In 1921 insulin extraction was discovered by Frederick Banting and his team, who sold the patent for $3 as a gift to humanity. Even a century ago, Banting appreciated how critical this discovery was for those whose bodies do not produce insulin and the corresponding opportunity it created for us to be exploited.

Yet today, the big three insulin companies (Eli Lilly, Novo Nordisk, and Sanofi Aventis) have turned Banting’s invention into a multibillion dollar a year industry in the United States.

Since my diagnosis with type 1 diabetes in 1996, the list price of a single vial of Humalog insulin has risen by over 1200%; what cost $21 in 1996 now costs over $275. Each vial lasts approximately one to one and a half weeks; if I calculate that need along with the annual price hikes, it means that, to date, over $80 000 has been paid for the insulin my pancreas cannot produce. If pharma continues to increase insulin prices at the rate they have done over the past two decades, then if I’m fortunate enough to live to 70, my life in insulin will have cost millions of dollars.

This is the reality of having insulin dependent diabetes in the US. It’s true that insurance may cover some of this cost for those lucky and healthy enough to maintain a job with employer provided health coverage. (Until the enactment of the Affordable Care Act in 2014, type 1 diabetes was considered an exclusionary pre-existing condition, making us unable to purchase insurance at any cost.) Yet even for the insured, increasingly high deductibles, gaps in insurance from job changes, and an endless maze of administrative hurdles mean that as the price of insulin climbs, Americans with type 1 diabetes pay evermore out of pocket for the insulin we need to live. We are at the mercy of the pharmaceutical industry’s pricing and there have even been reports that some patients, unable to afford insulin, have died of diabetic ketoacidosis.

Against this backdrop, and desperate to prevent others’ needless deaths, a group of unfunded diabetes patients have rallied together through Twitter. Since 2014, we’ve used social media to tell our stories, rally supporters, and lobby federal and state legislators to pursue legislation aimed at curtailing this trend. We’ve also urged patient advocacy organisations to either use their relationships with companies producing insulin to speak out against pricing, or to rethink their joint partnerships and acceptance of money from these entities.

Individually, and as small groups, we’ve worked with legislators and international news organisations to uncover and tell the story of the ever increasing price tags put on our lives.  

In this ongoing grassroots battle, patients scored a rare win in Nevada in June 2017, when the “insulin transparency” bill (Senate Bill 539) was signed into law. This law requires that if the manufacturers of insulin and other essential diabetes drugs raise their prices by more than the annual rate of inflation, then they must submit a report explaining (among other things) the factors behind the increase, the cost of production, advertising costs, and any rebates negotiated with pharmacy benefit managers. Nevada’s Department of Health and Human Services will then publish this information, providing patients with much needed transparency on these life saving medications.

Armed with this information, patients can overcome pharma companies’ contentions that extreme prices are necessary for research and development (which we’ve seen very little of in the insulin space). We’ll also be able to more effectively lobby federal legislators to implement nationwide solutions to the uniquely American insulin pricing crisis.

The insulin transparency law also requires any nonprofit organisation that advocates for patients, and which is operating in Nevada, discloses contributions from drug manufacturers—a means to address any industry conflicts of interest among patient advocacy groups.

While individual patients relentlessly advocated in the heated battle to enact this transparency law, commentators have observed how the overwhelming majority of diabetes patient advocacy groups, including Juvenile Diabetes Research Foundation and the American Diabetes Association, have mostly remained silent on the legislation.

The trade groups Pharmaceutical Research and Manufacturers of America (PhRMA) and Biotechnology Innovation Organization (BIO) recently sued officials in Nevada in their bid to derail the bill and keep insulin pricing information from the public. PhRMA claims in its lawsuit that the law is unconstitutional and that such transparency for patients will result in “economic harm [that will] spread to the entire Nation.” In a further move, PhRMA filed an injunction motion requesting that the Nevada federal court delay enacting the law until the conclusion of this lawsuit. Yet last month the district judge denied the motion, clearing the way for the insulin transparency law to take effect immediately. The first required reporting is scheduled to occur in 2018.  

Other states are following suit with their own approaches to transparency. California’s governor recently signed legislation to shine a light on the pricing decisions behind a wider range of drugs, and Massachusetts is considering a transparency bill for the top 20 most expensive drugs. PhRMA and BIO are likely to heavily lobby against and litigate these bills through the federal courts, using highly paid attorneys to run up litigation costs in the hopes of deterring similar legislation in other states. And drug manufacturers will continue to give millions to our patient advocacy organisations.

For grassroots patients like me, however, this is quite literally a fight for our lives. We will not be silenced, we will continue to disrupt the status quo pharma has enjoyed for decades at the expense of our health and finances, and we will not stop until life saving medications are affordable and easily accessible to all those who need them for survival.

Laura Marston is an intellectual property attorney and a relentless patient advocate for affordable insulin in the United States. Laura has lived with type 1 diabetes for 21 years, since she was 14. She lives in Washington DC.

Competing interests: None declared.