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."
Abortions Before Fetal Viability Are Legal: Might Science and the Change on the Supreme Court Undermine That?
The United States Supreme Court Building in Washington, D.C.
This article is part of the magazine, "The Future of Science In America: The Election Issue," co-published by LeapsMag, the Aspen Institute Science & Society Program, and GOOD.
Viability—the potential for a fetus to survive outside the womb—is a core dividing line in American law. For almost 50 years, the Supreme Court of the United States has struck down laws that ban all or most abortions, ruling that women's constitutional rights include choosing to end pregnancies before the point of viability. Once viability is reached, however, states have a "compelling interest" in protecting fetal life. At that point, states can choose to ban or significantly restrict later-term abortions provided states allow an exception to preserve the life or health of the mother.
This distinction between a fetus that could survive outside its mother's body, albeit with significant medical intervention, and one that could not, is at the heart of the court's landmark 1973 decision in Roe v. Wade. The framework of viability remains central to the country's abortion law today, even as some states have passed laws in the name of protecting women's health that significantly undermine Roe. Over the last 30 years, the Supreme Court has upheld these laws, which have the effect of restricting pre-viability abortion access, imposing mandatory waiting periods, requiring parental consent for minors, and placing restrictions on abortion providers.
Viability has always been a slippery notion on which to pin legal rights.
Today, the Guttmacher Institute reports that more than half of American women live in states whose laws are considered hostile to abortion, largely as a result of these intrusions on pre-viability abortion access. Nevertheless, the viability framework stands: while states can pass pre-viability abortion restrictions that (ostensibly) protect the health of the woman or that strike some kind a balance between women's rights and fetal life, it is only after viability that they can completely favor fetal life over the rights of the woman (with limited exceptions when the woman's life is threatened). As a result, judges have struck down certain states' so-called heartbeat laws, which tried to prohibit abortions after detection of a fetal heartbeat (as early as six weeks of pregnancy). Bans on abortion after 12 or 15 weeks' gestation have also been reversed.
Now, with a new Supreme Court Justice expected to be hostile to abortion rights, advances in the care of preterm babies and ongoing research on artificial wombs suggest that the point of viability is already sooner than many assume and could soon be moved radically earlier in gestation, potentially providing a legal basis for earlier and earlier abortion bans.
Viability has always been a slippery notion on which to pin legal rights. It represents an inherently variable and medically shifting moment in the pregnancy timeline that the Roe majority opinion declined to firmly define, noting instead that "[v]iability is usually placed at about seven months (28 weeks) but may occur earlier, even at 24 weeks." Even in 1977, this definition was an optimistic generalization. Every baby is different, and while some 28-week infants born the year Roe was decided did indeed live into adulthood, most died at or shortly after birth. The prognosis for infants born at 24 weeks was much worse.
Today, a baby born at 28 weeks' gestation can be expected to do much better, largely due to the development of surfactant treatment in the early 1990s to help ease the air into babies' lungs. Now, the majority of 24-week-old babies can survive, and several very premature babies, born just shy of 22 weeks' gestation, have lived into childhood. All this variability raises the question: Should the law take a very optimistic, if largely unrealistic, approach to defining viability and place it at 22 weeks, even though the overall survival rate for those preemies remains less than 10% today? Or should the law recognize that keeping a premature infant alive requires specialist care, meaning that actual viability differs not just pregnancy-to-pregnancy but also by healthcare facility and from country to country? A 24-week premature infant born in a rural area or in a developing nation may not be viable as a practical matter, while one born in a major U.S. city with access to state-of-the-art care has a greater than 70% chance of survival. Just as some extremely premature newborns survive, some full-term babies die before, during, or soon after birth, regardless of whether they have access to advanced medical care.
To be accurate, viability should be understood as pregnancy-specific and should take into account the healthcare resources available to that woman. But state laws can't capture this degree of variability by including gestation limits in their abortion laws. Instead, many draw a somewhat arbitrary line at 22, 24, or 28 weeks' gestation, regardless of the particulars of the pregnancy or the medical resources available in that state.
As variable and resource-dependent as viability is today, science may soon move that point even earlier. Ectogenesis is a term coined in 1923 for the growth of an organism outside the body. Long considered science fiction, this technology has made several key advances in the past few years, with scientists announcing in 2017 that they had successfully gestated premature lamb fetuses in an artificial womb for four weeks. Currently in development for use in human fetuses between 22 and 23 weeks' gestation, this technology will almost certainly seek to push viability earlier in pregnancy.
Ectogenesis and other improvements in managing preterm birth deserve to be celebrated, offering new hope to the parents of very premature infants. But in the U.S., and in other nations whose abortion laws are fixed to viability, these same advances also pose a threat to abortion access. Abortion opponents have long sought to move the cutoff for legal abortions, and it is not hard to imagine a state prohibiting all abortions after 18 or 20 weeks by arguing that medical advances render this stage "the new viability," regardless of whether that level of advanced care is available to women in that state. If ectogenesis advances further, the limit could be moved to keep pace.
The Centers for Disease Control and Prevention reports that over 90% of abortions in America are performed at or before 13 weeks, meaning that in the short term, only a small number women would be affected by shifting viability standards. Yet these women are in difficult situations and deserve care and consideration. Research has shown that women seeking later terminations often did not recognize that they were pregnant or had their dates quite wrong, while others report that they had trouble accessing a termination earlier in pregnancy, were afraid to tell their partner or parents, or only recently received a diagnosis of health problems with the fetus.
Shifts in viability over the past few decades have already affected these women, many of whom report struggling to find a provider willing to perform a termination at 18 or 20 weeks out of concern that the woman may have her dates wrong. Ever-earlier gestational limits would continue this chilling effect, making doctors leery of terminating a pregnancy that might be within 2–4 weeks of each new ban. Some states' existing gestational limits on abortion are also inconsistent with prenatal care, which includes genetic testing between 12 and 20 weeks' gestation, as well as an anatomy scan to check the fetus's organ development performed at approximately 20 weeks. If viability moves earlier, prenatal care will be further undermined.
Perhaps most importantly, earlier and earlier abortion bans are inconsistent with the rights and freedoms on which abortion access is based, including recognition of each woman's individual right to bodily integrity and decision-making authority over her own medical care. Those rights and freedoms become meaningless if abortion bans encroach into the weeks that women need to recognize they are pregnant, assess their options, seek medical advice, and access appropriate care. Fetal viability, with its shifting goalposts, isn't the best framework for abortion protection in light of advancing medical science.
Ideally, whether to have an abortion would be a decision that women make in consultation with their doctors, free of state interference. The vast majority of women already make this decision early in pregnancy; the few who come to the decision later do so because something has gone seriously wrong in their lives or with their pregnancies. If states insist on drawing lines based on historical measures of viability, at 24 or 26 or 28 weeks, they should stick with those gestational limits and admit that they no longer represent actual viability but correspond instead to some form of common morality about when the fetus has a protected, if not absolute, right to life. Women need a reasonable amount of time to make careful and informed decisions about whether to continue their pregnancies precisely because these decisions have a lasting impact on their bodies and their lives. To preserve that time, legislators and the courts should decouple abortion rights from ectogenesis and other advances in the care of extremely premature infants that move the point of viability ever earlier.
[Editor's Note: This article was updated after publication to reflect Amy Coney Barrett's confirmation. To read other articles in this special magazine issue, visit the e-reader version.]
Democratize the White Coat by Honoring Black, Indigenous, and People of Color in Science
Celebrating BIPOC's achievements in science are a strong first step to make science a guiding force for all.
This article is part of the magazine, "The Future of Science In America: The Election Issue," co-published by LeapsMag, the Aspen Institute Science & Society Program, and GOOD.
Journalists, educators, and curators have responded to Black Lives Matter by highlighting the history and achievements of Black Americans in a variety of fields, including science. The movement has also sparked important demands to address longstanding scientific inequities such as lack of access to quality healthcare and the disproportionate impact of climate change and environmental pollution on neighborhoods of Black, Indigenous, and people of color (BIPOC). Making such improvements requires bringing BIPOC into science and into positions of leadership in laboratories, graduate schools, medical practices, and clinical trials. The moment is right to challenge scientific gatekeepers to respond to Black Lives Matter by widening the pathways that determine who becomes a scientist, a researcher, or a clinician.
The scientific workforce has long lacked diversity, which in turn discourages Black people from pursuing such careers. Causes include a dearth of mentors and role models, preconceived notions that science is exclusive to white males, and subpar STEM education. Across race, gender, class, ability, and all other dimensions that inform how an individual navigates the world, from the familial to the global level, seeing role models who resemble you impacts what you strive for and believe possible. As Marian Wright Edelman stated, "You can't be what you can't see"—a truth with ever-increasing resonance since the U.S. is projected to be minority-white by 2045.
Black Americans have paved the way for the nation to lead in science and technology, despite marginalization and exclusion from textbooks. Physicist Dr. Shirley Ann Jackson invented the technology behind Caller I.D. and Call Waiting. Otis Boykin's patents made televisions and radios what they are today. Thanks to the 2017 movie Hidden Figures, millions of Americans know about Katherine Johnson, the NASA mathematician whose calculations were essential to the successful trajectory of the Apollo 11 mission.
However, highlighting past role models who were Black achievers is not enough and paints too static a picture—especially when examples of transformative work by contemporary BIPOC scientists serving BIPOC communities abound. Cognitive neuroscientist Dr. Jonathan Jackson founded the Community Access, Recruitment, & Engagement (CARE) Research Center with the goal to break down barriers so that people of color participate in clinical trials. Geneticist Dr. Nanibaa' Garrison's research creates ethical frameworks to overcome genomic injustices so Indigenous populations can benefit from genetic research. Computer scientists Joy Buolamwini and Dr. Timnit Gebru's research drew attention to reinforced racial bias in artificial intelligence, leading Microsoft, Amazon, and IBM this summer to halt use of their facial recognition software.
"Integration does not mean equality if the space being integrated isn't exuberantly down for the cause."
In order to honor concretely the ubiquitous public statements and commitments to justice and equity that flooded everyone's inboxes in early June, we must include traditionally underrepresented voices in all phases of science and its applications. For guidance, we would benefit from listening to activists leading, for example, climate marches and protests over toxic water. Indeed, science is at the core of the issues for which young BIPOC are mobilizing. We need to sit down with these individuals to gain their input on how the narratives, practices, and opportunities in science should change. As Zeena Abdulkarim, a youth climate change organizer working with Zero Hour, explains: "Minority communities are exposed to what the privileged and people in power are not; therefore these communities know the right steps to take in the change we need for the kickstart of true social and environmental justice."
Two other Black youth, for example, used the platform of the laboratory while in high school to mobilize for change. Elle Lanair Lett, now specializing in epidemiology as an M.D.-Ph.D. student in Philadelphia, was prompted by family prevalence of diabetes to research the genetics of pancreatic cells. Dr. Otana Jakpor, now an ophthalmology resident in Michigan, was motivated by the pollution in her hometown of Riverside, California, to research the pulmonary effects of indoor air purifiers, with findings that influenced California ozone regulations. Both became finalists in a national science fair, propelling them on paths toward science careers. These young scientists demonstrate how people's communities and lived experiences can shape trajectories of science research, which, in turn, determines which visions for society are materialized and popularized.
We can also gain insight from another childhood science fair veteran, self-proclaimed "Black STEMinist" Augusta Uwamanzu-Nna, who graduated from college in May and works as a bioengineer. In her view, "we need to shift the burden away from Black people and onto individuals who have contributed to our current reality—fundamentally requiring understanding, open-mindedness, a lack of bias, cultural competency, anti-racism, anti-homophobia, and many, many other things."
Celebrating BIPOC's accomplishments in science and cultivating new leadership today are strong first steps to make science a guiding force for all. Ms. Uwamanzu-Nna keenly reminds us, "Integration does not mean equality if the space being integrated isn't exuberantly down for the cause." Indeed, educational institutions, scientific companies, and medical centers must acknowledge and embrace their role in democratizing science in order for society to realize racial and scientific justice.
[Editor's Note: To read other articles in this special magazine issue, visit the beautifully designed e-reader version.]