Hannah Crabtree received is active on Twitter in 2016 to find more people like her: Type 1 diabetics who hacked their insulin pumps to automatically adjust the amount of insulin delivered.
However, Crabtree soon discovered that a more critical diabetes-related conversation was taking place on Twitter: rising insulin prices.
Crabtree’s mother, who also had diabetes, died in 2006 from complications rationing of expensive insulin. Most people naturally produce a hormone that helps the body convert carbohydrates into energy. People with type 1 diabetes don’t make enough insulin, so they need injectable insulin to stay alive.
But the medicine stopped everything is more expensive. One version has increased in price from $21 to $255 per bottle for example, between 1996 and 2016, and Crabtree often wondered in the years after her mother’s death why more people weren’t talking about the issue. On Twitter, she found 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 managed to turn US insulin prices into a kitchen-table issue in part through the use of Twitter.
Their activism helped make insulin prices a topic of the 2020 presidential election. I 22 states and Washington, D.C. have already passed limits on insurance copayments for insulin, in addition to a surcharge cap The Congress was held last year for some Medicare patients which took effect on January 1. During President Joe Biden’s State of the Union address On February 7, he called limiting out-of-pocket costs for insulin for all Americans.
But these activists have long called for caps on insulin prices, not just co-pays, and Biden’s measure is unlikely to gain power in the current Congress, not to mention the broader problems of high prices for many other drugs that patients struggle to afford. Political intransigence shows the limitations of Twitter as a platform for patient advocacy, despite recent successes. Some fans now say they have cut back on using the platform as trolls dare Elon Musk is now in charge of Twitter, while journalists and politicians are looking at other platforms.
“Twitter is a lifesaver for many diabetics,” he said Nicole Smith-Holt, an activist from Minnesota, pointing to the exchange of insulin that occurs through the platform. “I’m afraid we’re going to lose a major resource for a lot of people.”
Like others looking for a change, e.g defenders of the rights of the disabled and The Black Lives Matter movement.diabetes activists used social media hashtags to find each other, build momentum, and change the public conversation.
Alice Wongdisability activist in San Francisco who helped create #cryptevote hashtag to give people with disabilities the right to vote in the 2016 election, said people are discounting “armchair activism” as frivolous and below grassroots organizing.
“But effective activism has to meet people where they are,” she said. Despite Twitter’s many shortcomings and accessibility issues, Wong said it has been a primary way for many people with disabilities to express themselves.
Many prominent players on Twitter, which some call Diabetes, have a personal connection to the high cost of insulin because they have struggled to afford it themselves or have had family members die due to rationing. However, like Crabtree, they often joined the online conversation by accident, the daily challenge of living with diabetes amplified after strangers retweeted the hashtag #insulin4all.
Hashtag partially created T1 International, a nonprofit organization that advocates for people with type 1 diabetes and does not accept donations from pharmaceutical companies. The organization was founded in 2014 by Elizabeth Pfister, who saw a need for an organization that directly deals with insulin availability.
Diabetes activists have sometimes been wary of banner organizations such as the American Diabetes Association and JDRF, previously Juvenile Diabetes Research Federation, because they get money from drug manufacturers. ADA spokeswoman Rebecca Fisher said the organization has is supported state and federal effort limit out-of-pocket insulin costs. Chelsea-Lynn Rudder, a spokeswoman for JDRF, said the organization has lobbied Congress for years and called 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 insulin companies,” Rudder said, “and those companies are not involved in making decisions about advocacy and research priorities.”
The online conversation inspired one advocate, a Washington, D.C., attorney Laura Marstonto tell her own story about her struggle to afford insulin The Washington Post in 2016 when Sen. Bernie Sanders (I-Vt.) tweeted the graph from the article and suggested that “the greed of the drug industry” was to blame for the rising cost of insulin, share price one of the big three insulin manufacturers, Eli Lilly, suffered a fall.
A similar scenario occurred in November, when the company’s shares fell 4% the day after a tweet from Eli Lilly parody account claimed that the pharmaceutical giant does without insulin. Eli Lilly CEO David Ricks said at the summit that the prank showed that more work needs to be done to lower insulin costs for patients. In both cases, the company’s share price quickly recovered. Shares of Eli Lilly are now trading about 300% higher than they were in 2017.
Eli Lilly did not respond to requests for comment on the role of social media in the national debate over insulin prices.
After her, Smith-Holt became an insulin activist lost her son Alec is 26 years old in 2017 because he could not afford insulin. She began to speak openly about the availability of insulin in the local media, but one day her advocacy really took off she joined Twitter.
“The tweet is just unstoppable,” Smith-Holt said. “It goes out into the universe, and God only knows how many thousands or millions of people see it.”
Smith-Holt was among the group activists who went to Canada in 2019 to buy insulin without a prescription to demonstrate the disproportionately high cost Americans pay. On the first trip, dubbed “#CaravanToCanada,” they attracted attention chirping about his journey. Sanders later joined them on field trip to Windsor, Ontarioon the eve of the Democratic presidential debate in nearby Detroit.
Pfister pointed to real-world successes of the movement beyond the co-pay cap: Since the start of the #insulin4all campaign, all three major insulin manufacturers have new patient assistance programs to help people get insulin if they can’t afford it. Another offline success came in 2020 in Minnesota, where Smith-Holt supported the Alec Smith Insulin Affordability Act, which created insulin safety net which made insulin available for just $35 for 30 days to people in urgent need. The program is in place despite the subpoena from the pharmaceutical industry.
But social networks deal a big blow to activists. There is a lot of misinformation and assumptions about health. The open nature of Twitter makes for a powerful tool for spreading messages, but it also invites backlash, trolling, and vitriol.
“I can’t tell you how many times I’ve been told I should be in jail because I actually caused my son’s death,” Smith-Holt said.
Such poison has already made activists think about the platform even before Musk bought it and began to remove restrictions. Fears that it could get worse have led some to leave the platform.
Smith-Holt said she has scaled back her own online activity. She said it could be because of recent changes on Twitter, but she could also be running out of bandwidth. She works two jobs, at an airline and as a financial aid administrator at a community college.
She is proud of Alec’s Law and showing the country that insulin availability is a problem for people like her son. But, she says, it’s never enough.
“I don’t know what it’s going to take,” she said.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Along with policy analysis and surveying, KHN is one of the three main operating programs in the KFF (Kaiser Family Foundation). KFF is a non-profit organization that provides health information to the nation.