‘Alarming’ and unproven autism treatments abound on Facebook. Is it time for Canada to tighten regulations?

This story is a collaboration between the IJF and TVO’s Big [If True]

Late last year, a Facebook user in a private group on the social media website asked about some unusual symptoms their five-year-old autistic child had developed after applying a cream sold by the group’s administrators.

“Initially, my child did not show any reaction to this, but recently, I have observed that his fingernails have been falling out,” the poster wrote. “Is this a detox reaction?”

The treatment, known as OSR cream, is not approved for medical use in Canada or the U.S., where the Food and Drug Administration has warned promoters about the potential for serious side effects. But the people behind the Facebook group, called “OSR cream for autism,” claimed it could help improve users’ cognitive function, motor skills, sleep and mood by removing heavy metals from their systems, and described using it on their autistic children.

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Until last month, one of the group’s two administrators — based in B.C. — was accepting payments of US$175 to ship small bottles of the cream to people around the world.

The operation was brought to light by Melissa Eaton, a North Carolina mom who has infiltrated dozens of similar Facebook groups and reported what she found to the relevant authorities.

“I'm no scientist or doctor, but … that's always alarming when you're hearing that a child's fingernails are falling off,” she told the IJF.

OSR is just the latest in a long list of dubious autism “treatments” and “cures” that Eaton has discovered being promoted through social media. She was responsible for exposing a B.C. naturopath who was charging parents thousands of dollars to give their autistic children pills made from human feces, and for alerting authorities to a bleach-like substance marketed to these same parents.

Eaton’s recent findings also include Facebook groups promoting unapproved stem cell treatments for autistic kids, or even selling suramin — a potent and dangerous antiparasitic drug used to treat African sleeping sickness and river blindness, which has side effects including vomiting, numbness and changes in or loss of vision. Many of these products have their basis in the false claim that heavy metals in vaccines cause autism and that it is therefore possible to treat or even cure autistic children by “detoxifying” them.

Experts say the marketing and sale of unproven medical treatments is a long-standing problem on social media, and both the platforms and the governments responsible for regulating them need to do more to protect users.

“Imagine if we were seeing this on television or radio — how long would we let that happen?” said Heidi Tworek, director of the Centre for the Study of Democratic Institutions at the University of B.C.

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Marco Zenone, an assistant professor of health science communication at the University of Ottawa, is studying the proliferation of Facebook ads promoting stem cell treatments to parents of autistic kids, despite a lack of good evidence such treatments are effective.

“They use some really smart — unfortunately — tactics that really gain the trust of parents and it gives the illusion that this is a real option and scientifically proven,” he told the IJF.

Facebook parent company Meta prohibits ads with “deceptive or exaggerated claims about health-related benefits of a product or service” and specifically bans claims of curing or healing autism.

Critics say these rules aren’t well-enforced. A recent Reuters investigation revealed that Meta had projected 10 per cent of its 2024 revenue — about US$16 billion — would come from ads for scams and banned goods. A collage of Facebook ads advertising stem cell therapies for treatment of autism. Facebook ads identified by Marco Zenone advertise unproven stem cell treatments for autism in countries like Turkey and India. (Facebook/The Investigative Journalism Foundation)

Marketing through private Facebook groups like the ones Eaton has exposed could be even riskier, Zenone argues.

“There's a different level of trust that comes with seeing a paid ad versus seeing somebody in the community that you identify with and see yourself in,” he said. “There's a lot of research showing that sometimes these groups that pose as support groups are very much a commercial advertising strategy.”

There are policies governing what happens in these groups as well. The sale of prescription drugs and pharmaceuticals is banned on Facebook, and Meta says it will remove health misinformation that “is likely to directly contribute to the risk of imminent physical harm.”

But Eaton said that in her experience, Meta will only respond to complaints about these groups when the media gets involved.

Meta’s media relations team did not respond to requests for comment for this story. ‘There is no treatment or cure for autism’

Eaton started joining these private groups not long after her son was diagnosed with autism. She was looking for online support, but quickly became curious about the treatments being promoted in Facebook communities for parents.

“That's when I saw some really disturbing things,” she recalled. “It upset me because there is no treatment or cure for autism. It's a lifelong neurological condition, and parents were being misled.”

During a recent video call with the IJF, she scrolled through the “OSR Cream for Autism” group, where until very recently, parents could order a two-month supply of the product. The group’s admins boasted that it could be shipped to any country, and advised buyers to rub the cream on the thin skin under their children’s arms.

Some members who claimed to have bought the cream posted about seeing improvements in their children.

But others noted some troubling possible side effects. Apart from the claim of fingernail loss, some asked if aggression, self-injuring behaviour, impetigo, sleep disruption and cold-like symptoms might be related to the cream.

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The Canadian Facebook account listed as a group administrator did not respond to requests for comment made by email, Facebook or Instagram.

According to the group’s admins, the active ingredient in OSR cream is emeramide, also known as OSR#1, Irminix or NBMI, which was developed as an industrial chemical designed to remove heavy metals from soil and mining runoff.

They said they imported emeramide from China, and then mixed it with an industrial solvent called DMSO (dimethyl sulfoxide) as well as pluronic lecithin organogel, a chemical that allows drugs to absorb through the skin.

None of the purported ingredients are approved for sale to the general public in Canada.

Health Canada spokesperson Karine LeBlanc told the IJF that selling unauthorized health products online is illegal, but without access to the Facebook group, there wasn’t enough information to say whether this cream is a health product.

“In Canada, emeramide and pluronic lecithin organogel are not authorized as drugs nor natural health products,” LeBlanc wrote in an email.

DMSO, she added, is only available by prescription for treatment of chronic bladder pain. “It is illegal to sell dimethyl sulfoxide to the general public and it can only be administered under medical supervision,” she said.

On Jan. 6, the OSR group’s admins posted that they had been forced to stop production and sales because of ongoing problems with importing the ingredients, but pointed members to another Facebook group where the product could be purchased. ‘Dietary supplement’ or unapproved drug?

OSR was first trumpeted as a treatment for autism nearly two decades ago.

News reports suggest an American chemistry professor named Boyd Haley — known as an outspoken proponent of the disproven claim that vaccines cause autism — was marketing OSR as a dietary supplement.

In 2010, the U.S. Food and Drug Administration issued a warning letter to Haley, stating that his product was actually a drug that had not been recognized as safe or effective. The letter pointed out that Haley had failed to warn buyers of the side effects he’d observed in his own animal studies, which included anal leakage, “abnormalities of the pancreas” and rapid increases in lymph node cell growth.

Today, Haley is listed as the chief scientist for a company called EmeraMed, which promotes emeramide as a potential treatment for mercury toxicity. Haley did not respond to requests for comment.

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EmeraMed’s interim CEO, David Kennedy, told the IJF the company is aware of knockoff emeramide being produced in China, but emphasized that the chemical is not approved for human or animal use.

Posts in the OSR group say their emeramide is manufactured by a company called Fandachem and the final product is assembled in California. A Fandachem salesperson named Stephen Sun said his company is a chemical supplier and is not aware that its products are being used for medical reasons.

“All chemicals supplied by us are for research purpose ONLY. We never suggest the buyers to use in medical use. We know nothing about medical use,” Sun wrote in an email. ‘Treating the child like a broken version of normal’

Developmental pediatrician Dr. Melanie Penner said she hears about unproven autism treatments nearly every day at her clinic at Holland Bloorview Kids Rehabilitation Hospital in Toronto. She’s grateful parents are turning to her with their questions.

“I think that's far better than the alternative of a family just kind of deciding to try it out without informing their health care provider,” she said.

Often these treatments are based on encouraging results from animal studies or extremely small human trials, which have been hyped up without going through the full scientific pipeline to prove they’re safe and effective, according to Penner.

“Right now, we don't have any evidence that there is anything that you can put in your body, put on your body that addresses the core features of autism — and certainly not that would be a cure for autism,” she said.

Anne Borden King, an autistic advocate in Ontario, explained that parents are very vulnerable to anyone who offers answers or solutions related to autism because we know so little about the condition and what causes it.

“They feel like they're being responsible and they're medically treating their child. The thing is, they’re treating the child like a broken version of normal,” King said.

“If you want a child to have confidence, resilience — all of the qualities that you really need to have — you really can't just be constantly pushing this message at them that they're broken and that they need to be fixed.”

In Penner’s clinic, the focus instead is on finding ways to make the lives of autistic children a bit easier.

“It is not about finding a cure for autism. It is about finding a way to help that child build specific skills that they need,” she said. Time to stop playing ‘whack-a-mole’?

UBC professor Tworek was part of the expert advisory group behind the federal government’s Online Harms Act, and argued that some provisions in the now-dead bill could have helped prevent the sale and promotion of risky health products on platforms like Facebook. That includes demanding greater transparency from social media companies about how they’re enforcing their own standards and requiring them to develop digital safety plans and reliable systems for reporting scams and harmful material.

The goal, she said, was “trying to get platforms to actually think more systematically about these sorts of issues,” rather than playing “whack-a-mole” when problematic ads make the news.

Tworek acknowledged that regulations won’t solve the problem completely and any solution will require buy-in from governments around the world, but said that making a difference is not impossible. She pointed to anti-spam laws that have helped filter out the scam emails that used to be ubiquitous in Canadians’ inboxes.

“It's not that people don't get scammed, but I got a lot less spam in my inbox than I did, say, 10 years ago,” she said.

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In the meantime, Eaton has no plans to stop exposing these risky treatments.

“I'm tired. I've been doing this for over a decade and there's things that I would much rather be doing, but until somebody else takes the reins and makes some sort of effort at stopping this, then I feel like I have an obligation to continue because no one's going to help these kids,” she said