National Diabetes Month and “Change through community”

The start of the pandemic was not the end of other health conditions. It draped a layer of complication over the lives of those already managing a chronic illness. November is National Diabetes Month. Internationally, it also marks World Diabetes Day on Nov. 14, the world’s largest diabetes awareness campaign. It was created in 1991 by the International Diabetes Federation and the World Health Organization in response to concerns about the escalating health threat posed by diabetes. The date is the birthday of Sir Frederick Banting, one of the co-discoverers of insulin nearly 100 years ago.

Over the past ten years, the wholesale price of insulin has tripled, leading about a quarter of type 1 diabetics in the U.S. to ration their insulin to save money. Meanwhile, insulin has become a source of shareholder and industry profits without a ceiling. Three companies dominate the U.S. market for insulin: Eli Lilly (Indiana), Novo Nordisk (Bagsvaerd, Denmark), and Sanofi (Paris, France).

In September 2019, T1International, a nonprofit advocating for global access to insulin and diabetes supplies, held a vigil honoring lives lost due to insulin pricing in front of the Indianapolis headquarters of Eli Lilly. This year, due to the COVID-19 pandemic, T1International organized a virtual workshop and digital demonstration.

The September 26-27 event “Change through Community” took place the week following Justice Ruth Bader Ginsburg’s death. Kevin Wren, T1International Chapter Leader from the state of Washington, repeated her well-known quote “Real change, enduring change, happens one step at a time.” The loss of Ginsburg has particular resonance for T1International volunteers in a time when the Patient Protection and Affordable Care Act (ACA) is under fresh threat of being overturned. At least 20 million Americans could lose health coverage in an instant.

The first panel discussion featured advocates from Lebanon, Panama, Uganda, Pakistan and the U.S. who explained what their challenges were and how they are engaged in getting insulin to those who need it. Rosie Collington from Industry Research Network shared recent research about the relationship between shareholders, list price increases, and the way companies have distributed profits from sales of insulin. Other presentations addressed civil disobedience, racial inequities in diabetes care, LGBTQ+ disparities, diabetes psychology, being a good ally, and storytelling for social change. One of the panelists in the racial inequities session, Kylene Dyanna, emphasized how medical assumptions about your zip code and the color of your skin should not decide your access to care. This echoes the bias toward patients with COVID-19. Priti Krishtel from I-MAK presented on drug patent exploitation. Think the patent stuff sounds dry? This is where it all starts. Over-patenting and unmerited, prolonged monopolies are the embers of the fire.

In another session, Alison Bailey, Senior Advocacy Manager for T1International, interviewed Jazmine Baldwin and Nicole Smith-Holt. Both women lost immediate family members who were rationing insulin because they could not afford it. They spoke of a difficulty not always talked about in the insulin price crisis, which is how hard it is to ask for help financially. It is human nature to want independence. Minneapolis-based singer performer Maria Isa sang in English and Spanish to launch a digital demonstration for #insulin4all at the end of the Saturday session.

Other initiatives are underway this month to educate the public about type 1 and type 2 diabetes and to support patients and families. I salute all such efforts. I have distinct appreciation for organizations like T1International who speak out about the causes and dangers of price gauging. Presentations can be viewed on the T1International YouTube channel.

Katy Giebenhain is a member of the Gettysburg Area DFA Healthcare Task Force.