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."
If any malady proves the fragile grace of the human genome, it is sickle cell disease.
If experimental treatments receive regulatory approval, it would be a watershed breakthrough for tens of thousands of Americans.
It occurs because of a single "misspelled" letter of DNA, causing red blood cells to run low on oxygen and transforming the hemoglobin in each cell into a stiff rod. Normally round cells become rigid crescents that hamper the flow of blood throughout the body, like leaves clumping in a drain.
Strokes in toddlers are merely the beginning of the circulatory calamities this disease may inflict. Most sickled cells cannot carry oxygen through the body, causing anemia as well as excruciating chronic pain. Older patients are at risk of kidney failure, heart disease and all the other collateral damage caused by poor circulation. Few live beyond middle age.
The only way to cure it has been through a bone marrow transplant from a donor, which requires not only a closely matching volunteer, but bouts of chemotherapy to allow new stem cells to take root, as well as rounds of immunosuppressive drugs that may last for years.
Recent advances in genomic medicine may soon alter the disease's outlook, although many obstacles remain.
In one treatment under development, patient's skin cells are converted into stem cells, allowing them to be inserted into the bone marrow without the need for a donor. Another treatment known as gene therapy involves replacing the aberrant gene in the patient's body with new genetic material.
Although both remain in clinical trials -- and also require at least chemotherapy -- they have shown promise. Matthew Hsieh, a hematologist and staff scientist with the National Heart Lung and Blood Institute in Maryland, has performed about 10 gene therapy procedures over the past three years as part of a clinical trial. Ongoing tweaks in the procedure have led to the blood in more recent patients showing sickle cell trait -- not a perfect outcome, but one that leaves patients with far fewer symptoms than if they have the full-blown disease.
If one or both treatments receive regulatory approval, it would be a watershed breakthrough for the tens of thousands of Americans who suffer from the disease.
Yet it is entirely possible many patients may decline the cure.
A Painful History
The vast majority of sickle cell sufferers in the U.S. -- well beyond 90 percent -- are African-American, a population with a historically uneasy relationship toward healthcare.
"There is a lot of data on distrust between African-Americans and American medical institutions," says J. Corey Williams, a psychiatrist with the Children's Hospital of Philadelphia who has written extensively on racial disparities in healthcare. "It comes from a long legacy of feeling victimized by medicine."
"What you hear from many patients is 'I am not going to be your guinea pig, and I am not going to be experimented on.'"
As a result, Williams is among several clinicians interviewed for this story who believe a cure for sickle cell disease would be embraced reluctantly.
"What you hear from many patients is 'I am not going to be your guinea pig, and I am not going to be experimented on.' And so the history of African-Americans and research will manifest as we develop gene therapies for [these] patients," says Christopher L. Edwards, a clinical psychologist and researcher with the Maya Angelou Center for Health Equity at the Wake Forest University School of Medicine.
Fear among African-Americans of becoming guinea pigs is well-founded. The first c-sections and fistula repairs occurring in North America were performed on enslaved women -- all without consent and virtually none with anesthesia.
Modern 20th century medicine led to the Tuskegee syphilis experiments conducted by the U.S. Public Health Service. Researchers withheld treatment from some 400 African-American men from the 1930s well into the 1970s to observe how they reacted to the disease -- even though curative antibiotics had been around for decades. Only news reports ended the experiment.
The long-standing distrust of American healthcare in the African-American community is also baked into the care provided to sickle cell patients. Despite affecting one in 365 African-Americans, there is no disease registry to assist clinical trials, according to Mary Hulihan, a blood disorders epidemiologist with the Centers for Disease Control and Prevention. Edwards says many sufferers are suspicious of being monitored.
Meanwhile, only two drugs are available to alleviate the worst symptoms. The first one, hydroxyurea, received FDA approval only in 1998 -- nearly 90 years after the disease was first diagnosed. Moreover, Edwards says that some sufferers shy away from using hydroxyurea because it is also used to treat cancer. It's part of what he calls the "myth and folklore" in the African-American community about sickle cell disease.
Economics plays a role as well in the often-fragmented care such patients receive. According to CDC data, many patients rely extensively on public insurance programs such as Medicaid, whose coverage varies from state to state.
A Tough Transition
Edwards notes that sickle cell sufferers usually receive good care when they're children because of support provided by family members. But that often breaks down in adulthood. According to CDC data, an adult sickle cell patient visits a hospital emergency room three times as often as a child patient.
The consensus is that the path to a medical cure for sickle cell will first need to be smoothed over with a talk cure.
Modupe Idowu, a hematologist with the University of Texas Health system, estimates that there are perhaps a dozen comprehensive care centers for the estimated 100,000 sickle cell patients in the U.S., including the one she operates in Houston. That means a significant proportion of those afflicted are on their own to procure care.
And since many patients are on Medicaid, "a lot of hematologists that train to take care of blood disorders, many are not interested in treating [sickle cell disease] because the reimbursement for providers is not great," Idowu says.
Hsieh acknowledges that many of his patients can be suspicious about the care they are receiving. Frustration with fragmented care is usually the biggest driver, he adds.
Meanwhile, the skepticism that patients have about the treatments they seek is often reciprocated by their caregivers.
"The patients have experiences with medication and know what works at a very young age (for their pain)," Edwards says. Such expertise demonstrated by an African-American patient often leads to them being labeled as narcotics seekers.
The Correct Path
This all begs the question of how to deploy a cure. Idowu, who regularly holds town hall-style meetings with Houston-area patients, often must allay anxieties. For example, the gene therapy approach uses a harmless virus to transport new genetic material into cells. That virus happens to be a benign version of HIV, and convincing patients they won't be infected with HIV is a fraught issue.
The consensus is that the path to a medical cure for sickle cell will first need to be smoothed over with a talk cure.
Idowu tries to hammer home the fact that patients are afforded vastly more protections than in the past. "There are a lot of committees and investigational review boards that keep track of clinical trials; things just don't happen anymore as they did in the past," she says. She also believes it helps if more providers of color communicate to patients.
Hsieh is very straightforward with his patients. He informs them about the HIV vector but assures them no one has ever tested positive for the virus as a result of its use.
Edwards notes that since many patients suffer psychosocial trauma as a result of their chronic pain, there already is some counseling infrastructure in place to help them cope. He believes such resources will have to be stretched further as a cure looms closer.
In the absence of formal mental health services, straight talk may be the best way to overcome wariness.
"If patients have misgivings, we try our best to address them, and let them know at the end of the day it is their decision to make," Hsieh says. "And even the patients who have gone through the gene therapy and it didn't work well -- they're still glad they took the chance."
Probiotics seem to be everywhere these days. They are marketed for numerous health issues, from irritable bowel syndrome and vaginal yeast infections to life-threatening disorders like the bacterial infection Clostridium difficile.
The new probiotic drink is made of genetically engineered bacteria meant to help people feel better the day after drinking.
While the probiotic gummies that you'll find in supermarkets may not do much for you, good clinical evidence does support the C. difficile treatment, known as a fecal transplant, despite a recent setback, and there are always new probiotic regimens entering the scene. One emerging such treatment targets the hangover.
The Lowdown
You read that right – although "hangover" is a loaded term, according to ZBiotics, the company that's developing the product. The popular understanding of a hangover implies a collection of symptoms like a headache and fatigue, many of which result simply from dehydration and low-quality sleep. But those aren't the problems that the new product, a genetically engineered form of a common bacterial species, was developed to confront.
"Dehydration and poor sleep have actually always been pretty simple to deal with by having a good breakfast and some caffeine," notes ZBiotics founder and microbiologist Zack Abbott. Instead, the product targets acetaldehyde, a chemical that accumulates in the body if more than small amounts of alcohol are consumed.
Normally, body cells produce an enzyme that converts acetaldehyde into harmless acetic acid. But the enzyme becomes overwhelmed if you drink more than a little alcohol, or if you have a certain genetic deficiency.
A new probiotic drink aims to neutralize a chemical that builds up in the body after drinking alcohol.
(Zbiotics)
"I started ZBiotics with the hypothesis that if we used edible probiotic bacteria to make enzymes, and chose applications in which the enzymes these microbes make would be useful directly in the gut after you eat them, we could create all sorts of beneficial products," says Abbott. "I started with alcohol with the idea that we can augment the body's natural ability to digest its nasty byproduct, acetaldehyde, helping people feel better the day after drinking."
Next Steps
Based on the premise that the engineered bacteria augments a natural body function, ZBiotics had the product "sampled by thousands of beta-testers," including ZBiotics personnel, with "almost unanimously positive feedback," says Abbott.
"We are working on future scientifically controlled testing for publication."
ZBiotics is to set to launch on the market next week as a probiotic supplement, a category that does not require FDA approval. But some observers are troubled over whether the new product is attempting to serve a medical function without going through the standard drug testing process.
"I am skeptical of any new alternative product that is not FDA approved, has not undergone rigorous double-blind placebo control testing and adverse effects evaluation, and cites anecdotes as evidence of its efficacy," warns Heather Berlin, a cognitive neuroscientist and assistant professor of psychiatry at Icahn School of Medicine at Mount Sinai, in New York.
Abbott acknowledges that his product still needs to undergo rigorous study. "We are working on future scientifically controlled testing for publication," he says, noting that the company was "founded and [is] run by people with backgrounds in academic research."
Open Questions
Moving beyond the need for proper testing, Berlin has an additional concern: will a "hangover"-blocking substance cause people to drink more alcohol, or mask important physiological sensations like thirst?
"If that negative feeling is obscured, they may not [rehydrate], which can cause numerous adverse effects," Berlin says.
As for excessive drinking, there is a treatment on the market that does the opposite of Zbiotics. Disulfiram, commonly given to alcohol abusers, inhibits the very enzyme that ZBiotics supplements, causing acetaldehyde to accumulate especially fast. This makes drinking a pretty miserable experience.
But Abbott says his product would not interfere with disulfiram.
"[Zbiotics] is about enjoying the special moments in life where alcohol happens to be involved, but isn't the main focus."
"Disulfiram globally inhibits the enzyme throughout the entire body, including the liver, creating a massive amount of acetaldehyde at once, making the person ill immediately and forcing them to stop drinking right away," Abbott explains, whereas his product exerts its effects in the gut, and is really only helpful the next day. Thus, timing is everything; the probiotic would not change the experience at the moment of drinking.
"ZBiotics isn't about going out and ripping shots all night," Abbott says. "It's about enjoying the special moments in life where alcohol happens to be involved, but isn't the main focus. Weddings, celebrations, weekends with friends. And wanting to do that enjoyably while being safe and responsible at the same time."