We won’t stop fighting for affordable insulin

It is 5 p.m. on September 5, and we are speaking out for affordable insulin and honouring the lives of people who have died from rationing. The vigil protest has been planned at Eli Lilly’s corporate and research office in New York City. We carry large hand-made banners and signs, and we all wear blue. 90% of us live with type 1 diabetes. We are joined by friends, family, and fellow healthcare advocates and activists who fight for affordable medicines and healthcare in America and abroad.

For some of us, this is our first public demonstration. For others (including me) we have done this many times before, but this was my first time leading a rally for something as close to my heart as this. We have glucose in our pockets. Some carry insulin while others wear pumps and CGMs. Collectively, we easily span close to 1,000 lived years of diabetes. Some of us have lived with diabetes for nearly 50 years. Others have just been diagnosed.

Lilly was certainly aware that we were going to speak out in front of their offices that evening. Their NJ-NY headquarters are located at the Alexandria Center ® for Life Science. At 4:45 p.m. I see a worker go up on a small crane to cover the logo that is carved into a cement pillar in front of the complex with brown paper and silver tape. The Alexandria Center® is a hub for the pharmaceutical and biotech industry. On its website, it describes itself as “New York City’s first and only collaborative urban campus for life science companies at the forefront of innovation.”

Despite what anyone might think about protests, the First Amendment to the United States Constitution protects our right to conduct a peaceful public assembly, and that includes our right to protest the pricing abuses of the insulin manufacturers.

I’ve gotten pretty tired of hearing about industry innovation, because studies show that there is no correlation between the price of a drug and its’ research and development costs. Currently, America has no federal regulation to control drug costs: industry simply sets prices as high as it can, and has abused the drug patenting system to maintain their monopoly pricing power. We don’t have a free market for prescription drugs and the current regulations are designed to support high prices and profits, not innovation.

There’s good reason for a protest and a vigil. Many people in the US, insured and uninsured, cannot afford Eli Lilly, Novo Nordisk and Sanofi insulins. All people with type 1 diabetes and some with type 2 require insulin in order to live, and because of the crisis some people ration, and die. Nine families gave T1International and the #insulin4all movement permission to use their sons’ and daughters’ names. The individuals who have died were mostly in their 20s. At age 26, a son or daughter can no longer be on their family’s insurance policy in the US, where healthcare is not guaranteed as a right to every person from cradle to grave under the current health system.  A fellow diabetes activist is holding a sign that says, “I am afraid to turn 26.” I don’t blame her. Since the 1990s, the cost of insulin has increased over 1,200%, from 15-20 US dollars per insulin vial to 300 US dollars today.

These are the reasons that motivate us to stand tall with our banners and amplify our message through “Mic check”. This is a simple and well-known activist tool: without permit for sound amplification, any message can be amplified through call-and-response. One person begins a message, and the whole group echoes it back, thus amplifying the volume of the original single voice. We chant “Patients over profits” “Insulin for all” “Diabetes community dying”. Cars honk in support.  People shout, “We agree with you!” as they walk by.

You might consider the weight and extent of industry’s power and influence versus ours— the millions of dollars that fund their marketing, the salaries that support the rate of 1.5 pharmaceutical lobbyists for every single member of congress. And then there’s us: regular people living with a serious chronic illness fighting for all those who depend on insulin for life.

During the vigil, something not unexpected but poignant occurs. Around 5 PM, my blood sugar begins a diagonal line up until it hits 279 mg/dL at 7:30 PM when we finish. I take a correction dose, even though I know the stress hormones are making me insulin resistant. As we gather to discuss the protest and relax, we compare our CGM and Libre graphs: all of our bodies responded similarly.

Here we are with blood sugars that are edging up towards the danger zone because we are fighting for our lives. We are, quite literally, paying with our bodies for our right to live. People with diabetes are resilient, brave, and powerful. Optimism leads us on the darkest days because we don’t have a choice. Diabetes doesn’t take a vacation and neither do we. We have to keep pushing ahead. We don’t give up.