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.

(Photo by Jp Valery on Unsplash)


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."

Susan Kreimer
Susan Kreimer is a New York-based freelance journalist who has followed the landscape of health care since the late 1990s, initially as a staff reporter for major daily newspapers. She writes about breakthrough studies, personal health, and the business of clinical practice. Raised in the Chicago area, she holds a B.A. in Journalism/Mass Communication and French from the University of Iowa and an M.S. from the Columbia University Graduate School of Journalism.
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The event on November 12th will explore what lies ahead for science and policy in the near-future.

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EVENT INFORMATION

________

Date

Thu Nov 12, 2020 12:00pm - 1:10pm EDT

                            


Contact

kira@goodinc.com

Location

Virtual

Hosts

LeapsMag, the Aspen Institute's Science and Society Program, and GOOD

"The Future of Science in America Summit" will dive into the high stakes ahead as we emerge from a hotly contested election, with the pandemic on the upswing.

Through rotating paired conversations with five experts from academia, industry, advocacy, and government, followed by a public Q&A, this event will explore (re)building public trust in science, the latest science and policy developments on the COVID vaccine front, and moonshots in science that deserve prioritization over the next four years.


________

Nancy Messonnier, M.D.
Director of the National Center for Immunization and Respiratory Diseases (NCIRD)

Saad Amer
Founder, Plus1Vote, a nonprofit organization dedicated to getting out the vote on issues such as climate change and equality

France Córdova, Ph.D.
Astrophysicist, past Director of the National Science Foundation, past President of Purdue University

Joseph DeRisi, Ph.D.
Professor of Biochemistry and Biophysics, University of California San Francisco and Co-President, Chan Zuckerberg Biohub

Seema Kumar
Global Head of the Office of Innovation, Global Health, and Policy Communication, Johnson & Johnson

Michelle McMurry-Heath, M.D., Ph.D.
President and CEO of the Biotechnology Innovation Organization (BIO)

This summit is co-hosted by LeapsMag, the Aspen Institute Science & Society Program, and the social impact company GOOD, with support from the Gordon and Betty Moore Foundation and the Rita Allen Foundation.

The event accompanies our recently published digital magazine, The Future of Science in America: The Election Issue.

Kira Peikoff
Kira Peikoff is a journalist whose work has appeared in The New York Times, Newsweek, Nautilus, Popular Mechanics, The New York Academy of Sciences, and other outlets. She is also the author of four suspense novels that explore controversial issues arising from scientific innovation: Living Proof, No Time to Die, Die Again Tomorrow, and Mother Knows Best. Peikoff holds a B.A. in Journalism from New York University and an M.S. in Bioethics from Columbia University. She lives in New Jersey with her husband and son.

Understanding the vulnerabilities of our own brains can help us guard against fake news.

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This article is part of the magazine, "The Future of Science In America: The Election Issue," co-published by LeapsMag, the Aspen Institute Science & Society Program, and GOOD.

Whenever you hear something repeated, it feels more true. In other words, repetition makes any statement seem more accurate. So anything you hear again will resonate more each time it's said.

Do you see what I did there? Each of the three sentences above conveyed the same message. Yet each time you read the next sentence, it felt more and more true. Cognitive neuroscientists and behavioral economists like myself call this the "illusory truth effect."

Go back and recall your experience reading the first sentence. It probably felt strange and disconcerting, perhaps with a note of resistance, as in "I don't believe things more if they're repeated!"

Reading the second sentence did not inspire such a strong reaction. Your reaction to the third sentence was tame by comparison.

Why? Because of a phenomenon called "cognitive fluency," meaning how easily we process information. Much of our vulnerability to deception in all areas of life—including to fake news and misinformation—revolves around cognitive fluency in one way or another. And unfortunately, such misinformation can swing major elections.

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Gleb Tsipursky
Dr. Gleb Tsipursky is an internationally recognized thought leader on a mission to protect leaders from dangerous judgment errors known as cognitive biases by developing the most effective decision-making strategies. A best-selling author, he wrote Resilience: Adapt and Plan for the New Abnormal of the COVID-19 Coronavirus Pandemic and Pro Truth: A Practical Plan for Putting Truth Back Into Politics. His expertise comes from over 20 years of consulting, coaching, and speaking and training as the CEO of Disaster Avoidance Experts, and over 15 years in academia as a behavioral economist and cognitive neuroscientist. He co-founded the Pro-Truth Pledge project.