Yet another study is raising concerns about some of the medical crowdfunding campaigns that are being run on popular sites such as GoFundMe and YouCaring.
In a paper published Tuesday in the Journal of the American Medical Association (JAMA), researchers report that 1,059 U.S. and Canadian medical crowdfunding campaigns raised nearly $6.8 million during a recent two-year period for several treatments that are scientifically unproven and/or known to be potentially dangerous.
“Assuming that the funds raised are spent to pay for these treatments, donors indirectly contributed millions of dollars to practitioners to deliver dubious, possibly unsafe care,” write the authors of the paper.
In many situations, crowdfunding can be a way for individuals and families who lack the necessary health insurance to pay for expensive treatments for medical illnesses or for traumatic injuries. It can also help pay travel and other expenses associated with being in a government-approved clinical trial for promising new drugs or other interventions.
For the JAMA paper, Dr. Ford Vox, a brain injury specialist and medical ethicist at the Shepherd Center in Atlanta, and his colleagues searched for activity around unsupported medical treatments on four crowdfunding sites — GoFundMe, YouCaring, CrowdRise and FundRazr — between November 2015 and December 2017. They looked only at fundraising campaigns for patients living in the United States and Canada.
The researchers also narrowed their search to terms related to five particularly popular spurious treatments: homeopathy or naturopathy for cancer, hyperbaric oxygen therapy (HBOT) for brain injury, stem cell therapy for brain injury and spinal cord injury, and long-term antibiotic therapy for “chronic Lyme disease.”
All of those treatments are without scientific support. The homeopathy, naturopathy and hyperbaric oxygen therapies are ineffective, while the other two treatments not only offer no medical benefits, but also can cause serious — and even life-threatening — side effects.
Here’s how Vox and his colleagues describe the results of their study in a Health Affairs blog posting:
[W]e found a total of $6.77 million raised for the five treatment categories we targeted, most of it ($3.46 million) going to homeopathic and naturopathic quack cancer cures. Donors chipped in $1.2 million toward helping expose 188 people to stems cells for brain injury, which is highly concerning, given that the consequences can be devastating: strokes, infections, or death. While there are a number of real medical trials underway (for which subjects needn’t raise funds to participate), there are no legitimate, safe stem cell treatments for brain injury on the market.
The same situation applies to spinal cord injury, where victims have paid enormous amounts to receive stem cell injections only to be re-victimized, this time by unethical providers. We found that well-meaning donors gave $590,446 to 93 campaigns seeking money for spinal cord stem cell treatments.
The study also revealed that crowdfunding campaigns had raised almost $700,000 (out of a desired $2.1 million) to fund long-term antibiotic therapy for chronic Lyme disease.
“Many of these campaigns hadn’t closed at the time of our research and likely went on raising money,” the researchers add. “In total, the campaigns in all treatment areas combined sought over $27 million.”
Almost all — 98 percent — of the crowdfunding campaigns appeared on GoFundMe. YouCaring had the other 2 percent. None were found on CrowdRise or FundRazr.
The researchers were also able to identify nine practitioners and eight countries that patients intended to visit with their crowdfunded money. These destinations included clinics in Germany and Mexico for homeopathic or naturopathic cancer therapies, a New Orleans clinic for HBOT for brain injury, and clinics in the U.S., Panama, Thailand, India, China and Mexico for stem cell therapies.
“This money is wasted at best and harmful at worst,” write Vox and his colleagues in the Health Affairs blog. “We believe that real harm is likely to have occurred in this snapshot of the market we observed, though we do not have a means to measure such harm. In the case of cancer, researchers have documented dramatically increased death rates in people who chose to pursue alternative medicine avenues over conventional care.”
“GoFundMe and its competitors must allocate appropriate resources to monitor, flag, and downplay problematic campaigns, and users need to remain vigilant about where they donate and why,” they conclude.
Confirming earlier research
Leigh Turner, a University of Minnesota bioethicist who is one of the country’s leading critics of clinics marketing unproven stem cell treatments to patients, agrees. Earlier this year, he published in JAMA a study that identified 408 crowdfunding campaigns seeking $7.4 million in donations for unproven stem cell interventions within a single four-month period on two popular websites, GoFundMe and YouCaring. By the end of that four-month period, the campaigns had raised $1.4 million from more than 13,000 donors.
In an e-mail exchange with MinnPost, Turner said he was particularly struck with the findings from the new JAMA study regarding the large amount of money being raised for homeopathic and naturopathic interventions for cancer.
“These jarring numbers prompt questions about the total number of individuals using crowdfunding campaigns for homeopathic remedies or naturopathic interventions that are not evidence-based,” he said.
Turner believes crowdfunding sites need to do more to help people evaluate the scientific validity of the medical claims behind treatments for which money is being raised. Right now, most sites disavow any responsibility for the content of campaigns and, instead, simply encourage people to “do their homework,” he explained.
Turner wants crowdfunding sites to stop “serving as echo chambers for companies marketing unproven interventions.” The sites should develop screening tools to distinguish “evidence-based medical claims from hyperbole, misinformation, and even outright fraudulent advertising,” he said, and they should also refuse to host campaigns connected to companies that are marketing medical treatments known to be unproven, useless or dangerous.
What donors can do
Until those actions are taken, however, prospective donors are going to have to do their own due diligence.
“They should look into the kinds of interventions individuals are seeking and evaluate whether or not these purported interventions have any realistic chance of being helpful,” advised Turner. “They should also investigate the clinics where medical interventions mentioned in campaigns are provided and try to determine whether these facilities engaged in evidence-based medicine or have a reputation for running scams and engaging in quackery. They should also make sure that individuals seeking donations can be trusted and are not taking advantage of crowdfunding sites to mislead prospective donors.”
“While there are no guaranteed ways to avoid being misled, prospective donors to crowdfunding campaigns can take steps to increase the likelihood that they are providing support for campaigns seeking funding for evidence-based medical interventions rather than for campaigns requesting donations for unproven and risky procedures,” he added.
FMI: You’ll find an abstract of the new JAMA study on the journal’s website.