Study: Medical Crowdfunding Can Pose Major Patient Risks

November 28, 2018 02:08 pm Michael Devitt

No doubt most family physicians have encountered a patient who enters the office with "proof" of some miracle cure they've seen online or on TV.

[money in jar with crowdfunding in writing]

Granted, questionable medical therapies are nothing new. From tobacco smoke enemas(www.bcmj.org) to the Lebenswecker,(blogs.library.ucsf.edu) the history of American medicine is filled with substances and devices that have promised -- with no credible evidence whatsoever -- to wipe away a person's ills. Even today, people spend billions of dollars(www.consumer.ftc.gov) on questionable treatments, which often claim the ability to treat everything from cancer to AIDS. In many such instances, the alleged cure may be worse than the disease.

Crowdfunding sites are not immune to this problem. Although the goals of most crowdfunding campaigns are honorable, some individuals use these sites to raise money for questionable therapies, and a research letter(jamanetwork.com) published in the Oct. 23/30 edition of JAMA shows how rampant this practice has become.

JAMA Study Methodology and Results

Story Highlights
  • A new study shows that crowdfunding sites are being used to raise large sums of money for ineffective and potentially dangerous therapies.
  • A review of several crowdfunding sites identified campaigns to raise money for homeopathic and naturopathic remedies for cancer, hyperbaric oxygen therapy for brain injury, stem cell therapy for brain and spinal cord injury, and long-term antibiotic therapy for chronic Lyme disease.
  • Collectively, these campaigns had raised about $6.8 million, with more than half going to homeopathic or naturopathic cancer treatments.

Between Nov. 14, 2017, and Dec. 11, 2017, researchers from New York University School of Medicine in New York City and the Shepherd Center in Atlanta searched the popular crowdfunding platform GoFundMe,(www.gofundme.com) as well as three other crowdfunding sites that permit medical fundraising: YouCaring (now part of GoFundMe),(www.youcaring.com) CrowdRise by GoFundMe(www.crowdrise.com) and the Canadian site FundRazr.(fundrazr.com) They focused their search on five therapies that are considered ineffective or scientifically unproven at best and potentially dangerous at worst:

  • homeopathic or naturopathic remedies for cancer,
  • hyperbaric oxygen therapy for brain injury,
  • stem cell therapy for brain injury,
  • stem cell therapy for spinal cord injury, and
  • long-term antibiotic therapy for chronic Lyme disease.

Only campaigns launched since Nov. 1, 2015, in the United States and Canada that mentioned an intention to direct all or some of the raised funds to one of the five treatment types for an individual were included in the analysis.

The researchers identified 1,059 individual medical crowdfunding campaigns that had raised about $6.8 million, collectively. Ninety-eight percent of the campaigns were on GoFundMe; the rest were on YouCaring.

Homeopathic or naturopathic remedies for cancer had the most campaigns (474) and had collected the most money (more than $3.46 million). Figures for the remaining campaign types were hyperbaric oxygen therapy for brain injury (190 campaigns that had raised more than $785,000); stem cell therapies for brain injury (188 campaigns and nearly $1,250,000) and for spinal cord injury (93 campaigns and more than $590,000); and long-term antibiotic therapy for Lyme disease (114 campaigns and almost $690,000).

The authors also identified nine practitioners and eight countries that campaigners intended to visit for treatment. Sites for homeopathic or naturopathic cancer treatments included clinics in Germany and Mexico, while clinics in the United States, China, India, Mexico, Panama and Thailand offered stem cell treatments.

"These results reveal that a wide scope of campaigns for unsupported, ineffective or potentially dangerous treatments are moderately successful in obtaining funding," the authors noted, adding that donors "indirectly contributed millions of dollars to practitioners to deliver dubious, possibly unsafe care."

More From Health Affairs Blog

Meanwhile, in a related Oct. 23 Health Affairs blog post(www.healthaffairs.org) titled "Medical Crowdfunding's Dark Side," the authors noted that social media can be used for various purposes, but that pre-existing societal inequities can make a significant difference in the success of a crowdfunding campaign, while giving questionable therapies an unwelcome opportunity to take root and grow.

"Crowdfunding not only carries with it an inherent unfairness, it also opens wide the door to quackery in the field of stem cells," they wrote. They cited results from a different study(jamanetwork.com) published in JAMA in May, which found that people had contributed $1.45 million to 408 crowdfunding campaigns, with the funds directed to a list of more than 350 businesses engaged in direct-to-consumer marketing of stem cell therapies.

"At least for the world of stem cells, crowdfunding represents a potentially lucrative new revenue stream, and we can undoubtedly thank medical crowdfunding for exposing more people to the risks inherent in unregulated stem cell procedures," the blog's authors wrote.

They also predicted that as crowdfunding becomes more mainstream, the number of questionable treatments and practitioners will likely increase.

"The new crowdfunding economy will encourage the proliferation of unethical medical practices and offer practitioners positive encouragement to roll out even more 'innovative' treatments that are likely to catch crowdfunding dollars in lieu of scientific evidence," they wrote.

"As the evidence mounts that medical crowdfunding has a dark side, we must address the problems raised by a social technology that can otherwise be a powerful mechanism for good," said the blog's authors. They added that sites such as GoFundMe "must allocate appropriate resources to monitor, flag and downplay problematic campaigns," and that users of these sites "need to remain vigilant about where they donate and why."

Family Physician Expert Perspective

Medical crowdfunding has the potential to help those in need, but it also can cause people great harm. Jennifer Frost, M.D., medical director for the Academy's Health of the Public and Science Division, told AAFP News that some long-suffering patients may look at the questionable treatments promoted on crowdfunding sites and decide to ignore the risks.

"Many individuals with chronic conditions are desperate for relief, so they are vulnerable to the practitioners who promise results that they ultimately can't deliver," Frost said.

Family physicians can play an important role by making patients aware of the risks associated with these treatments, she noted.

"Patients trust their family doctor, so it is our responsibility to warn them of the potential dangers," said Frost. "More importantly, we must listen to our patients' concerns, determine their goals, and advocate for equal access to evidence-based treatments."

Additional Resources
Social Science and Medicine: Producing a Worthy Illness: Personal Crowdfunding Amidst Financial Crisis(www.sciencedirect.com)

Hastings Center Report: Crowdfunding for Medical Care: Ethical Issues in an Emerging Health Care Funding Practice(www.ncbi.nlm.nih.gov)