YouTube Testimonials Lure Patients to Shady Stem Cell Clinics

[Original Post] Punch “stem cells” into YouTube and your first hit looks like something from a seventh-grade biology textbook. Number two features a Duke sports medicine doc injecting a syringe of bright red liquid into a heavily tattooed shoulder. Number three, with more than 2.5 million views, is a mic-ed up Mel Gibson regaling Joe […]

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[Original Post]

Punch “stem cells” into YouTube and your first hit looks like something from a seventh-grade biology textbook. Number two features a Duke sports medicine doc injecting a syringe of bright red liquid into a heavily tattooed shoulder. Number three, with more than 2.5 million views, is a mic-ed up Mel Gibson regaling Joe Rogan with tales about his 92-year-old father’s “miraculous recovery” following a trip to Panama to get umbilical cord stem cells. In the more than 11,000 comments on the video, many tout their own experiences with stem cell injections. Others leave their emails and phone numbers, hoping for a last-ditch shot at survival for themselves or their family members with leaky hearts and stage four cancer diagnoses.

Since the mid-2000s, clinics have been selling expensive, unproven stem cell treatments to any patient desperate enough to believe their claims of cures for everything from arthritis to autism. At first, these clinics operated almost entirely overseas. But for the last decade, they have flourished in the US without much of a fight from regulators, even as the experimental therapies they hawk have been tied to serious infections, several cases of blindness, and one patient’s death.

But the feds are no longer sitting on the sidelines. Earlier this month, the US Food and Drug Administration won a landmark case against US Stem Cell, a company that manages three large clinics in Florida where at least four patients were reportedly blinded. The June 3rd injunction ruling empowers the agency to stop the private clinic from injecting patients with a cellular cocktail centrifuged down from their own liposuctioned fat. That controversial practice is common at clinics across the country. Barring the decision being overturned on appeal, it cements the FDA’s position that anyone doing that is illegally peddling an unapproved drug.

Over the last two years, the FDA has been escalating its enforcement of such clinics. It has also sued a collection of clinics based mostly in California called the Cell Surgical Network (that case is ongoing). But it faces an uphill battle against the viral marketing tactics that the burgeoning stem cell industry employs to keep patients pouring in.

“Rather than melting away, business is growing. That’s the anomaly,” says Leigh Turner, a bioethicist at the University of Minnesota who studies the stem cell industry. In 2016, he calculated that 570 clinics were offering unproven stem cell treatments in the US. By 2018, he reported in a study that the number had jumped to 716. Today, Turner feels comfortable saying that the US has crossed the 1,000-clinic threshold. “Despite the rule changes and the public hearings and more inspections and warning letters and the lawsuits, the market is still expanding at a rapid rate.”

It’s possible that there’s just a lag; it could take years for those FDA ripples to reach the market. More likely, says Turner, is that there’s too much money to be made with too few potential consequences. The FDA can’t sue all 1,000 clinics into submission, and whatever monetary penalties the agency might impose for non-compliance are likely to be recovered quickly by clinics charging between $3,000 and $15,000 per treatment.

Then there’s the ease with which stem cell clinics reach potential patients online. They advertise their treatments directly to customers almost exclusively over the internet, flooding their Google searches with vague yet hopeful promises. Often, this involves the patient testimonial video—one of the most successful marketing strategies employed by stem cell clinics. You can find them on clinic websites, blogs, Facebook groups, and YouTube.

A study of 159 of such videos, published this week in Stem Cell Reports, found that in 95 percent of them patients effused praise for how stem cells had helped them—reducing pain, increasing mobility, stopping seizures, regaining strength, and improving vision, among other effects. Only 10 percent of videos mentioned potential risks. On average, the videos drew an audience of 3,546 views. Most appeared very low-budget, but no special effects were required to convey the passion patients felt. They feature multiple sclerosis patients who once trudged with walkers holding them above their head in triumph and tearful parents unable to even blurt out how happy they are with the results of their children’s treatment.

The study authors wrote that by producing these highly personal, emotionally powerful videos and sharing them with potential patients, clinic providers can craft an appealing message and avoid dwelling on the downsides. “Compared with educational videos from reputable scientific organizations, videos featuring patient testimonials are likely to have a wider reach and significant impact on influencing health behavior,” they concluded. That’s a problem not because anyone suspects these patients are lying—they may really have felt much better after the treatments. But there’s no way of knowing if they’re just experiencing the placebo effect. Anecdotes make for compelling storytelling, but they’re not data.

YouTube itself has left its policies on such videos ambiguous. Under the section prohibiting videos that make exaggerated or deceptive marketing claims, the company gives the example of a “miracle treatment that can cure chronic illness such as cancer.” In some testimonial videos reviewed by WIRED, patients explicitly refer to stem cells as a miracle, while others resorted to Biblical analogies about Jesus curing the blind. A representative from YouTube did not respond to WIRED’s inquiries by the time of publication.

Flouting the rules wouldn’t exactly be out of character for the vast majority of stem cell clinics. At least a dozen and a half have registered “patient-sponsored” clinical trials, studies that masquerade as legitimate science while still collecting hefty fees. Another common strategy for creating a superficial sheen of scientific rigor involves having stem cell clinic patients fill out quality-of-life surveys and publishing the results in pay-to-publish predatory journals.

That’s why researchers like Turner are only very cautiously optimistic that the FDA’s latest victory will result in any long-term change. “It’s a meaningful step and I’m heartened that people are paying attention,” he says. “But once the spotlight wanders away, the marketplace will still be there. And from what I can tell, the harms that flow from it all seem to be getting worse.”


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