Hannah Crabtree got in 2016 to find more people like herself: those with Type 1 diabetes who鈥檇 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鈥檚 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鈥檛 produce enough, so they need injectable insulin to stay alive.
But the medication has become increasingly expensive. One version rose in price from between 1996 and 2016, for example, and Crabtree had often wondered in the years after her mother died why more people weren鈥檛 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 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鈥檚 State of the Union address Feb. 7, he called for for all Americans.
But these activists have long called for caps on insulin prices, not just copays, and Biden鈥檚 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 with Elon Musk now in charge of Twitter and journalists and politicians eyeing other platforms.
鈥淭witter is a lifeline for a lot of diabetics,鈥 said , an activist in Minnesota, pointing to the insulin sharing that happens via the platform. 鈥淚 fear we’re going to lose a main resource for a lot of people.鈥
Like others seeking change, such as and the , diabetes activists have used social media hashtags to find one another, build momentum, and change the public conversation.
, a disabled activist in San Francisco who helped create the hashtag to give people with disabilities a voice in the 2016 election, said people downplay 鈥漚rmchair activism鈥 as something frivolous and inferior to grassroots organizing.
鈥淏ut effective activism has to meet people where they are,鈥 she said. Despite Twitter鈥檚 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 .
The hashtag was created in part by , a nonprofit that advocates for people with Type 1 diabetes and doesn鈥檛 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 and JDRF, formerly the , because they receive money from drugmakers. ADA spokesperson Rebecca Fisher said the organization has and 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.
鈥淟ess than one percent of JDRF鈥檚 funding comes from companies that manufacture insulin,鈥 Rudder said, 鈥渁nd these companies have no role in decisions about advocacy and research priorities.鈥
The online conversation inspired one advocate, a Washington, D.C., attorney named , to tell her own story about struggling to afford insulin to in 2016. When Sen. Bernie Sanders (I-Vt.) from the article and suggested that 鈥渢he drug industry鈥檚 greed鈥 was to blame for insulin鈥檚 rising cost, the of one of the big three insulin manufacturers, Eli Lilly, took a tumble.
A similar scenario played out in November when the company鈥檚 stock sank 4% the day after a tweet from claimed the pharmaceutical giant was making insulin free. Eli Lilly CEO David Ricks that the prank showed more work needs to be done to lower insulin costs for patients. In both cases, the company鈥檚 stock price quickly recovered. Eli Lilly stock is trading around 300% higher now than in 2017.
Eli Lilly did not respond to requests for comment about the role of social media in the national conversation about insulin prices.
Smith-Holt became an insulin activist after she lost her son Alec, at age 26, in 2017 because he couldn鈥檛 afford his insulin. She started speaking out about insulin affordability to local media, but her advocacy really took off once .
鈥淭here鈥檚 just no stopping a tweet,鈥 Smith-Holt said. 鈥淚t goes out into the universe and God only knows how many thousands or millions of people see.鈥
Smith-Holt was 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 鈥#CaravanToCanada,鈥 they by tweeting about their journey. Sanders later joined them on an , ahead of a Democratic presidential primary debate in next-door 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. Another offline success came in 2020 in Minnesota, where Smith-Holt championed the Alec Smith Insulin Affordability Act, which created an that made insulin available for as little as $35 for a 30-day supply to people with an urgent need. The program is in place despite a from the pharmaceutical industry.
But social media takes a toll on activists. Health misinformation and speculation abound. The open nature of Twitter creates a powerful tool for spreading a message but also an invitation for backlash, trolling, and vitriol.
鈥淚 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,鈥 Smith-Holt said.
Such venom already gave activists pause about the platform even before Musk bought it and began to remove restraints. Fears it could get worse have led some to leave the platform.
Smith-Holt said she has pared down her own online activism. It could be because of recent changes on Twitter, she said, but she also might just be running out of bandwidth. She works two jobs 鈥 for an airline and as a financial aid administrator at a community college.
She鈥檚 proud of Alec鈥檚 law, and showing the country that insulin affordability is an issue for people like her son. But, she said, it never seems to be enough.
鈥淚 don鈥檛 know what it鈥檚 going to take,鈥 she said.
