“I nearly went to the hospital for the 22nd time in 7 months. As you can imagine this has depleted all of my money,” writes Tara. She continues: “My family has done so much and will help me once I’m there, but I need to move on my own…So look, I’m a responsible girl, I’ve been holding it down for 16 years while feeling like I could be taken at any time.”
Tara is running a campaign on the popular crowdfunding site GoFundMe. She has fibromyalgia and a host of complications, and needs to relocate to access health care. She started fundraising in March 2017, and a year and a half later, she’s raised less than a quarter of what she needs. She’s not alone. Medical expenses are already the leading crowdfunding cause and donations can’t keep up with demand; a 2017 study showed that 90 percent of medical crowdfunding campaigns failed to reach their goals.
The use of crowdfunding to pay not just for medical care but adjacent costs, such as lost work associated with being ill, caregiving costs for ill family members, utilities, travel and lodging costs to access care, and other externalities, is growing common. For low-income people who are under and uninsured, these cost burdens can be particularly high.
Faced with urgent financial needs, some may turn to payday lenders and other high-interest, high-risk “alternative financial services.” An increasing number are looking to crowdfunding, but Lauren S. Berliner and Nora Kenworthy at the University of Washington Bothell, authors of the 2017 study finding that these campaigns often fall short, discovered success can hinge on things like socioeconomic networks, media literacy, and the ability to translate needs into a compelling and understandable narrative. Campaign success can also be contingent on the nature of the ask; asking for help with ongoing caregiving costs, for example, is less straightforward than requesting assistance with the costs of a specific medical procedure.
Perusing crowdfunding sites reveals ample glossy, well-prepared pleas for help that are netting healthy proceeds, like “Join Oscar’s Village,” featuring a baby with acute flaccid myelitis, a brief, emotive story, and pictures of a happy family. Other campaigns have few to no donations and haven’t been optimized for an audience, like Tara’s: rambling, poorly-punctuated pleas for help, lengthy and apologetic stories, and blurry photos that don’t catch the eye of visitors. It’s a brave new world of health care financing in which those with socioeconomic privilege are better positioned for success than others.
Berliner and Kenworthy fear crowdfunding may be exacerbating socioeconomic inequalities. “Crowdfunding normalizes a means of health care financing that runs counter to a more rights-based system of values,” says Berliner.
Their work finds that crowdfunding promotes “hyper-individualized accounts of suffering” — the kind of tearjerker personal stories that get picked up in the media, like the widow of a shooting victim who needed help with his lung disease or the woman who saved her husband’s life with CPR while 39 weeks pregnant — that depend on individual ability to leverage media platforms. Crowdfunding sites themselves are also pulled into this debate as they become “an arbiter for public problems,” they say, developing the algorithms that can determine success or failure, verifying high-profile campaigns, and making decisions about what gets highlighted.
With crowdfunding occupying a growing role in the health care landscape, it should be noted that campaigners may also not be aware of the financial implications of participation, including tax liabilities or jeopardizing eligibility for need-based programs like Medicaid. Those most in need of advice on these issues may be least able to access it, lacking attorneys and accountants in their friend networks and unaware that they may need to consult a professional for advice.
The rise of medical crowdfunding demonstrates that insured and uninsured alike are struggling with health care expenses, especially among low-income people. In states without Medicaid expansion, medical debt is particularly high. Medical debt may be ubiquitous, but the amount of debt is often surprisingly small. A 2018 Health Affairs study discovered over half of medical bills sent to collections were under $600. Still, that’s much more than most Americans can pay. In 2017, the Federal Reserve found that 40 percent of people would struggle with an unexpected expense of $400 or more.
Far from being a grassroots solution to disparities in health care access, crowdfunding may just be making the problem worse by foregrounding personal responsibility over institutional accountability. It’s an extension of the argument we saw during the Affordable Care Act fight, put succinctly by Republican Representative Steve King when he said “I think a national health care act substitutes for a lack of personal responsibility.” The belief that the ACA was a handout rather than a hand up is ubiquitous among Congressional Republicans, who enjoy a comprehensive and very affordable health care plan as part of their jobs.
But more and more, we’re seeing voters disagree. Health care affordability was certainly on the minds of voters this month as they turned out to vote for Medicaid expansion in three states, Democratic governors who can drive Medicaid expansion like Laura Kelly in Kansas, and members of Congress who made health care part of their platform.
Stabilizing the Affordable Care Act and moving to protect Medicaid and Medicare may help bring some direct health care costs under control for currently vulnerable groups. This includes those in states currently without Medicaid expansions and moderate-income people who don’t qualify for subsidies or have high-deductible employer-sponsored insurance.
In the meantime, those facing high health care costs and associated expenses will have to keep turning to the internet for help. “I’m white knuckling it to California in a thyroid storm and was just told I need a biopsy now! It may be a long journey, if I have a surge it’s a hospital or hotel! Please pray and god bless you all!,” says Tara in her last update, featuring a photo of her in a hospital bed. It was posted 18 months ago.
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