America’s dystopian health care system is forcing people into a lethal popularity contest.
By Stephen Marche
This piece originally appeared on Mother Jones
Two days after receiving a diagnosis of stage 4 breast cancer, Marisa Rahdar had to figure out how to beg for her life. “I didn’t want to do it at all,” she recalls. Rahdar is a 32-year-old bartender from Detroit, and she has insurance. Her brother, Dante, the one in the family who’s good with numbers, worked out the amount she’d need to cover her out-of-pocket medical expenses and take a break from serving beer so she could rest up after chemotherapy. The number he came up with was $25,000. Next came the pitch. That job fell to Dante, too. He chose YouCaring.com, rather than another crowdfunding site, because he’d recently seen a campaign posted on GoFundMe.com by a guy trying to raise money for potato salad; he didn’t want to post his sister’s suffering beside practical jokes. The pitch was brief:
My sister, Marisa Rahdar, was diagnosed with breast cancer on March 16th of 2017. Through the testing phase she has also been diagnosed with cancer located in her lymph nodes and tailbone. This upcoming week she will begin radiation and meet with her team of doctors at Troy Beaumont to finalize a plan of action for her treatment. In the meantime, we have estimated her medical expenses not covered by her insurance, as well as her living expenses during the time of her treatment. We will update this site during her treatment so you can all get a small sample of that famous Marisa “charm.” For those concerned, her eyebrows remain unsullied.
By now, almost everybody has seen pleas for help covering urgent medical bills in their Facebook feeds. With health care costs and high-deductible plans on the rise for more than a decade, medical expenses are the largest single cause of bankruptcies nationwide. Despite Obamacare’s efforts to rein in costs, the average deductible on a typical plan under the Affordable Care Act is $2,550—nearly as much as the entire monthly take-home pay of the average American worker. President Donald Trump’s efforts to destabilize Obamacare have already raised premiums, and experts predict the cost of a deductible under some versions of Republican health care legislation would rise to an average of at least $4,100. Meanwhile, according to the Federal Reserve, 44 percent of Americans in 2016 didn’t have so much as $400 saved up in the event of an emergency.
Health care in America is the wedge of inequality: It’s the luxury everyone has to have and millions can’t afford. Sites like YouCaring have stepped in to fill the gap. The total amount in donations generated by crowdfunding sites has increased elevenfold since the appearance of Obamacare. In 2011, sites like GoFundMe and YouCaring were generating a total of $837 million. Three years later, that number had climbed to $9.5 billion. Under the Trump administration, YouCaring expects donations to jump even higher, and the company has already seen an estimated 25 percent spike since the election, which company representatives believe is partly a response to the administration’s threats to Obamacare.
Crowdfunding companies say they’re using technology to help people helping people, the miracle of interconnectedness leading to globalized compassion. But an emerging consensus is starting to suggest a darker, more fraught reality—sites like YouCaring and GoFundMe may in fact be fueling the inequities of the American health care system, not fighting them. And they are potentially exacerbating racial, economic, and educational divides. “Crowdfunding websites have helped a lot of people,” medical researcher Jeremy Snyder wrote in a 2016 article for the Hastings Center Report, a journal focused on medical ethics. But, echoing other scholars, he warned that they’re “ultimately not a solution to injustices in the health system. Indeed, they may themselves be a cause of injustices.” Crowdfunding is yet another example of tech’s best intentions generating unseen and unfortunate outcomes.
The night Rahdar’s brother, Dante, wrote the pitch, she looked it over. She liked the title he’d given it—”Help Marisa Kick Cancer in the Teeth”—and the crack about the eyebrows, and so she told him, sure, go ahead and post it. But then she and Dante paused. They burst out laughing. It was April 1, 2017. They agreed to post it the next day. They didn’t want her suffering confused with an April Fools’ joke.
In the late 19th and early 20th centuries, many Americans relied on charity for their health care needs. After the Civil War, middle-class do-gooders moved into impoverished communities and established settlement houses, where low-income residents could get medical care and other social services. Separately, thousands of fraternal societies organized by ethnicity, religion, and age offered payments when someone was sick and covered funeral costs when he or she died. The limits of this patchwork system—the settlement houses fragmented as the social-work industry professionalized, and the fraternal societies mostly covered working-age men while excluding women, African Americans, and other ethnic minorities—helped give rise to the Progressive movement and, eventually, the New Deal and the modern-day panoply of social-insurance benefits. When President Lyndon Johnson signed Medicare and Medicaid into law in 1965, former President Harry Truman made a cameo to celebrate the state’s replacement of charities as providers of key services. “Not one of these, our citizens, should ever be abandoned to the indignity of charity,” Truman told the crowd. “Charity is indignity when you have to have it.”