As More People Crowdfund Medical Bills, Beware of Dubious Campaigns
Individuals seeking funding for experimental therapies may enroll in legitimate clinical trials -- or fall prey to snake oil.
Nearly a decade ago, Jamie Anderson hit his highest weight ever: 618 pounds. Depression drove him to eat and eat. He tried all kinds of diets, losing and regaining weight again and again. Then, four years ago, a friend nudged him to join a gym, and with a trainer's guidance, he embarked on a life-altering path.
Ethicists become particularly alarmed when medical crowdfunding appeals are for scientifically unfounded and potentially harmful interventions.
"The big catalyst for all of this is, I was diagnosed as a diabetic," says Anderson, a 46-year-old sales associate in the auto care department at Walmart. Within three years, he was down to 276 pounds but left with excess skin, which sagged from his belly to his mid-thighs.
Plastic surgery would cost $4,000 more than the sum his health insurance approved. That's when Anderson, who lives in Cabot, Arkansas, a suburb outside of Little Rock, turned to online crowdfunding to raise money. In a few months last year, current and former co-workers and friends of friends came up with that amount, covering the remaining expenses for the tummy tuck and overnight hospital stay.
The crowdfunding site that he used, CoFund Health, aimed to give his donors some peace of mind about where their money was going. Unlike GoFundMe and other platforms that don't restrict how donations are spent, Anderson's funds were loaded on a debit card that only worked at health care providers, so the donors "were assured that it was for medical bills only," he says.
CoFund Health was started in January 2019 in response to concerns about the legitimacy of many medical crowdfunding campaigns. As crowdfunding for health-related expenses has gained more traction on social media sites, with countless campaigns seeking to subsidize the high costs of care, it has given rise to some questionable transactions and legitimate ethical concerns.
Common examples of alleged fraud have involved misusing the donations for nonmedical purposes, feigning or embellishing the story of one's own unfortunate plight or that of another person, or impersonating someone else with an illness. Ethicists become particularly alarmed when medical crowdfunding appeals are for scientifically unfounded and potentially harmful interventions.
About 20 percent of American adults reported giving to a crowdfunding campaign for medical bills or treatments, according to a survey by AmeriSpeak Spotlight on Health from NORC, formerly called the National Opinion Research Center, a non-partisan research institution at the University of Chicago. The self-funded poll, conducted in November 2019, included 1,020 interviews with a representative sample of U.S. households. Researchers cited a 2019 City University of New York-Harvard study, which noted that medical bills are the most common basis for declaring personal bankruptcy.
Some experts contend that crowdfunding platforms should serve as gatekeepers in prohibiting campaigns for unproven treatments. Facing a dire diagnosis, individuals may go out on a limb to try anything and everything to prolong and improve the quality of their lives.
They may enroll in well-designed clinical trials, or they could fall prey "to snake oil being sold by people out there just making a buck," says Jeremy Snyder, a health sciences professor at Simon Fraser University in British Columbia, Canada, and the lead author of a December 2019 article in The Hastings Report about crowdfunding for dubious treatments.
For instance, crowdfunding campaigns have sought donations for homeopathic healing for cancer, unapproved stem cell therapy for central nervous system injury, and extended antibiotic use for chronic Lyme disease, according to an October 2018 report in the Journal of the American Medical Association.
Ford Vox, the lead author and an Atlanta-based physician specializing in brain injury, maintains that a repository should exist to monitor the outcomes of experimental treatments. "At the very least, there ought to be some tracking of what happens to the people the funds are being raised for," he says. "It would be great for an independent organization to do so."
"Even if it appears like a good cause, consumers should still do some research before donating to a crowdfunding campaign."
The Federal Trade Commission, the national consumer watchdog, cautions online that "it might be impossible for you to know if the cause is real and if the money actually gets to the intended recipient." Another caveat: Donors can't deduct contributions to individuals on tax returns.
"Even if it appears like a good cause, consumers should still do some research before donating to a crowdfunding campaign," says Malini Mithal, associate director of financial practices at the FTC. "Don't assume all medical treatments are tested and safe."
Before making any donation, it would be wise to check whether a crowdfunding site offers some sort of guarantee if a campaign ends up being fraudulent, says Kristin Judge, chief executive and founder of the Cybercrime Support Network, a Michigan-based nonprofit that serves victims before, during, and after an incident. They should know how the campaign organizer is related to the intended recipient and note whether any direct family members and friends have given funds and left supportive comments.
Donating to vetted charities offers more assurance than crowdfunding that the money will be channeled toward helping someone in need, says Daniel Billingsley, vice president of external affairs for the Oklahoma Center of Nonprofits. "Otherwise, you could be putting money into all sorts of scams." There is "zero accountability" for the crowdfunding site or the recipient to provide proof that the dollars were indeed funneled into health-related expenses.
Even if donors may have limited recourse against scammers, the "platforms have an ethical obligation to protect the people using their site from fraud," says Bryanna Moore, a postdoctoral fellow at Baylor College of Medicine's Center for Medical Ethics and Health Policy. "It's easy to take advantage of people who want to be charitable."
There are "different layers of deception" on a broad spectrum of fraud, ranging from "outright lying for a self-serving reason" to publicizing an imaginary illness to collect money genuinely needed for basic living expenses. With medical campaigns being a top category among crowdfunding appeals, it's "a lot of money that's exchanging hands," Moore says.
The advent of crowdfunding "reveals and, in some ways, reinforces a health care system that is totally broken," says Jessica Pierce, a faculty affiliate in the Center for Bioethics and Humanities at the University of Colorado Anschutz Medical Campus in Denver. "The fact that people have to scrounge for money to get life-saving treatment is unethical."
Crowdfunding also highlights socioeconomic and racial disparities by giving an unfair advantage to those who are social-media savvy and capable of crafting a compelling narrative that attracts donors. Privacy issues enter into the picture as well, because telling that narrative entails revealing personal details, Pierce says, particularly when it comes to children, "who may not be able to consent at a really informed level."
CoFund Health, the crowdfunding site on which Anderson raised the money for his plastic surgery, offers to help people write their campaigns and copy edit for proper language, says Matthew Martin, co-founder and chief executive officer. Like other crowdfunding sites, it retains a few percent of the donations for each campaign. Martin is the husband of Anderson's acquaintance from high school.
So far, the site, which is based in Raleigh, North Carolina, has hosted about 600 crowdfunding campaigns, some completed and some still in progress. Campaigns have raised as little as $300 to cover immediate dental expenses and as much as $12,000 for cancer treatments, Martin says, but most have set a goal between $5,000 and $10,000.
Whether or not someone's campaign is based on fact or fiction remains for prospective donors to decide.
The services could be cosmetic—for example, a breast enhancement or reduction, laser procedures for the eyes or skin, and chiropractic care. A number of campaigns have sought funding for transgender surgeries, which many insurers consider optional, he says.
In July 2019, a second site was hatched out of pet owners' requests for assistance with their dogs' and cats' medical expenses. Money raised on CoFund My Pet can only be used at veterinary clinics. Martin says the debit card would be declined at other merchants, just as its CoFund Health counterpart for humans will be rejected at places other than health care facilities, dental and vision providers, and pharmacies.
Whether or not someone's campaign is based on fact or fiction remains for prospective donors to decide. If a donor were to regret a transaction, he says the site would reach out to the campaign's owner but ultimately couldn't force a refund, Martin explains, because "it's hard to chase down fraud without having access to people's health records."
In some crowdfunding campaigns, the individual needs some or all the donated resources to pay for travel and lodging at faraway destinations to receive care, says Snyder, the health sciences professor and crowdfunding report author. He suggests people only give to recipients they know personally.
"That may change the calculus a little bit," tipping the decision in favor of donating, he says. As long as the treatment isn't harmful, the funds are a small gesture of support. "There's some value in that for preserving hope or just showing them that you care."
This month, Matt Fuchs becomes the new Editor-in-Chief of Leaps.org.
This month, Kira Peikoff passes the torch to me as editor-in-chief of Leaps.org. I’m excited to assume leadership of this important platform.
Leaps.org caught my eye back in 2018. I was in my late 30s and just starting to wake up to the reality that the people I care most about were getting older and more vulnerable to health problems. At the same time, three critical shifts were becoming impossible to ignore. First, the average age in the U.S. is getting older, a trend known as the “gray tsunami.” Second, healthcare expenses are escalating and becoming unsustainable. And third, our sedentary, stress-filled lifestyles are leading to devastating consequences.
These trends pointed to a future filled with disease, suffering and economic collapse. But whenever I visited Leaps.org, my outlook turned from gloomy to solution-oriented. I became just as fascinated in a fourth trend, one that stands to revolutionize our world: rapid, mind-bending innovations in health and medicine.
Brain atlases, genome sequencing and editing, AI, protein mapping, synthetic biology, 3-D printing—these technologies are yielding new opportunities for health, longevity and human thriving. COVID-19 has caused many setbacks, but it has accelerated scientific breakthroughs. History suggests we will see even more innovation—in digital health and virtual first care, for example—after the pandemic.
In 2020, I began covering these developments with articles for Leaps.org about clocks that measure biological aging, gene therapies for cystic fibrosis, and other seemingly futuristic concepts that are transforming the present. I wrote about them partly because I think most people aren’t aware of them—and meaningful progress can’t happen without public engagement. A broader set of stakeholders and society at large, not just the experts, must inform these changes to ensure that they reflect our values and ethics. Everyone should get the chance to participate in the conversation—and they must have the opportunity to benefit equally from the innovations we decide to move forward with. By highlighting cutting-edge advances, Leaps.org is helping to realize this important goal.
Meanwhile, as I wrote freelance pieces on health and wellness for outlets such as the Washington Post and Time Magazine, I kept seeing an intersect between the breakthroughs in research labs and our expanding knowledge about the science of well-being. Take, for example, emerging technologies designed to stop illnesses in their tracks and new research on the benefits of taking in natural daylight. These two areas, lab innovations and healthy lifestyles, both shift the focus from disease treatment to disease prevention and optimal health. It’s the only sensible, financially feasible way forward.
When Kira suggested that I consider a leadership role with Leaps.org, it struck me how much the platform’s ideals have informed my own perspectives. The frontpage gore of mainstream media outlets can feel like a daily dose of pessimism, with cynicism sometimes dressed up as wisdom. Leaps.org’s world view is rooted in something very different: rational optimism about the present moment and the possibility of human flourishing.
That’s why I’m proud to lead this platform, including our podcast, Making Sense of Science, and hope you’ll keep coming to Leaps.org to learn and join the conversation about scientific gamechangers through our sponsored events, our popular Instagram account and other social channels. Think critically about the breakthroughs and their ethical challenges. Help usher in the health and prosperity that could be ours if we stay open-minded to it.
Yours truly,
Matt Fuchs
Editor-in-Chief
Podcast: Trusting Science with Dr. Sudip Parikh, CEO of AAAS
The "Making Sense of Science" podcast features interviews with leading experts about health innovations and the big ethical and social questions they raise. The podcast is hosted by Matt Fuchs, editor of the award-winning science outlet Leaps.org.
As Pew research showed last month, many Americans have less confidence in science these days - our collective trust has declined to levels below when the pandemic began. But leaders like Dr. Sudip Parikh are taking important steps to more fully engage people in scientific progress, including breakthroughs that could benefit health and prevent disease. In January 2020, Sudip became the 19th Chief Executive Officer of the American Association for the Advancement of Science (AAAS), an international nonprofit that seeks to advance science, engineering and innovation throughout the world, with 120,000 members in 91 countries. He is the executive publisher of Science, one of the top academic journals in the world, and the Science family of journals.
Listen to the episode
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In this episode, Sudip and I talk about:
- Reasons to be excited about health innovations that could come to fruition in the next several years.
- Sudip's thoughts about areas of health innovation where we should be especially cautious.
- Strategies for scientists and journalists to instill greater trust in science.
- How to tap into and nurture kids' passion for STEM subjects.
- The best roles for experts to play in society and the challenges they face.
And we pack several other fascinating topics into our 35 minutes. Here are links to check out and learn more about Sudip Parikh and AAAS:
- Sudip Parikh's official bio - https://www.aaas.org/person/sudip-parikh
- Sudip Parikh, Why We Must Rebuild Trust in Science, Trend Magazine, Feb. 9, 2021 - https://www.pewtrusts.org/en/trend/archive/winter-...
- Follow Sudip on Twitter - https://twitter.com/sudipsparikh
- AAAS website - https://www.aaas.org/
- AAAS podcast - https://www.science.org/podcasts
- The latest issue of Science - https://www.science.org/
- Science Journals homepage - https://www.science.org/journals
- AAAS Mentor Resources - https://www.aaas.org/stemmentoring
- AAAS Science Journalism Awards - https://sjawards.aaas.org/enter
- Pew Research Center Report, Americans' Trust in Scientists, Other Groups Declines, Feb. 15, 2022 https://www.pewresearch.org/science/2022/02/15/ame...