Crowdfunding 'misleads' on stem cell treatments

Crowdfunding campaigns to raise money for stem cell treatments tend to exaggerate potential benefits while understating potential risks of the interventions, suggests a new study.

When insurance companies will not pay for unproven stem cell treatments, patients sometimes seek other sources such as crowdfunding, which harnesses social media to raise money.

In the recent study in JAMA, Dr Jeremy Snyder at the University of Simon Fraser University in Burnaby, Canada, and colleagues concluded that crowdfunding practices might bias public opinion, and place treating clinicians in difficult ethical positions.

'These findings suggest that medical crowdfunding campaigns convey potentially misleading messages about stem cell-based interventions,' they added.

The researchers searched for mentions of businesses offering stem cell interventions on the crowdfunding web sites GoFundMe and YouCaring and identified 408 campaigns seeking funding for stem cell treatments sold by US businesses. Researchers noted that the actual number is likely to be higher as the study only investigated campaigns from 351 businesses and only on two crowdfunding platforms.

In recent years, crowdfunding websites have provided new possibilities for patients to raise money for treatments, including non-established interventions. The claims made by websites are often enhanced by the emotional context provided, including testimonies from patients, said the researchers.

Currently, the only stem cell-based treatments for which there is good evidence for efficacy are blood and immune conditions such as leukemia and grafts used in skin and eye surgeries. While there is progress in research investigating other uses of stem cell treatments, these interventions remain experimental.

Last week, the US FDA (Food and Drug Administration) sought a permanent injunction to close down two clinics offering unapproved stem cell therapies (see BioNews 949). Three patients had lost their eyesight after undergoing experimental stem cell interventions to treat eye conditions at one of the affiliated clinics (see BioNews 893).

'Online crowdsourcing can potentially amplify a false message about access to beneficial stem cell treatments, diverting patients from other forms of evidence-based care,' said stem cell researchers Dr Megan Munsie and Dr Claire Tanner at the University of Melbourne, Australia, in an article for Cosmos.

'Raising awareness of this is critical to avoid the exploitation of not only those seeking treatment, but those generous donors investing in their healthcare,' they said.