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."
Schmidt Ocean Institute co-founder Wendy Schmidt is backed by 32 screens in research vessel Falkor's control room where most of the science takes place on the ship, from mapping to live streaming of underwater robotic dives.
WENDY SCHMIDT is a philanthropist and investor who has spent more than a dozen years creating innovative non-profit organizations to solve pressing global environmental and human rights issues. Recognizing the human dependence on sustaining and protecting our planet and its people, Wendy has built organizations that work to educate and advance an understanding of the critical interconnectivity between the land and the sea. Through a combination of grants and investments, Wendy's philanthropic work supports research and science, community organizations, promising leaders, and the development of innovative technologies. Wendy is president of The Schmidt Family Foundation, which she co-founded with her husband Eric in 2006. They also co-founded Schmidt Ocean Institute and Schmidt Futures.
Editors: The pandemic has altered the course of human history and the nature of our daily lives in equal measure. How has it affected the focus of your philanthropy across your organizations? Have any aspects of the crisis in particular been especially galvanizing as you considered where to concentrate your efforts?
Wendy: The COVID-19 pandemic has made the work of our philanthropy more relevant than ever. If anything, the circumstances of this time have validated the focus we have had for nearly 15 years. We support the need for universal access to clean, renewable energy, healthy food systems, and the dignity of human labor and self-determination in a world of interconnected living systems on land and in the Ocean we are only beginning to understand.
When you consider the disproportionate impact of the COVID-19 virus on people who are poorly paid, poorly housed, with poor nutrition and health care, and exposed to unsafe conditions in the workplace—you see clearly how the systems that have been defining how we live, what we eat, who gets healthcare and what impacts the environment around us—need to change.
"This moment has propelled broad movements toward open publication and open sharing of data and samples—something that has always been a core belief in how we support and advance science."
If the pandemic teaches us anything, we learn what resilience looks like, and the essential role for local small businesses including restaurants, farms and ranches, dairies and fish markets in the long term vitality of communities. There is resonance, local economic benefit, and also accountability in these smaller systems, with shorter supply chains and less vertical integration.
The consolidation of vertically integrated business operations for the sake of global efficiency reveals its essential weakness when supply chains break down and the failure to encourage local economic centers leads to intense systemic disruption and the possibility of collapse.
Editors: For scientists, one significant challenge has been figuring out how to continue research, if at all, during this time of isolation and distancing. Yet, your research vessel Falkor, of the Schmidt Ocean Institute, is still on its expedition exploring the Coral Sea Marine Park in Australia—except now there are no scientists onboard. What was the vessel up to before the pandemic hit? Can you tell us more about how they are continuing to conduct research from afar now and how that's going?
Wendy: We have been extremely fortunate at Schmidt Ocean Institute. When the pandemic hit in March, our research vessel, Falkor, was already months into a year-long program to research unexplored deep sea canyons around Australia and at the Great Barrier Reef. We were at sea, with an Australian science group aboard, carrying on with our mission of exploration, discovery and communication, when we happened upon what we believe to be the world's longest animal—a siphonophore about 150 feet long, spiraling out at a depth of about 2100 feet at the end of a deeper dive in the Ningaloo Canyon off Western Australia. It was the kind of wondrous creature we find so often when we conduct ROV dives in the world's Ocean.
For more than two months this year, Falkor was reportedly the only research vessel in the world carrying on active research at sea. Once we were able to dock and return the science party to shore, we resumed our program at sea offering a scheduled set of now land-based scientists in lockdown in Australia the opportunity to conduct research remotely, taking advantage of the vessel's ship to shore communications, high resolution cameras and live streaming video. It's a whole new world, and quite wonderful in its own way.
Editors: Normally, 10–15 scientists would be aboard such a vessel. Is "remote research" via advanced video technology here to stay? Are there any upsides to this "new normal"?
Wendy: Like all things pandemic, remote research is an adaptation for what would normally occur. Since we are putting safety of the crew and guest scientists at the forefront, we're working to build strong remote connections between our crew, land based scientists and the many robotic tools on board Falkor. There's no substitute for in person work, but what we've developed during the current cruise is a pretty good and productive alternative in a crisis. And what's important is that this critical scientific research into the deep sea is able to continue, despite the pandemic on land.
Editors: Speaking of marine expeditions, you've sponsored two XPRIZE competitions focused on ocean health. Do you think challenge prizes could fill gaps of the global COVID-19 response, for example, to manufacture more testing kits, accelerate the delivery of PPE, or incentivize other areas of need?
Wendy: One challenge we are currently facing is that innovations don't have the funding pathway to scale, so promising ideas by entrepreneurs, researchers, and even major companies are being developed too slowly. Challenge prizes help raise awareness for problems we are trying to solve and attract new people to help solve those problems by giving them a pathway to contribute.
One idea might be for philanthropy to pair prizes and challenges with an "advanced market commitment" where the government commits to a purchase order for the innovation if it meets a certain test. That could be deeply impactful for areas like PPE and the production of testing kits.
Editors: COVID-19 testing, especially, has been sorely needed, here in the U.S. and in developing countries as well as low-income communities. That's why we're so intrigued by your Schmidt Science Fellows grantee Hal Holmes and his work to repurpose a new DNA technology to create a portable, mobile test for COVID-19. Can you tell us about that work and how you are supporting it?
Wendy: Our work with Conservation X Labs began years ago when our foundation was the first to support their efforts to develop a handheld DNA barcode sensor to help detect illegally imported and mislabeled seafood and timber products. The device was developed by Hal Holmes, who became one of our Schmidt Science Fellows and is the technical lead on the project, working closely with Conservation X Labs co-founders Alex Deghan and Paul Bunje. Now, with COVID-19, Hal and team have worked with another Schmidt Science Fellow, Fahim Farzardfard, to repurpose the technology—which requires no continuous power source, special training, or a lab—to serve as a mobile testing device for the virus.
The work is going very well, manufacturing is being organized, and distribution agreements with hospitals and government agencies are underway. You could see this device in use within a few months and have testing results within hours instead of days. It could be especially useful in low-income communities and developing countries where access to testing is challenging.
Editors: How is Schmidt Futures involved in the development of information platforms that will offer productive solutions?
Wendy: In addition to the work I've mentioned, we've also funded the development of tech-enabled tools that can help the medical community be better prepared for the ongoing spike of COVID cases. For example, we funded EdX and Learning Agency to develop an online training to help increase the number of medical professionals who can operate ventilators. The first course is being offered by Harvard University, and so far, over 220,000 medical professionals have enrolled. We have also invested in informational platforms that make it easier to contain the spread of the disease, such as our work with Recidiviz to model the impact of COVID-19 in prisons and outline policy steps states could take to limit the spread.
Information platforms can also play a big part pushing forward scientific research into the virus. For example, we've funded the UC Santa Cruz Virus Browser, which allows researchers to examine each piece of the virus and see the proteins it creates, the interactions in the host cell, and — most importantly — almost everything the recent scientific literature has to say about that stretch of the molecule.
Editors: The scale of research collaboration and the speed of innovation today seem unprecedented. The whole science world has turned its attention to combating the pandemic. What positive big-picture trends do you think or hope will persist once the crisis eventually abates?
Wendy: As in many areas, the COVID crisis has accelerated trends in the scientific world that were already well underway. For instance, this moment has propelled broad movements toward open publication and open sharing of data and samples—something that has always been a core belief in how we support and advance science.
We believe collaboration is an essential ingredient for progress in all areas. Early in this pandemic, Schmidt Futures held a virtual gathering of 160 people across 70 organizations in philanthropy, government, and business interested in accelerating research and response to the virus, and thought at the time, it's pretty amazing this kind of thing doesn't go all the time. We are obviously going to go farther together than on our own...
My husband, Eric, has observed that in the past two months, we've all catapulted 10 years forward in our use of technology, so there are trends already underway that are likely accelerated and will become part of the fabric of the post-COVID world—like working remotely; online learning; increased online shopping, even for groceries; telemedicine; increasing use of AI to create smarter delivery systems for healthcare and many other applications in a world that has grown more virtual overnight.
"Our deepest hope is that out of these alarming and uncertain times will come a renewed appreciation for the tools of science, as they help humans to navigate a world of interconnected living systems, of which viruses are a large part."
We fully expect these trends to continue and expand across the sciences, sped up by the pressures of the health crisis. Schmidt Ocean Institute and Schmidt Futures have been pressing in these directions for years, so we are pleased to see the expansions that should help more scientists work productively, together.
Editors: Trying to find the good amid a horrible crisis, are there any other new horizons in science, philanthropy, and/or your own work that could transform our world for the better that you'd like to share?
Wendy: Our deepest hope is that out of these alarming and uncertain times will come a renewed appreciation for the tools of science, as they help humans to navigate a world of interconnected living systems, of which viruses are a large part. The more we investigate the Ocean, the more we look deeply into what lies in our soils and beneath them, the more we realize we do not know, and moreover, how vulnerable humanity is to the forces of the natural world.
Philanthropy has an important role to play in influencing how people perceive our place in the world and understand the impact of human activity on the rest of the planet. I believe it's philanthropy's role to take risks, to invest early in innovative technologies, to lead where governments and industry aren't ready to go yet. We're fortunate at this time to be able to help those working on tools to better diagnose and treat the virus, and to invest in those working to improve information systems, so citizens and policy makers can make better decisions that can reduce impacts on families and institutions.
From all we know, this isn't likely to be the last pandemic the world will see. It's been said that a crisis comes before change, and we would hope that we can play a role in furthering the work to build systems that are resilient—in information, energy, agriculture and in all the ways we work, recreate, and use the precious resources of our planet.
[This article was originally published on June 8th, 2020 as part of a standalone magazine called GOOD10: The Pandemic Issue. Produced as a partnership among LeapsMag, The Aspen Institute, and GOOD, the magazine is available for free online.]
Kira Peikoff was the editor-in-chief of Leaps.org from 2017 to 2021. As a journalist, her 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 two young sons. Follow her on Twitter @KiraPeikoff.
Dr. Barry Marshall (along with a collaborator) discovered that the bacteria H. Pylori, pictured, caused stomach ulcers.
[Editor's Note: Welcome to Leaps of the Past, a new monthly column that spotlights the fascinating backstory behind a medical or scientific breakthrough from history.]
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Until about 40 years ago, ulcers were a mysterious – and sometimes deadly – ailment. Found in a person's stomach lining or intestine, ulcers are small sores that cause a variety of painful symptoms, such as vomiting, a burning or aching sensation, internal bleeding and stomach obstruction. Patients with ulcers suffered for years without a cure and sometimes even needed their stomachs completely removed to rid them from pain.
"To gastroenterologists, the concept of a germ causing ulcers was like saying the Earth is flat."
In the early 1980s, the majority of scientists thought that ulcers were caused by stress or poor diet. But a handful of scientists had a different theory: They believed that ulcers were caused by a corkscrew-shaped bacterium called Helicobacter pylori, or H. pylori for short. Robin Warren, a pathologist, and Barry Marshall, an internist, were the two pioneers of this theory, and the two teamed up to study H. pylori at the Royal Perth Hospital in 1981.
The pair started off by trying to culture the bacteria in the stomachs of patients with gastritis, an inflammation of the stomach lining and a precursor to developing an ulcer. Initially, the microbiologists involved in their clinical trial found no trace of the bacteria from patient samples – but after a few weeks, the microbiologists discovered that their lab techs had been throwing away the cultures before H. pylori could grow. "After that, we let the cultures grow longer and found 13 patients with duodenal ulcer," said Marshall in a later interview. "All of them had the bacteria."
Marshall and Warren also cultured H. pylori in the stomachs of patients with stomach cancer. They observed that "everybody with stomach cancer developed it on a background of gastritis. Whenever we found a person without Helicobacter, we couldn't find gastritis either." Marshall and Warren were convinced that H. pylori not only caused gastritis and peptic ulcers, but stomach cancer as well.
But when the team presented their findings at an annual meeting of the Royal Australasian College of Physicians in Perth, they were mostly met with skepticism. "To gastroenterologists, the concept of a germ causing ulcers was like saying the Earth is flat," Marshall said. "The idea was too weird."
Warren started treating his gastritis patients with antibiotics with great success – but other internists remained doubtful, continuing to treat their patients with antacids instead. Making matters more complicated, neither Warren nor Marshall could readily test their theory, since the pair only had lab mice at their disposal and H. pylori infects only humans and non-human primates, such as rhesus monkeys.
So Marshall took an unconventional approach. First, he underwent two tests to get a baseline reading of his stomach, which showed no presence of H. pylori. Then, Marshall took some H. pylori bacteria from a petri dish, mixed it with beef extract to create a broth, and gulped it down. If his theory was correct, a second gastric biopsy would show that his stomach was overrun with H. pylori bacteria, and a second endoscopy would show a painfully inflamed stomach – gastritis.
Less than a week later, Marshall started feeling sick. "I expected to develop an asymptomatic infection," he later said in an interview published in the Canadian Journal of Gastroenterology. "… [but] after five days, I started to have bloating and fullness after the evening meal, and my appetite decreased. My breath was bad and I vomited clear watery liquid, without acid, each morning."
At his wife's urging, Marshall started on a regimen of antibiotics to kill off the burgeoning bacteria, so a follow-up biopsy showed no signs of H. pylori. A follow-up endoscopy, however, showed "severe active gastritis" along with epithelial damage. This was the smoking gun other clinicians needed to believe that H. pylori caused gastritis and stomach cancer. When they began to treat their gastritis patients with antibiotics, the rate of peptic ulcers in the Australian population diminished by 70 percent.
Today, antibiotics are the standard of care for anyone afflicted with gastritis.
In 2005, Marshall and Warren were awarded the Nobel Prize in Physiology or Medicine for their discovery of H. Pylori and its role in developing gastritis and peptic ulcers. "Thanks to the pioneering discovery by Marshall and Warren, peptic ulcer disease is no longer a chronic, frequently disabling condition, but a disease that can be cured by a short regimen of antibiotics and acid secretion inhibitors," the Nobel Prize Committee said.
Today, antibiotics are the standard of care for anyone afflicted with gastritis – and stomach cancer has been significantly reduced in the Western world.