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."
Scientists Just Created Liquid Solar Power That Can Be Stored for 18 Years
A team of Swedish scientists has gathered solar power so pure, that until recently, capturing it was an impossibility.
Look no further than this week's climate strikes for evidence that millions of people are passionate about curbing global warming.
Unlike relatively limited solar panel energy storage, norbornadiene can potentially maintain its potency for years.
But even potential solutions, like alternative meats, have their own challenges. Some scientists are putting their focus on the sun to help balance out our energy consumption.
In fact, they are gathering solar power so pure that, until recently, capturing it was an impossibility.
The Lowdown
A group of Swedish scientists has created a liquid called norbornadiene. This liquid sunshine can capture up to 30 percent of raw solar power. To put it in perspective, the best publicly available solar panels can harness 21 percent. Norbornadiene would bring in about 50 percent more power – a significant difference in energy efficiency.
Most notably, unlike relatively limited solar panel energy storage, norbornadiene can potentially maintain its potency for years. We could have the ability to collect and store premium solar power, making it easier for current and future generations to use fossil and nuclear fuel alternatives.
"The norbornadiene molecules that we have made have very good properties, in terms of solar energy capture efficiency, storage time and energy density," says team lead Dr. Kasper Moth-Poulson of the Chamlers University of Technology. "They can store energy without the need for insulation materials for 18 or more years."
Next Up
Swedish scientist Moth-Poulsen and his team have been testing the norbornadiene on the physics building roof at the Chalmers University of Technology. Once activated, it heats up to just below boiling and provides enough power to be useful.
The energy density is 250 watt-hours per kilogram, twice the strength of Tesla's popular Powerall battery.
It requires potentially toxic solvents, like a cobalt-based activator, to transform into its full potential. The team is currently trying to find less-hazardous catalysts to help transform the norbornadiene to its active form, quadricyclane. Exposing it to sunlight is the main way to reactivate the norbornadiene's power. Over time, scientists will likely make it more efficient with less toxic agents.
The energy density is 250 watt-hours per kilogram, twice the strength of Tesla's popular Powerall battery.
Open Questions
The biggest question is safety, perceived or otherwise: Are you ready to drive around with 250 kWh of pure solar in your Hyundai? Norbornadiene may be stable in a hermetically sealed lab, but sculpting it for everyday use requires another level of security.
The half-life of the sunshine power is also an estimate, too. The challenge with new scientific substances is you don't know how the matter will evolve over time. It is easy to be overly optimistic about this one discovery being the key to our energy needs. For the time being, it is wiser to look at norbornadiene as a progressive step rather than a revolutionary one.
Even at its least effective, norbornadiene and its related material is a step toward us utilizing the one natural resource that won't run out for generations. In the short-term, a stable form of it could offset our fossil and nuclear fuel use and even help lower the carbon footprint made by long-distance transportation. It will be fascinating to see what future aircraft builders, home designers and even car manufacturers do as the solar technology conversation heats up.
Moth-Poulsen wants norbornadiene to be a definitive part of the climate change puzzle.
"I hope that in five years, we will see the first products based on our molecules and could help mitigate the daily variations in temperature," he says. "This will lead to increased thermal comfort and reduced energy consumption for heating and cooling."
Virtual Reality is Making Medical Care for Kids Less Scary and Painful
A patient at Children's Hospital Los Angeles (Courtesy of Children's Hospital Los Angeles) plus Bear Blast, developed by AppliedVR.
A blood draw is not normally a fun experience, but these days, virtual reality technology is changing that.
Instead of watching a needle go into his arm, a child wearing a VR headset at Children's Hospital Los Angeles can play a game throwing balls at cartoon bears. In Seattle, at the University of Washington, a burn patient can immerse herself in a soothing snow scene. And at the University of Miami Hospital, a five-minute skin biopsy can become an exciting ride at an amusement park.
VR is transforming once-frightening medical encounters for kids, from blood draws to biopsies to pre-surgical prep, into tolerable ones.
It's literally a game changer, says pediatric neurosurgeon Kurtis Auguste, who uses the tool to help explain pending operations to his young patients and their families. The virtual reality 3-D portrait of their brain is recreated from an MRI, originally to help plan the surgery. The image of normally bland tissue is painted with false colors to better see the boundaries and anomalies of each component. It can be rotated, viewed from every possible angle, zoomed in and out; incisions can be made and likely results anticipated. Auguste has extended its use to patients and families.
"The moment you put these headsets on the kids, we immediately have a link, because honestly, this is how they communicate with each other," says Auguste. "We're all sitting around the table playing games. It's really bridged the distance between me, the pediatric specialist, and my patients" at the Benioff Children's Hospital Oakland, now affiliated with the University of California San Francisco School of Medicine.
The VR experience engages people where they are, immersing them in the environment rather than lecturing them. And it seems to work in all environments, across age and cultural differences, leading to a better grasp of what will be undertaken. That understanding is crucial to meaningful informed consent for surgery. It is particularly relevant for safety-net hospitals, which includes most children's hospitals, because often members of the families were born elsewhere and may have limited understanding of English, not to mention advanced medicine.
Targeting pain
"We're trying to target ways that we can decrease pain, anxiety, fear – what people usually experience as a function of a needle," says Jeffrey Gold, a pioneer in adapting VR at Children's Hospital Los Angeles. He ran the pain clinic there and in 2004 initially focused on phlebotomy, simple blood draws. Many of their kids require frequent blood draws to monitor serious chronic conditions such as diabetes, HIV infection, sickle cell disease, and other conditions that affect the heart, liver, kidneys and other organs.
The scientific explanation of how VR works for pain relief draws upon two basic principles of brain function. The first is "top down inhibition," Gold explains. "We all have the inherent capacity to turn down signals once we determine that signal is no longer harmful, dangerous, hurtful, etc. That's how our brain operates on purpose. It's not just a distraction, it's actually your brain stopping the pain signal at the spinal cord before it can fire all the way up to the frontal lobe."
Second is the analgesic effect from endorphins. "If you're in a gaming environment, and you're having fun and you're laughing and giggling, you are actually releasing endorphins...a neurochemical reaction at the synaptic level of the brain," he says.
Part of what makes VR effective is "what's called a cognitive load, where you have to actually learn something and do something," says Gold. He has worked with developers on a game call Bear Blast, which has proven to be effective in a clinical trial for mitigating pain. But he emphasizes, it is not a one-size-fits all; the programs and patients need to be evaluated to understand what works best for each case.
Gold was a bit surprised to find that VR "actually facilitates quicker blood draws," because the staff doesn't have to manage the kids' anxiety, so "they require fewer needle sticks." The kids, parents, and staff were all having a good time, "and that's a big win when everybody is benefiting." About two years ago the hospital made VR an option that patients can request in the phlebotomy lab, and about half of kids age 4 and older choose to do so.
The technology "gets the kids engaged and performing the activity the way we want them to" to maximize recovery.
VR reduces or eliminates the need to use sedation or anesthesia, which carries a small but real risk of an adverse reaction. And important to parents, it eliminates the recovery time from using sedation, which shortens the visit and time missed from school and work.
A more intriguing question is whether reducing fear and anxiety in early-life experiences with the healthcare system through activities like VR will have a long-term affect on kids' attitudes toward medicine as they grow older. "If you're a screaming meemie when you come get your blood draw when you're five or seven, you're still that anxious adolescent or adult who is all quivering and sweating and avoiding healthcare," Gold says. "That's a longitudinal health outcome I'd love to get my hands on in 10-15 years from now."
Broader applications
Dermatologist Hadar Lev-Tov read about the use of VR to treat pain and decided to try it in his practice at the University of Miami Hospital. He thought, "OK, this is low risk, it's easy to do. So we got some equipment and got it done." It was so affordable he paid for it out of his own pocket, rather than wait to go through administrative channels. The results were so interesting that he decided to publish it as a series of case studies with a wide variety of patients and types of procedures.
Some of them, such as freezing off warts, are not particularly painful. "But there can be a lot of anxiety, especially for kids, which can be worse than pain and can disrupt the procedure." It can trigger a non-rational, primal fight or flight response in the limbic region of the brain.
Adults understand the need for a biopsy of a skin growth and tolerate what might be a momentary flick of pain. "But for a kid you think twice about a biopsy, both because it's a hassle and because it could be a traumatic event for a child," says Lev-Tov. VR has helped to allay such fears and improve medical care.
Integrating VR into practice has been relatively easy, primarily focusing on simple training for staff and ensuring that standard infection control practices are used in handling equipment that is used by different patients. More mundane issues are ensuring that the play back and wi-fi equipment are functioning properly. He has had a few complaints from kids when the procedure is competed and the VR is turned off prematurely, which is why he favors programs like a roller coaster ride that lasts about five minutes, ample time to take a biopsy or two.
The future is today
The pediatric neurosurgeon Auguste is collaborating with colleagues at Oakland Children's to expand use of VR into different areas of care. Cancer specialists often use a port, a bubble installed under the skin in the chest of the child, to administer chemotherapy. But the young patient's curiosity often draws their attention downward to the port and their chin can potentially contaminate or obstruct it, interfering with the procedure. So the team developed a VR game involving birds that requires players to move their heads upward, away from the port, improving administration of the drugs and reducing the risk of infection.
Innovative use of VR just may be one tool that actually makes kids eager to visit the doctor.
Other games are being developed for rehabilitation that require the use of specific nerve and muscle combinations. The technology "gets the kids engaged and performing the activity the way we want them to" to maximize recovery, Auguste explains. "We can monitor their progress by the score on the game, and if it plateaus, maybe switch to another game."
Another project is trying to ease the anxiety and confusion of the patient and family experience within the hospital itself. Hospital staff are creating a personalized VR introductory walking tour that leads from the parking garage through the maze of structures and corridors in the hospital complex to Dr. Auguste's office, phlebotomy, the MRI site, and other locations they might visit. The goal is to make them familiar with key landmarks before they even set foot in the facility. "So when they come the day of the visit they have already taken that exact same path, hopefully more than once."
"They don't miss their MRI appointment and therefore they don't miss their clinical appointment with me," says Auguste. It reduces patient anxiety about the encounter and from the hospital's perspective, it will reduce costs of missed and rescheduled visits simply because patients did not go to the right place at the right time.
The VR visit will be emailed to patients ahead of time and they can watch it on a smartphone installed in a disposable cardboard viewer. Oakland Children's hopes to have the system in place by early next year. Auguste says their goal in using VR, like other health care providers across the country, is "to streamline the entire patient experience."
Innovative use of VR just may be one tool that actually makes kids eager to visit the doctor. That would be a boon to kids, parents, and the health of America.