The use of crowdfunding platforms to spread hype about unproven stem cell interventions for neurological conditions is an “emerging risk”, researchers warn.
A new study has found that 78 of 408 cases where people used crowdfunding platforms to fundraise for medical treatment were for experimental stem cell interventions that lacked conclusive evidence of safety and efficacy and hence could not be covered by insurance policies. Interventions such as autologous bone marrow stem cell transplants were used to treat multiple sclerosis, Parkinson’s disease, joint disease, and COPD.
With the interventions lacking credible scientific evidence, those selling them resorted to using ‘tokens of legitimacy’ to attempt to prove credibility, write Jeremy Snyder of Simon Fraser University in Canada and Leigh Turner from the Center for Bioethics, University of Minnesota USA. Their analysis found the crowdfunding campaigns raised a total of $400,000 from 3717 donors through the GoFundMe and YouCaring platforms to fund unproven stem cell interventions.
Published in Regenerative Medicine the authors showed the fundraising campaigns associated their stem cells treatments with credible clinical research as an evidence base for their work, or registered interventions as ‘pay-to-participate’ clinical trials on public databases.
The crowdfunding campaigners then highlighted this information in their campaigns, which they shared widely through social media networks.
“Specifically, these campaigns repeat, exaggerate and broadcast to a wide audience claims that help to bring credibility to these businesses, and their potential customers often view purchasing these services as a way of advancing science and helping progress toward finding new cures for their illness as well as forcing public and private insurers to fund them.”
The limbic is aware of two young Australians with Multiple Sclerosis who raised tens of thousands through crowdfunding and social media platforms in order to travel overseas for experimental stem cell treatments.
Associate Professor Megan Munsie, Deputy Director of Centre for Stem Cell Systems at the University of Melbourne, said the crowdfunding phenomenon was an “emerging risk” in Australia.
“One of the things that concerns me is that goodwill, we talk about risk of harm, we don’t really know what is being injected into these patients, if the cells might grow inappropriately or carry infection, and there is harm associated with financial cost,” Professor Munsie said.
“But what about the fundamental deviation of care? We have seen people who have fundraised for someone in the community to go overseas pursuing what is a mirage.
“If this continues to grow in terms of a new marketing or fundraising tool you will have more and more people in the community thinking that they are helping but also maybe pulling people further away from legitimate opportunities to have good quality care.”
Over the past few years, advocates from the research and medical community have called on the TGA to close a loophole in the biologicals regulatory framework that has allowed commercial operators to market their unproven stem cell interventions direct-to-consumer outside regulatory oversight.
In response, the TGA last year announced it would change the rules so procedures offered in private practice (outside a hospital) that use ‘more than minimally manipulated’ autologous stem cells are regulated under the framework and cannot be advertised direct to the public.
The changes came into effect from 1 July 2018 – however “services that do not mention specific products will still be permitted to be advertise”.
Professor Munsie said she believed the ban on companies advertising stem cell treatments would extend to crowdfunding platforms and social media.
However it may not stop individuals posting misleading medical claims about such interventions on those platforms.
That is the challenge, Professor Munsie said. “It’s family and friends who are posting these.”