American headlines abound with average Americans who seek funds for their medical treatment or selflessly forgo necessary medications in order to save money for their families. Why are these stories so popular?
Dillon Hooley was a 17-year-old high school student when he started cutting back on insulin, a life-saving drug needed to manage his diabetes. The decision almost killed him in his sleep.
“I wasn’t thinking well, but my parents work so hard to give me what I need, and I didn’t want to put more financial pressure on them,” he told CNN in a 2019 article on soaring insulin costs.
The family’s insurance deductible required them to spend $ 5,500 (£ 4,000) before receiving any benefits, forcing them to pay $ 800 per month for Dillon’s insulin. Coverage was provided by her father’s work at a steel mill in Utah.
Reducing his dosage to life-threatening levels was an illustration of how the teenager “wanted to help in any way he could,” the article’s introduction said.
“My son really didn’t like the CNN story and the way he was portrayed,” says his mother, Mindie Hooley, who saved his life by waking him up and taking him to the hospital afterwards. that he almost fell into a coma due to a lack of insulin in his blood.
“History passed him off as a ‘hero’ who rationed his insulin to save his family and that was not the case at all. He felt he had no choice but to ration, ”she said, describing how the family had suffered financially.
“Our family want the article to put more emphasis on why it felt it needed to be rationed. We want the focus to be on why so many people are to blame for why insulin is so dear, “Ms Hooley told the BBC.
Manufacturers have driven up costs to give deep discounts to intermediaries acting on behalf of insurance companies, says Hooley, who is now advocating for affordable insulin access with T1 International Group.
The family’s insurance company doesn’t pay for Dillon’s continuous glucose meter, test strips, or other supplies, which also cost him thousands of dollars each month. To save money, he orders insulin from an online pharmacist, which leads to batches that sometimes arrive late or spoiled.
Now 20, Dillon has gone to work at the same company as his father, working 12-hour shifts in the graveyard to earn enough money to fill in the gaps that health insurance won’t cover.
Dillon’s story of the medical financial struggle described as positive is not unique. Critics say it misses the point – but some say it can save lives if the call rings out.
Researcher Alan MacLeod refers to these types of stories, describing triumph over adversity, as “perseverance porn”.
MacLeod, who is based in Scotland and represents the Fairness and Accuracy in Reporting group, says stories of working class people persevering against all odds have been told throughout history and testify to the public’s desire for stories. of human interest who put their own life in their life. perspective.
“These kinds of stories about persisting through tough times are really relevant to almost everyone,” he says, adding that they are growing in popularity as people struggle amid the global pandemic.
‘I hope I get there’
The story of a seven-year-old girl from Birmingham, Alabama, selling lemonade to fund her brain surgeries went viral earlier this year.
Liza Scott’s appeal raised nearly $ 400,000 (£ 290,000), which allowed her to travel to Boston for a series of potentially life-saving surgeries.
Her mother, Elizabeth Scott, told the BBC in an email that “it’s amazing that [her story] has reached people all over the world “.
MacLeod says that “kids selling lemonade are a classic example” of the “persistence porn” he documented.
He has seen several cases of children setting up lemonade stands to pay for their parents or their own medical treatment.
“It is never really recognized that if these children lived in a more humane society, their persistence would not even be necessary.”
“If this girl lived in Nova Scotia, Norway or New Zealand, she wouldn’t have to desperately try to sell lemonade on the streets to pay her medical bills.”
Crowdsourcing website GoFundMe says at least a third of its fundraisers are for medical treatment. Healthcare costs are also the leading cause of bankruptcy in the United States.
“ My TikTok fans saved my life ”
Jescenia Ramos is a type diabetic with multiple chronic diseases who uses TikTok to educate people about disabilities – and stay alive.
Whenever Ramos has been kicked out of private insurance, which has happened multiple times and for a variety of reasons, the 21-year-old jewelry designer has relied on TikTok followers to help pay him off. insulin.
“If I hadn’t had a huge number of TikTok fans, I would have been dead. Because no one would have seen GoFundMe,” Ramos told BBC News.
Ramos identifies as Two-Spirit, a third sex in Native American tradition, and uses the pronouns they / them.
They have around 60,000 followers under the name @quiibunnie, and say that being a “reception system failure” is the most recent reason they lost their health care coverage.
Ramos’ non-biological parents, who raised them since they were 17 months old, never legally adopted them while they were their legal guardians.
Because of this, the family’s insurance company decided that Ramos was not considered a dependent – not actually their child – and had to take out a separate coverage plan.
Ramos, who uses a wheelchair, now pays the insurance company around $ 375 a month and still has to pay $ 700 a month for drugs. It’s always cheaper than buying insulin without any insurance.
After their last fundraiser, the third they were forced to do, Ramos felt compelled to lie and tell his followers, “It’s okay, guys. I’m fine.”
“My story was shared on TikTok and people had requested a positive update on the story, and I wish I could give them a positive update on the story, but I really can’t,” Ramos says. .
“Because I still struggle incredibly well financially,” they continue, adding that diabetes is likely to cause other health problems in the future.
“I don’t know if I’m going to be able to say to my rig, like, ‘Oh, that’s never gonna happen again. I will never need your help again. “
“But the reality of the situation is that I will. I will always need help,” Ramos says, adding that “the reality of medical care in America is that you have money or you die.”
“I’m exhausted trying to get people to care enough about my life to donate five dollars,” Ramos says.
Laura Marston says stories of Americans with diabetes losing their access to insulin or being forced to ration the life-saving drug are extremely common across the country.
“If you really think about the concept of paying for insulin, it looks a lot like this: If three companies have all the oxygen in the world and every breath you need, you have to pay,” says Marston, who also has diabetes. .
The 38-year-old computer lawyer lost her own health insurance after the pending death of her employer and the dissolution of the law firm where she began her career.
“It still puzzles me a bit that people who have a genetic hand – in this country at least – are told to work harder and earn more money to pay not only the cost of our medical care, but also to pay for it. supporting industries like pharmaceuticals, ”she says.
Even for families with employer-provided health insurance, benefits may not sufficiently cover medical needs, and the system often seems designed to be as confusing as possible.
When two-year-old Logan Moore’s condition prevented him from walking, his family decided the boy couldn’t wait for a necessary medical device to be approved by the family’s insurer.
So they did it themselves.
One afternoon in 2019, Logan and his mother drove to the Home Depot hardware store in Georgia and asked where to find the parts they would need to build a walker, which they had researched how to make themselves on YouTube.
Instead, employees told the family to get some ice cream while they put together a custom walker for Logan at the company price.
The image of young Logan was shared widely online, but many found the story heartbreaking and “dystopian.”
“It’s awesome!” a Fox TV affiliate in Washington DC tweeted, alongside a photo of the smiling boy.
“It’s horrible,” one person replied.
“It is not comforting. It is an indictment of the American health care system,” replied another.
“Ordinary people are kind, generous and creative, that’s good. Making marginalized people depend on them for their basic survival is not, ”another user tweeted.