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."
A woman gives a DNA sample at a Pheramor-sponsored event.
Brittany Barreto first got the idea to make a DNA-based dating platform nearly 10 years ago when she was in a college seminar on genetics. She joked that it would be called GeneHarmony.com.
Pheramor and startups, like DNA Romance and Instant Chemistry, both based in Canada, claim to match you to a romantic partner based on your genetics.
The idea stuck with her while she was getting her PhD in genetics at Baylor College of Medicine, and in March 2018, she launched Pheramor, a dating app that measures compatibility based on physical chemistry and what the company calls "social alignment."
"I wanted to use genetics and science to help people connect more. Our world is so hungry for connection," says Barreto, who serves as Pheramor's CEO.
With the direct-to-consumer genetic testing market booming, more and more companies are looking to capitalize on the promise of DNA-based services. Pheramor and startups, like DNA Romance and Instant Chemistry, both based in Canada, claim to match you to a romantic partner based on your genetics. It's an intriguing alternative to swiping left or right in hopes of finding someone you're not only physically attracted to but actually want to date. Experts say the science behind such apps isn't settled though.
For $40, Pheramor sends you a DNA kit to swab the inside of your cheek. After you mail in your sample, Pheramor analyzes your saliva for 11 different HLA genes, a fraction of the more than 200 genes that are thought to make up the human HLA complex. These genes make proteins that regulate the immune system by helping protect against invading pathogens.
It takes three to four weeks to get the results backs. In the meantime, users can still download the app and start using it before their DNA results are ready. The app asks users to link their social media accounts, which are fed into an algorithm that calculates a "social alignment." The algorithm takes into account the hashtags you use, your likes, check-ins, posts, and accounts you follow on Facebook, Twitter, and Instagram.
The DNA test results and social alignment algorithm are used to calculate a compatibility percentage between zero and 100. Barreto said she couldn't comment on how much of that score is influenced by the algorithm and how much comes from what the company calls genetic attraction. "DNA is not destiny," she says. "It's not like you're going to swab and I'll send you your soulmate."
Despite its name, Pheramor doesn't actually measure pheromones, chemicals released by animals that affect the behavior of others of the same species. That's because human pheromones have yet to be identified, though they've been discovered throughout the animal kingdom in moths, mice, rabbits, pigs, and many other insects and mammals. The HLA genes Pheramor analyzes instead are the human version of the major histocompatibility complex (MHC), a gene group found in many species.
The connection between HLA type and attraction goes back to the 1970s, when researchers found that inbred male mice preferred to mate with female mice with a different MHC rather than inbred female mice with similar immune system genes. The researchers concluded that this mating preference was linked to smell. The idea is that choosing a mate with different MHC genes gives animals an evolutionary advantage in terms of immune system defense.
The couples who had more dissimilar HLA types reported a more satisfied sex life and satisfied partnership, but it was a small effect.
In the 1990s, Swiss scientists wanted to see if body odor also had an effect on human attraction. In a famous experiment known as the "sweaty T-shirt study", they recruited 49 women to sniff sweaty, unwashed T-shirts from 44 men and put each in a box with a smelling hole and describe the odors of every shirt. The study found that women preferred the scents of T-shirts worn by men who were immunologically different from them compared to men whose HLA genes were similar to their own.
"The idea is, if you are very similar with your partner in HLA type then your offspring is similar in terms of HLA. This reduces your resistance against pathogens," says Illona Croy, a psychologist at the Technical University of Dresden who has studied HLA type in relation to sexual attraction in humans.
In a 2016 study Pheramor cites on its website, Croy and her colleagues tested the HLA types of 250 couples—all of them university students—and asked them how satisfied they were with their partnerships, with their sex lives, and with the odors of their partners. The couples who had more dissimilar HLA types reported a more satisfied sex life and satisfied partnership, but Croy cautions that it was a small effect. "It's not like they were super satisfied or not satisfied at all. It's a slight difference," she says.
Croy says we're much more likely to choose a partner based on appearance, sense of humor, intelligence and common interests.
Other studies have reported no preference for HLA difference in sexual attraction. Tristram Wyatt, a zoologist at the University of Oxford in the U.K. who studies animal pheromones, says it's been difficult to replicate the original T-shirt study. And one of the caveats of the original study is that women who were taking birth control pills preferred men who were more immunologically similar.
"Certainly, we learn to really like the smell of our partners," Wyatt says. "Whether it's the reason for choosing them in the first place, we really don't know."
Wyatt says he's skeptical of DNA-based dating apps because there are many subtypes of HLA genes, meaning there's a fairly low chance that your HLA type and your romantic partner's would be an exact match, anyway. It's why finding a suitable match for a bone marrow transplant is difficult; a donor's HLA type has to be the same as the recipient's.
"What it means is that since we're all different, it's hard statistically to say who the best match will be," he says.
DNA-based dating apps haven't yet gone mainstream, but some people seem willing to give them a try. Since Pheramor's launch a little over a year ago, about 10,000 people have signed up to use the app, about half of which have taken the DNA test, Barreto says. By comparison, an estimated 50 million people use Tinder, which has been around since 2012, and about 40 million people are on Bumble, which was released in 2014.
In April, Barreto launched a second service, this one for couples, called WeHaveChemistry.com. A $139 kit includes two genetic tests, one for you and your partner, and a detailed DNA report on your sexual compatibility.
Unlike the Phermor app, WeHaveChemistry doesn't provide users with a numeric combability score but instead makes personalized recommendations based on your genetic results. For instance, if the DNA test shows that your HLA genes are similar, Barreto says, "We might recommend pheromone colognes, working out together, or not showering before bed to get your juices running."
Despite her own research on HLA and sexual compatibility, Croy isn't sure how knowing HLA type will help couples. However, some researchers are doing studies on whether HLA types are related to certain cases of infertility, and this is where a genetic test might be very useful, says Croy.
"Otherwise, I think it doesn't matter whether we're HLA compatible or not," she says. "It might give you one possible explanation about why your sexual life isn't as satisfactory as it could be, but there are many other factors that play a role."
On left, the fungus (the whitish, fluffy material) of the Fungi Mutarium growing within the agar cups and degrading the plastic (the black/gray material in the center).
Between the ever-growing Great Pacific Garbage Patch, the news that over 90% of plastic isn't recycled, and the likely state of your personal trash can, it's clear that the world has a plastic problem.
Scientists around the world have continued to discover different types of fungus that can degrade specific types of plastic.
We now have 150 million tons of plastic in our oceans, according to estimates; by 2050, there could be more plastic than fish. And every new batch of trash compounds the issue: Plastic is notorious for its longevity and resistance to natural degradation.
The Lowdown
Enter the humble mushroom. In 2011, Yale students made headlines with the discovery of a fungus in Ecuador, Pestalotiopsis microspora, that has the ability to digest and break down polyurethane plastic, even in an air-free (anaerobic) environment—which might even make it effective at the bottom of landfills. Although the professor who led the research trip cautioned for moderate expectations, there's an undeniable appeal to the idea of a speedier, cleaner, side effect-free, and natural method of disposing of plastic.
A few years later, this particular application for fungus got a jolt of publicity from designer Katharina Unger, of LIVIN Studio, when she collaborated with the microbiology faculty at Utrecht University to create a project called the Fungi Mutarium. They used the mycelium—which is the threadlike, vegetative part of a mushroom—of two very common types of edible mushrooms, Pleurotus ostreatus (Oyster mushrooms) and Schizophyllum commune (Split gill mushrooms). Over the course of a few months, the fungi fully degraded small pieces of plastic while growing around pods of edible agar. The result? In place of plastic, a small mycelium snack.
Other researchers have continued to tackle the subject. In 2017, scientist Sehroon Khan and his research team at the World Agroforestry Centre in Kunming, China discovered another biodegrading fungus in a landfill in Islamabad, Pakistan: Aspergillus tubingensis, which turns out to be capable of colonizing polyester polyurethane (PU) and breaking it down it into smaller pieces within the span of two months. (PU often shows up in the form of packing foam—the kind of thing you might find cushioning a microwave or a new TV.)
Next Up
Utrecht University has continued its research, and scientists around the world have continued to discover different types of fungus that can degrade different, specific types of plastic. Khan and his team alone have discovered around 50 more species since 2017. They are currently working on finding the optimal conditions of temperature and environment for each strain of fungus to do its work.
Their biggest problem is perhaps the most common obstacle in innovative scientific research: Cash. "We are developing these things for large-scale," Khan says. "But [it] needs a lot of funding to get to the real application of plastic waste." They plan to apply for a patent soon and to publish three new articles about their most recent research, which might help boost interest and secure more grants.
Is there a way to get the fungi to work faster and to process bigger batches?
Khan's team is working on the breakdown process at this point, but researchers who want to continue in Unger's model of an edible end product also need to figure out how to efficiently and properly prepare the plastic input. "The fungi is sensitive to infection from bacteria," Unger says—which could turn it into a destructive mold. "This is a challenge for industrialization—[the] sterilization of the materials, and making the fungi resistant, strong, and faster-growing, to allow for a commercial process."
Open Questions
Whether it's Khan's polyurethane-chomping fungus or the edible agar pods from the Fungi Mutarium, the biggest question is still about scale. Both projects took several months to fully degrade a small amount of plastic. That's much shorter than plastic's normal lifespan, but still won't be enough to keep up with the global production of plastic. Is there a way to get the fungi to work faster and to process bigger batches?
We'd also need to figure out where these plastic recyclers would live. Could individuals keep a small compost-like heap, feeding in their own plastic and harvesting the mushrooms? Or could this be a replacement for local recycling centers?
There are still only these few small experiments for reference. But taken together, they suggest a fascinating future for waste disposal: An army of mycelium chewing quietly and methodically through our plastic bags and foam coffee cups—and potentially even creating a new food source along the way. We could have our trash and eat it, too.