Medical Crowdfunding Supports Dubious Therapies

Ricki Lewis, PhD

October 23, 2018

Crowdfunding campaigns to cover healthcare costs may promote questionable treatments, according to researchers.

In a study published online October 23 in JAMA, Ford Vox, MD, from Brain Injury Rehabilitation, Shepherd Center, Atlanta, Georgia, and colleagues considered crowdfunding for five types of medical treatments judged to be "scientifically unsupported or potentially dangerous." The treatments included the following:

  • Homeopathy or naturopathy for cancer (474 campaigns);

  • Hyperbaric oxygen for brain injury (HBOT; 190 campaigns);

  • Stem cells for brain injury (188 campaigns);

  • Stem cells for spinal cord injury (93 campaigns); and

  • Long-term antibiotic treatment for chronic Lyme disease (114 campaigns).

Homeopathic cancer treatment and HBOT for brain injury are ineffective, they write. Long-term antibiotic therapy for Lyme disease and the use of stem cells to treat central nervous system injuries have serious adverse effects, the researchers write.

The investigators searched three crowdfunding sites, GoFundMe, Crowdrise, and FundRazr, from November 14 to December 11, 2017, for terms related to the five areas. They restricted their analysis to campaigns that had been listed since November 1, 2015, in the United States and Canada and to campaigns specifying that some or all funds would go toward treatment.

Of 1636 campaigns, 1059 mentioned an intention to use the funds for one of the five indications. Overall, the campaigns sought $27,249,488 and raised $6,779,700 (24.9%). Of those campaigns, 98% were on GoFundMe; none of the campaigns on the other two sites met the criterion that funds would be used for treatment.

Homeopathic or naturopathic cancer treatments raised the largest amount ($3,464,871 of $12,581,963 sought). The next largest amount was for HBOT for brain injury ($785,422 of $4,012,408 sought), followed by stem cell treatments for brain injuries ($1,249,597 of $5,913,905 requested) and stem cell treatments for spinal cord injuries ($590,446 of $2,578,990 requested). Long-term antibiotic therapy for chronic Lyme disease elicited $689,363 of the requested $2,162,221.

Campaigners planned to seek treatment in clinics in Germany and Mexico for homeopathic or naturopathic cancer treatments; in a New Orleans clinic for HBOT for brain injury; and in clinics in the United States, Panama, Thailand, China, India, and Mexico for 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 researchers conclude. They acknowledge that a limitation of the study is generalizability.

Writing in a commentary published online in Health Affairs, Vox and colleagues (including some of the coauthors of the JAMA article) use the case of "social media star" and "inspirational speaker" Claire Wineland to address the misperception that crowdfunding for medical treatments helps to overcome inequities in care. Unlike the questionable treatments addressed in the JAMA article, Wineland's double lung transplant to treat cystic fibrosis is an established treatment. However, the 21-year-old died a week after the procedure, on September 2, 2018, from a related stroke.

Wineland's campaign on GoFundMe raised $267,837, which exceeded the $225,000 goal requested for medication and ancillary costs to supplement insurance coverage.

The researchers attribute her fundraising success to the vast media coverage of her plight. Not everyone in need has a similar platform, they point out. "Crowdfunding can reinforce existing societal inequities," they write.

Paul Knoepfler, PhD, of the Institute for Regenerative Cures at the University of California, Davis, School of Medicine, distinguishes situations for online medical crowdfunding. "Patients raising funds for FDA-approved medical therapies that have costs beyond their economic means or insurance coverage seems reasonable.

"On the other hand, a sizable number of online fundraising campaigns are for unproven and sometimes even potentially dangerous offerings, and this kind of fundraising can be driven less by the patients and more by for-profit firms," he said, referring to stem cell clinics that encourage patients to go online to raise money to pay the businesses.

Leigh Turner, PhD, from the Center for Bioethics, University of Minnesota, Minneapolis, coauthor of a recent report on crowdfunding for stem cell interventions, says the online platforms are partly responsible. "GoFundMe's terms of service state that certain kinds of campaigns are prohibited, and that includes interventions, such as pharmaceuticals or medical procedures, not approved by a national regulatory body. But you can find campaigns for just about anything. They caution about stem cells while offering practical tips about how to set up your stem cell campaign."

Organizations of stem cell researchers and patient advocacy groups provide information to help people distinguish evidence-based stem cell therapies from false promises. "But meanwhile, hundreds of businesses are on YouTube, Twitter, Facebook, so that the reality is often misunderstanding. Patients become lost in a sea of confusion and inaccurate information," Turner said.

The JAMA report indicates that confusion among medical consumers in the crowdsourcing space extends beyond stem cells.

Dr Vox is an advisory board member for Medscape; one of his coauthors, Art Caplan, PhD, is a regular contributor to Medscape. The other researchers and commentators have disclosed no relevant financial relationships.

JAMA. 2018;320:1705-1706.

Health Aff. Published online October 23, 2018.

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