On December 10, 1948, the United Nations General Assembly presented the Universal Declaration of Human Rights, drafted by individuals from varying legal and cultural backgrounds as a general rubric for all nations. Article Three of the document states, “Everyone has the right to life, liberty and security of person.” Citizens and policymakers in most Western nations have interpreted this to mean a right to access affordable healthcare, and they have supported the UN’s vision in the form of drug price controls, universal healthcare, and other practices.
But here in the United States, many individuals with chronic medical needs continue to fight daily for their right to live. Type 1 diabetics are among them.
Type 1 diabetes is an autoimmune disease in which the pancreas stops producing insulin, the hormone that converts sugar into cells. To survive, Type 1 diabetics must inject insulin daily. Going without insulin is like going without water or oxygen—within a few days, individuals will die. But the life-saving drug has a price tag of around $1300 per month, meaning that a year’s supply can run one individual over $15,000. This does not include other costly supplies, such as test strips, glucose monitoring devices, and insulin delivery systems (pumps).
The price of insulin has increased more than 1200% since 1996 with no changes to the formulary. The big three insulin manufacturers, Eli Lilly, Sanofi, and Novo Nordisk, have been accused by multiple attorneys general of price collusion and are the target of a class action lawsuit. This is not what insulin’s discovers intended—those doctors and scientists sold the drug’s patent to the University of Toronto for a mere three dollars in the 1920s. The University then handed it to Eli Lilly for free so that the drugmaker could expand insulin’s availability.
Defenders of the pharmaceutical industry, including members of the public, routinely note that Walmart sells cheaper insulin over the counter, but this is not a long term solution. The older formulary is less effective and carries an increased risk of hypoglycemia. Is it just to create a two-tiered system in which certain patients have access to the newest and most proven insulins while others are told to “be grateful” for the generic option?
Pharmaceutical industry representatives also note that insulin manufacturers offer assistance programs for those who cannot afford the drug. However, it is difficult for even the neediest individuals to meet the criteria, and the supply is limited. For these reasons, even company representatives have admitted that the programs act as “band-aids.”
These realities have brought together insulin-dependent diabetics and their families from around the world. On September 30, 2018, many of us gathered outside of Eli Lilly’s headquarters in Indianapolis to push back against the inflated prices. This event was sponsored by People of Faith for Access to Medicines (PFAM) and T1International, the global nonprofit behind the #insulin4all campaign that was founded by Elizabeth Rowley to support individuals’ legislative and community efforts to improve access to insulin. T1International is one of the few diabetes advocacy organizations to not accept funds from the pharmaceutical industry.
“This is the fight that will be won by patients, not lawyers.”
Rowley led demonstrators through various chants and passed the megaphone to advocates such as Angela Lautner and Lori Ruder, who lead the Kentucky-Ohio-Indiana #insulin4all group, and Nicole Smith-Holt, who lost her son in 2017 after he began to ration his insulin supply until payday.
The demonstration culminated with attendees’ attempts to deliver insulin vials filled with written messages of what people have sacrificed to pay for insulin—rent, groceries, car payments, to name a few. In one vial, Smith-Holt placed some of her son’s ashes to represent the ultimate sacrifice. Police were waiting for us outside of the towering main building with a message that Eli Lilly did not want us on the grounds. Though we didn’t get far, it was a strong moment.
Fran Quigley, the director of PFAM, has said of efforts to reduce insulin prices, “This is the fight that will be won by patients, not lawyers.” We are all, or will eventually be, patients. This fight not only defends the 1.25 million Americans with Type 1 diabetes; it defends all Americans. This is because insulin advocates are fighting more broadly for access to healthcare and lifesaving medicines. We are fighting so that every American, including those with chronic conditions, can live their lives to the fullest.