As More People Crowdfund Medical Bills, Beware of Dubious Campaigns
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."
When NASA's Perseverance rover landed successfully on Mars on February 18, 2021, calling it "one giant leap for mankind" – as Neil Armstrong said when he set foot on the moon in 1969 – would have been inaccurate. This year actually marked the fifth time the U.S. space agency has put a remote-controlled robotic exploration vehicle on the Red Planet. And it was a female engineer named Donna Shirley who broke new ground for women in science as the manager of both the Mars Exploration Program and the 30-person team that built Sojourner, the first rover to land on Mars on July 4, 1997.
For Shirley, the Mars Pathfinder mission was the climax of her 32-year career at NASA's Jet Propulsion Laboratory (JPL) in Pasadena, California. The Oklahoma-born scientist, who earned her Master's degree in aerospace engineering from the University of Southern California, saw her profile skyrocket with media appearances from CNN to the New York Times, and her autobiography Managing Martians came out in 1998. Now 79 and living in a Tulsa retirement community, she still embraces her status as a female pioneer.
"Periodically, I'll hear somebody say they got into the space program because of me, and that makes me feel really good," Shirley told Leaps.org. "I look at the mission control area, and there are a lot of women in there. I'm quite pleased I was able to break the glass ceiling."
Her $25-million, 25-pound microrover – powered by solar energy and designed to get rock samples and test soil chemistry for evidence of life – was named after Sojourner Truth, a 19th-century Black abolitionist and women's rights activist. Unlike Mars Pathfinder, Shirley didn't have to travel more than 131 million miles to reach her goal, but her path to scientific fame as a woman sometimes resembled an asteroid field.
As a high-IQ tomboy growing up in Wynnewood, Oklahoma (pop. 2,300), Shirley yearned to escape. She decided to become an engineer at age 10 and took flying lessons at 15. Her extraterrestrial aspirations were fueled by Ray Bradbury's The Martian Chronicles and Arthur C. Clarke's The Sands of Mars. Yet when she entered the University of Oklahoma (OU) in 1958, her freshman academic advisor initially told her: "Girls can't be engineers." She ignored him.
Years later, Shirley would combat such archaic thinking, succeeding at JPL with her creative, collaborative management style. "If you look at the literature, you'll find that teams that are either led by or heavily involved with women do better than strictly male teams," she noted.
However, her career trajectory stalled at OU. Burned out by her course load and distracted by a broken engagement to marry a fellow student, she switched her major to professional writing. After graduation, she applied her aeronautical background as a McDonnell Aircraft technical writer, but her boss, she says, harassed her and she faced gender-based hostility from male co-workers.
Returning to OU, Shirley finished off her engineering degree and became a JPL aerodynamist in 1966 after answering an ad in the St. Louis Post-Dispatch. At first, she was the only female engineer among the research center's 2,000-odd engineers. She wore many hats, from designing planetary atmospheric entry vehicles to picking the launch date of November 4, 1973 for Mariner 10's mission to Venus and Mercury.
By the mid-1980's, she was managing teams that focused on robotics and Mars, delivering creative solutions when NASA budget cuts loomed. In 1989, the same year the Sojourner microrover concept was born, President George H.W. Bush announced his Space Exploration Initiative, including plans for a human mission to Mars by 2019.
That target, of course, wasn't attained, despite huge advances in technology and our understanding of the Martian environment. Today, Shirley believes humans could land on Mars by 2030. She became the founding director of the Science Fiction Museum and Hall of Fame in Seattle in 2004 after leaving NASA, and to this day, she enjoys checking out pop culture portrayals of Mars landings – even if they're not always accurate.
After the novel The Martian was published in 2011, which later was adapted into the hit film starring Matt Damon, Shirley phoned author Andy Weir: "You've got a major mistake in here. It says there's a storm that tries to blow the rocket over. But actually, the Mars atmosphere is so thin, it would never blow a rocket over!"
Fearlessly speaking her mind and seeking the stars helped Donna Shirley make history. However, a 2019 Washington Post story noted: "Women make up only about a third of NASA's workforce. They comprise just 28 percent of senior executive leadership positions and are only 16 percent of senior scientific employees." Whether it's traveling to Mars or trending toward gender equality, we've still got a long way to go.
Announcing March Event: "COVID Vaccines and the Return to Life: Part 1"
EVENT INFORMATION
DATE:
Thursday, March 11th, 2021 at 12:30pm - 1:45pm EST
On the one-year anniversary of the global declaration of the pandemic, this virtual event will convene leading scientific and medical experts to discuss the most pressing questions around the COVID-19 vaccines. Planned topics include the effect of the new circulating variants on the vaccines, what we know so far about transmission dynamics post-vaccination, how individuals can behave post-vaccination, the myths of "good" and "bad" vaccines as more alternatives come on board, and more. A public Q&A will follow the expert discussion.
CONTACT:
kira@goodinc.com
LOCATION:
Zoom webinar
SPEAKERS:
Dr. Paul Offit speaking at Communicating Vaccine Science.
commons.wikimedia.orgDr. Paul Offit, M.D., is the director of the Vaccine Education Center and an attending physician in infectious diseases at the Children's Hospital of Philadelphia. He is a co-inventor of the rotavirus vaccine for infants, and he has lent his expertise to the advisory committees that review data on new vaccines for the CDC and FDA.
Dr. Monica Gandhi
UCSF Health
Dr. Monica Gandhi, M.D., MPH, is Professor of Medicine and Associate Division Chief (Clinical Operations/ Education) of the Division of HIV, Infectious Diseases, and Global Medicine at UCSF/ San Francisco General Hospital.
Dr. Onyema Ogbuagu, MBBCh, FACP, FIDSA
Yale Medicine
Dr. Onyema Ogbuagu, MBBCh, is an infectious disease physician at Yale Medicine who treats COVID-19 patients and leads Yale's clinical studies around COVID-19. He ran Yale's trial of the Pfizer/BioNTech vaccine.
Dr. Eric Topol
Dr. Topol's Twitter
Dr. Eric Topol, M.D., is a cardiologist, scientist, professor of molecular medicine, and the director and founder of Scripps Research Translational Institute. He has led clinical trials in over 40 countries with over 200,000 patients and pioneered the development of many routinely used medications.
REGISTER NOW
This event is the first of a four-part series co-hosted by LeapsMag, the Aspen Institute Science & Society Program, and the Sabin–Aspen Vaccine Science & Policy Group, with generous support from the Gordon and Betty Moore Foundation and the Howard Hughes Medical Institute.
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.