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."
Forcing Vaccination on Every Child Undermines Civil Liberties
[Editor's Note: This opinion essay is in response to our current Big Question, which we posed to experts with different viewpoints: "Where should society draw the line between requiring vaccinations for children and allowing parental freedom of choice?"]
Our children are the future. The survival of humanity is advanced by the biological imperative that mothers and fathers want and need to protect their children and other children from being harmed for any reason.
Science is not perfect, doctors are not infallible, and medical interventions come with risks.
In the 21st century, consensus science considers vaccination to be one of the greatest inventions in the history of medicine and the greatest achievement of public health programs. The national vaccination rate for U.S. kindergarten children is 94 percent and most children today receive 69 doses of 16 federally recommended vaccines. However, public health is not simply measured by high vaccination rates and absence of infectious disease, which is evidenced by the chronic inflammatory disease and disability epidemic threatening to bankrupt the U.S. health care system.
Science is not perfect, doctors are not infallible, and medical interventions come with risks, which is why parents have the power to exercise informed consent to medical risk taking on behalf of their minor children.
As a young mother, I learned that vaccine risks are 100 percent for some children because, while we are all born equal under the law, we are not born all the same. Each one of us enters this world with different genes, a unique microbiome and epigenetic influences that affect how we respond to the environments in which we live. We do not all respond the same way to infectious diseases or to pharmaceutical products like vaccines.
Few parents were aware of vaccine side effects in 1980, when my bright, healthy two-and-a-half year-old son, Chris, suffered a convulsion, collapse, and state of unconsciousness (encephalopathy) within hours of his fourth DPT shot, and then regressed physically, mentally and emotionally and became a totally different child. Chris was eventually diagnosed with multiple learning disabilities and confined to a special education classroom throughout his public school education, but he and I both know his vaccine reaction could have been much worse. Today, Chris is an independent adult but many survivors of brain injury are not.
Barbara Loe Fisher and her son, Chris, in December 1981 after his fourth DPT shot.
(Courtesy Fisher)
The public conversation about several hundred cases of measles reported in the U.S. this year is focused on whether every parent has a social obligation to vaccinate every child to maintain "community immunity," but vaccine failures are rarely discussed. Emerging science reveals that there are differences in naturally and vaccine acquired immunity, and both vaccinated and unvaccinated children and adults transmit infections, sometimes with few or no symptoms.
Nearly 40 percent of cases reported in the 2015 U.S. measles outbreak occurred in recently vaccinated individuals who developed vaccine reactions that appeared indistinguishable from measles. Outbreaks of pertussis (whooping cough) in highly vaccinated child populations have been traced to waning immunity and evolution of the B. pertussis microbe to evade the vaccines. Influenza vaccine effectiveness was less than 50 percent in 11 of the past 15 flu seasons.
Vaccine policymakers recognize that children with severe combined immune deficiency or those undergoing chemotherapy or organ transplants are at increased risk for complications of infectious diseases and vaccines. However, there is no recognition of the risks to healthy infants and children with unidentified susceptibility to vaccine reactions, including children whose health suddenly deteriorates without explanation after vaccination. Medical care is being denied to children and adults in the U.S. if even one government recommended vaccination is declined, regardless of health or vaccine reaction history.
When parents question the risks and failures of a commercial pharmaceutical product being mandated for every child, the answer is not more force but better science and respect for the informed consent ethic.
The social contract we have with each other when we live in communities, whether we belong to the majority or a minority, is to care about and protect every individual living in the community. One-size-fits-all vaccine policies and laws, which fail to respect biodiversity and force everyone to be treated the same, place an unequal risk burden on a minority of unidentified individuals unable to survive vaccination without being harmed.
A law that requires certain minorities to bear a greater risk of injury or sacrifice their lives in service to the majority is not just or moral.
Between 1991 and 2013, the Institute of Medicine (IOM) published reports documenting that vaccines can cause brain inflammation and other serious reactions, injuries and death. A 2012 IOM report acknowledged that there are genetic, biological, and environmental risk factors that make some individuals more susceptible to adverse responses to vaccines but often doctors cannot identify who they are because of gaps in vaccine science. Congress acknowledged this fact a quarter century earlier in the 1986 National Childhood Vaccine Injury Act, which created a federal vaccine injury compensation program alternative to a lawsuit that has awarded more than $4 billion to vaccine-injured children and adults.
We give up the human right to autonomy and informed consent at our peril, no matter where or in what century we live.
Vaccine manufacturers and administrators have liability protection, yet today almost no health condition qualifies for a medical vaccine exemption under government guidelines. Now, there is a global call by consensus science advocates for elimination of all personal belief vaccine exemptions and censorship of books and public conversations that criticize vaccine safety or government vaccine policy. Some are calling for quarantine of all who refuse vaccinations and criminal prosecution, fines and imprisonment of parents with unvaccinated children, as well as punishment of doctors who depart from government policy.
There is no civil liberty more fundamentally a natural, inalienable right than exercising freedom of thought and conscience when deciding when and for what reason we are willing to risk our life or our child's life. That is why voluntary, informed consent to medical risk-taking has been defined as a human right governing the ethical practice of modern medicine.
In his first Presidential inaugural address, Thomas Jefferson warned:
"All, too, will bear in mind this sacred principle, that though the will of the majority is in all cases to prevail, that will to be rightful must be reasonable; that the minority posses their equal rights, which equal law must protect, and to violate would be oppression."
The seminal 1905 U.S. Supreme Court decision, Jacobson v. Massachusetts, affirmed the constitutional authority of states to enact mandatory smallpox vaccination laws. However, the justices made it clear that implementation of a vaccination law should not become "cruel and inhuman to the last degree." They warned, "All laws, this court has said, should receive a sensible construction. General terms should be so limited in their application as not to lead to injustice, oppression, or an absurd consequence. It will always, therefore, be presumed that the legislature intended exceptions to its language, which would avoid results of this character."
Mothers and fathers, who know and love their children better than anyone else, depend upon sound science and compassionate public health policies to help them protect their own and other children from harm. If individuals susceptible to vaccine injury cannot be reliably identified, the accuracy of vaccine benefit and risk calculations must be reexamined. Yet, consensus science and medicine around vaccination discourages research into the biological mechanisms of vaccine injury and death and identification of individual risk factors to better inform public health policy.
A critic of consensus science, physician and author Michael Crichton said, "Let's be clear: the work of science has nothing whatever to do with consensus. Consensus is the business of politics. Period."
Condoning elimination of civil liberties, including freedom of speech and the right to dissent guaranteed under the First Amendment of the U.S. Constitution, to enforce vaccination creates a slippery slope. Coercion, punishment and censorship will destroy, not instill, public trust in the integrity of medical practice and public health laws.
There are more than a dozen new vaccines being fast tracked to market by industry and governments. Who in society should be given the power to force all children to use every one of them without parental consent regardless of how small or great the risk?
We give up the human right to autonomy and informed consent at our peril, no matter where or in what century we live. Just and compassionate public health laws that protect parental and human rights will include flexible medical, religious and conscientious belief vaccine exemptions to affirm the informed consent ethic and prevent discrimination against vulnerable minorities.
[Editor's Note: Read the opposite viewpoint here.]
Not Vaccinating Your Kids Endangers Public Health
[Editor's Note: This opinion essay is in response to our current Big Question, which we posed to experts with different viewpoints: "Where should society draw the line between requiring vaccinations for children and allowing parental freedom of choice?"]
Society has a right and at times an obligation to require children to be vaccinated. Vaccines are one of the most effective medical and public health interventions. They save lives and prevent suffering. The vast majority of parents in the United States fully vaccinate their children according to the recommended immunization schedule. These parents are making decisions so that the interests of their children and the interest of society are the same. There are no ethical tensions.
"Measles is only a plane ride away from American children."
A strong scientific basis supports the recommended immunization schedule. The benefits of recommended vaccines are much bigger than the risks. However, a very small proportion of parents are ideologically opposed to vaccines. A slightly larger minority of parents do not believe that all of the recommended vaccines are in their child's best interests.
Forgoing vaccinations creates risk to the child of contracting diseases. It also creates risk to communities and vulnerable groups of people who cannot be vaccinated because of their age or health status.
For example, many vaccines are not able to be given to newborns, such as the measles vaccine which is recommended at 12-15 months of age, leaving young children vulnerable. Many diseases are particularly dangerous for young children. There are also some children who can't be vaccinated, such as pediatric cancer patients who are undergoing chemotherapy or radiation treatment. These children are at increased risk of serous complication or death.
Then there are people who are vaccinated but remain susceptible to disease because no vaccine is 100% effective. In the case of measles, two doses of vaccines protect 97% of people, leaving 3% still susceptible even after being fully vaccinated. All of these groups of people – too young, not eligible, and vaccinated but still susceptible – are dependent on almost everyone else to get vaccinated in order for them to be protected.
Sadly, even though measles has been largely controlled because most people get the very safe and very effective vaccine, we are now seeing dangerous new outbreaks because some parents are refusing vaccines for their children, especially in Europe. Children have died. Measles is only a plane ride away from American children.
There have been repeated measles outbreaks in the United States – such as the Disneyland outbreak and six outbreaks already this year - because of communities where too many parents refuse the vaccine and measles is brought over, often from Europe.
The public health benefits cannot be emphasized enough: Vaccines are not just about protecting your child. Vaccines protect other children and the entire community. Vaccine-preventable diseases (with the exception of tetanus) are spread from person to person. The decision of a parent to not vaccinate their child can endanger other children and vulnerable people.
As a vaccine safety researcher for 20 years, I believe that the community benefit of vaccination can provide justification to limit parental autonomy.
Given these tensions between parental autonomy and the protective value of vaccines, the fundamental question remains: Should society require all children to submit to vaccinations? As a vaccine safety researcher for 20 years, I believe that the community benefit of vaccination can provide justification to limit parental autonomy.
In the United States, we see this balancing act though state requirements for vaccinations to enter school and the varying availability of non-medical exemptions to these laws. Mandatory vaccination in the United States are all state laws. All states require children entering school to receive vaccines and permit medical exemptions. There are a lot of differences between states regarding which vaccines are required, target populations (daycare, school entry, middle school, college), and existence and types of non-medical (religious or philosophical) exemptions that are permitted.
Amid recent measles outbreaks, for instance, California eliminated all non-medical exemptions, making it one of three states that only permit medical exemptions. The existence and enforcement of these school laws reflect broad public support for vaccines to protect the community from disease outbreaks.
I worry about how many kids must suffer, and even die, from diseases like measles until enough is enough. Such tragedies have no place in the modern era. All parents want to do right by their children. All parents deserve autonomy when it comes to decision-making. But when their choices confer serious risks to others, the buck should stop. Our nation would be better off—both medically and ethically—if we did not turn our backs on our most vulnerable individuals.
[Editor's Note: Read the opposite viewpoint here.]