Activists brought insulin costs to national stage
Advocates found each other, gained traction on Twitter
Hannah Crabtree got active on Twitter in 2016 to find more people like her: 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 insulin. Most people naturally make the hormone, which helps the body convert carbohydrates into energy. People with Type 1 diabetes don’t produce enough, so they need insulin to live.
But the injectable medication has become increasingly expensive.
One version rose 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 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 in February, 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 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.
“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 inferior to grassroots organizing.
“But effective activism has to meet people where they are,” she said. Despite Twitter’s flaws and accessibility issues, Wong said, it has been a primary way for many people with disabilities to express themselves.
Many voices on what some call Diabetes Twitter have a personal connection to insulin prices, having struggled to afford it themselves or had family members die from rationing. Like Crabtree, 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 a group 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 1% 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.”
The online conversation inspired a Washington, D.C., attorney named Laura Marston to tell her story about struggling to afford insulin to The Washington Post in 2016. When Sen. Bernie Sanders, I-Vt., tweeted a chart from the article and suggested “the drug industry’s greed” was to blame for insulin’s rising cost, the stock price of one of the big three insulin manufacturers, Eli Lilly, took a tumble.
A similar scenario played out in November when the company’s stock sank 4% the day after a tweet from a parody Eli Lilly account claimed the pharmaceutical giant was making insulin free. Eli Lilly CEO David Ricks told a summit that the prank showed more work needs to be done to lower insulin costs. In both cases, the company’s stock price quickly recovered.
Eli Lilly did not respond to requests for comment.
Smith-Holt became an activist after she lost her son Alec, at age 26, in 2017 because he couldn’t afford his insulin. She started speaking out about insulin affordability to local media, but her advocacy really took off once she joined Twitter.
“There’s just no stopping a tweet,” Smith-Holt said. “It goes out into the universe and God only knows how many thousands or millions of people see.”
Smith-Holt was among a group of activists who traveled to Canada in 2019 to purchase insulin over the counter to showcase the disproportionately high cost Americans pay. During the first trip, dubbed the #CaravanToCanada, they garnered attention by tweeting about their journey. Sanders later joined them on an excursion to Windsor, Ontario, ahead of a Democratic presidential primary debate in neighboring Detroit.
Pfiester pointed to real-world successes the movement has had beyond the copay caps: Since the #insulin4all campaign started, all three major insulin manufacturers have new patient assistance programs to help people get insulin if they are struggling to afford it.
But social media takes a toll on activists. The open nature of Twitter creates a powerful tool for spreading a message but also an invitation for backlash and vitriol.
“I can’t tell you how many times I’ve been told that I should be in prison because I actually caused the death of my son,” Smith-Holt said.