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Quinn Nystrom and Senator Bernie Sanders

During Tuesday’s CNN Presidential debate, the high cost of insulin in the U.S. was invoked to represent a failing healthcare system.  The burden of insulin pricing on families is a critical issue facing the United States (US). Unlikely just a few years ago, insulin came up no less than four times in Tuesdays debate, and twice during Wednesday’s.  In what was perhaps the most emotional moment for people with diabetes, Senator Bernie Sanders (I-VT) pointed to it in his closing remarks as a stunning example of the social and economic problems facing the U.S.

“Two days ago, I had a remarkable experience which should tell you everything you need to know about what’s going on in America,” the Senator said. “I took 15 people with diabetes from Detroit a few miles into Canada, and we bought insulin for one-tenth the price being charged by the crooks who run the pharmaceutical industry in America today.”

In the audience was Quinn Nystrom, a Minnesota-based speaker and Insulin4All activist, who’d embarked on the bus trip from Detroit to Windsor alongside Sanders, other people with diabetes, and a cadre of press. The moment was a culmination of years of work by Insulin4All activists, T1International, and other unaffiliated patients and their families — a testament to the power of grassroots organizing.

But it's not just the price-fixing and the corruption and the greed of the pharmaceutical industry. It's what's going on in the fossil fuel industry. It's what's going on in Wall Street. It's what's going on with the prison industrial complex. We need a mass political movement

“But it’s not just the price-fixing and the corruption and the greed of the pharmaceutical industry,” Sanders continued. “It’s what’s going on in the fossil fuel industry. It’s what’s going on in Wall Street. It’s what’s going on with the prison industrial complex. We need a mass political movement.”

Sanders was not the only candidate to mention the cost of insulin in his remarks. Montana Governor Steve Bullock was the first to mention insulin right in his opening statement, and Senator Amy Klobuchar (D-MN) gave a shout-out to one of her guests for the evening, Nicole Smith-Holt, whose son Alec Raeshawn Smith died as a result of insulin rationing in 2017.

During Wednesday night’s debate, Senator Kamala Harris (D-CA) rebutted an attack on her own health care reform package by pointing to reports showing that one in four people with diabetes rations their insulin, and Senator Cory Booker made a passing reference to our spending on “insulin drugs.”

But Sanders was the only one to connect the issue of pharmaceutical pricing to the larger issue of corporate influence in American society, a major theme of his campaign, and to also defend his signature policy proposal, single-payer Medicare For All. In fact, Klobuchar only invoked the topic of insulin rationing to argue against Medicare For All and in favor of a public option plan, contending that people with diabetes can’t wait for massive reform.

Amongst the Democrats running for president, as within the diabetes community, there exists a range of perspectives on how to improve access to insulin. However, there should be no debate about how insulin arrived at this moment in the spotlight. The answer is the work of patients, their families, and grassroots organizers.

While politicians have long decried the soaring cost of prescription drugs, the spotlight didn’t fall on insulin until people with diabetes made a concerted effort to tell their stories to the press. Without the backing of organizations like the American Diabetes Association or JDRF, people with diabetes like Laura Marston and Angela Lautner told their stories to reporters, tweets from moms like Doreen Rudolph went viral, and many others aired their worries, frustrations, and dreams on social media (sometimes only to be scorned by others in the diabetes community.)

Most critically of all, the parents of young adults who died from insulin rationing opened up about their unimaginable grief. If Nicole Smith-Holt and Antroinette Worsham, mother of Antavia Worsham, hadn’t demonstrated outside of Eli Lilly and Sanofi headquarters in late 2017 and early 2018, would insulin be the topic of conversation that it is today? It’s impossible to say for sure, but easy to imagine that it wouldn’t be.

That it takes grieving families to lay bare their anguish over and over again for changes to our health care system to even be discussed on the national stage is perhaps its own indictment of American society. But at this critical stage, the patients and families who unequivocally advocate for access to insulin deserve credit for getting us here.

 

Emily Pisacreta is a New York-based freelance writer and journalist focusing on health care and social justice. She has lived with type 1 diabetes for 21 years. Follow her on Twitter @EmilyPisacreta.


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