Armed with hashtags, these activists made insulin prices a presidential talking point

Hannah Crabtree got active on Twitter in 2016 to find more people like herself: those with Type 1 diabetes who’d hacked their insulin pumps to automatically adjust the amount of insulin delivered.

Soon, though, Crabtree found a more critical diabetes-related conversation happening on Twitter: rising insulin prices.

Crabtree’s mother, who also had diabetes, died in 2006 of complications from rationing expensive insulin. Most people naturally produce the hormone, which helps the body convert carbohydrates into energy. People with Type 1 diabetes don’t produce enough, so they need injectable insulin to stay alive.

But the medication has become increasingly expensive. One version rose in price from $21 to $255 per vial between 1996 and 2016, for example, and Crabtree had often wondered in the years after her mother died why more people weren’t talking about the issue. On Twitter, she found the people who were doing just that.

Crabtree, a 32-year-old accountant in the Virginia suburbs of Washington, D.C., became part of a small group of patient activists who have managed to turn U.S. insulin prices into a kitchen table issue in part through their use of Twitter.

Their activism helped make insulin prices a topic of the 2020 presidential election. And 22 states and Washington, D.C., have now passed caps on insurance copayments for insulin, in addition to a copay cap Congress passed last year for some Medicare patients that went into effect Jan. 1. During President Joe Biden’s State of the Union address Feb. 7, he called for capping out-ofpocket insulin costs for all

Americans.

But these activists have long called for caps on insulin prices, not just copays, and Biden’s measure is unlikely to gain traction in the current Congress, let alone address the broader concerns about the high prices of many other types of medications that patients struggle to afford. The political intransigence reveals the limitations of Twitter as a platform for patient advocacy, despite recent successes. Some advocates now say they have scaled back their use of the platform, as trolls grow bolder with Elon Musk now in charge of Twitter and journalists and politicians eyeing other platforms.

“Twitter is a lifeline for a lot of diabetics,” said Nicole Smith-Holt, an activist in Minnesota, pointing to the insulin sharing that happens via the platform. “I fear we’re going to lose a main resource for a lot of people.”

Like others

seeking change, such as disability rights advocates and the Black Lives Matter movement, diabetes activists have used social media hashtags to find one another, build momentum, and change the public conversation.

Alice Wong, a disabled activist in San Francisco who helped create the #cripthevote hashtag to give people with disabilities a voice in the 2016 election, said people downplay ”armchair activism” as something frivolous and inferior to grassroots organizing.

“But effective activism has to meet people where they are,” she said. Despite Twitter’s many flaws and accessibility issues, Wong said, it has been a primary way for many people with disabilities to express themselves.

Many prominent voices on what some call Diabetes Twitter have a personal connection to high insulin prices, having struggled to afford it themselves or had family members die because of rationing. Like Crabtree, though, they often joined the online conversation through happenstance, with an everyday gripe about living with diabetes blowing up after strangers retweeted it with the hashtag #insulin4all.

The hashtag was created in part by T1 International, a nonprofit that advocates for people with Type 1 diabetes and doesn’t take donations from pharmaceutical companies. The organization was founded in 2014 by Elizabeth Pfiester, who saw a need for an organization directly addressing insulin affordability.

Diabetes activists have sometimes been wary of the standard-bearer organizations, such as the American Diabetes Association and JDRF, formerly the Juvenile Diabetes Research Federation, because they receive money from drugmakers. ADA spokesperson Rebecca Fisher said the organization has supported state and federal efforts to cap out-of-pocket insulin costs. Chelsea-Lyn Rudder, a JDRF spokesperson, said the organization has spent years lobbying Congress and calling on insulin manufacturers, health plans, employers, and the government to take action to lower the cost of insulin.

“Less than one percent of JDRF’s funding comes from companies that manufacture insulin,” Rudder said, “and these companies have no role in decisions about advocacy and research priorities.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at Kaiser Family Foundation, an endowed nonprofit organization providing information on health issues to the nation.