insulin. People often ask me how I stay fired up after almost 23 years of being a diabetes advocate and I tell them I’m constantly inspired by surrounding myself by other diabetes advocates.

The people at this event were no exception. Their poignant posters, their custom t-shirts (“affordable insulin is an oxymoron"), their passionate chants (“Come on, come on! Join the fight! Access to insulin is a human right!”). It all stirs my heart and gives me the fuel to fight which I'll continue until the President of the United States and the Secretary of Health and Human Services take notice and do something about to reign in insulin pricing. Until then, I won’t be retiring.

Vials of Insulin at the #Insulin4All Rally Message in a bottle. These slips of paper inserted into empty insulin vials serve as heartbreaking reminders of the personal sacrifices made by people with diabetes in order to afford their insulin. (Photo: Quinn Nystrom)

Before we went to the rally we gathered with other advocates—in host houses—to write messages in empty insulin vials that were later delivered to Eli Lilly at the end of the rally. The messages were simple—we let them know what we had sacrificed or had to give up because of the high cost of insulin. For me, it was my graduate school loan. If it wasn't for the high cost of keeping myself alive with insulin for my diabetes, I would've been able to pay off my loans by now. Other sacrifices written on those small pieces of paper in the vials were starting a family, buying a house and having peace of mind. 

Nicole Smith-Holt and James Holt Jr.—parents of Alec Raeshawn Smith—carefully poured their son’s ashes into one of the vials. Can you imagine their pain?

Looking at those ashes in the insulin vial it's hard not to notice the unfairness in our world. How is it that we live in one of the wealthiest nations in the world, yet in my home state of Minnesota, Alec Raeshawn Smith died at the age of 26 because—three days shy of his payday—he couldn’t afford his insulin. His parents now spend their time fighting to keep their son’s memory alive, hoping to ensure that not one other parent, grandparent, sibling, have to put ashes into an empty insulin vial. 

This is a solvable problem. Will you join me, Nicole and James and raise your voice?

Until the next protest, here what you can do now to educate yourself and help raise awareness of the issue: 

  1. T1International, the organization that hosted this rally, is working to link volunteers and fundraise around the world with the goal of lowering the cost of insulin. Their advocacy toolkit can help guide you through how to get started as a diabetes advocate.
  2. The website GoodRx has insulin savings coupons and a chart comparing the prices of various brands. Note: Bear in mind there is no generic version of insulin and just three manufacturers—Eli Lilly, Novo Nordisk, and Sanofi—control the vast share of the market. 
  3. Learn more about why the cost of insulin keeps rising by reading the OnTrack Diabetes story about the problem.


No comments yet.