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Crowdfunding for unproven stem cell treatments: Taking advantage of the generosity of strangers to pay for quackery

With the rise of quack stem cell clinics, there has been a rise of crowdfunding campaigns to assist patients in paying for expensive stem cell treatments of unproven efficacy. Unfortunately, as a recent study shows, these crowdfunding campaigns nearly always oversell efficacy and ignore potential risks of the treatments, while making powerful emotional appeals.

Yesterday, I wrote about how the FDA is cracking down on two dubious stem cell clinics. Quack stem cell clinics are, of course, a topic I’ve discussed many, many times over the years, particularly the proliferation of clinics selling dubious and quack stem cell therapies using hard sell techniques. Even naturopaths are doing it. My post yesterday reminded me of one thing, and that thing is how these stem cell clinics peddle false hope, just like more alternative medicine clinics that I’ve written about than I can remember. It also reminded me of just how expensive these bogus stem cell treatments are. That’s why a story about crowdfunding that appeared today caught my attention:

They’re the tech-age version of donor jars at the diner: crowdfunding websites that aim to link ailing people with strangers willing to help pay for medical treatment. But new research suggests duped patients sometimes crowdfund to pay for bogus stem-cell treatments.

A study published Tuesday in the Journal of the American Medical Association focused on for-profit clinics that use direct-to-consumer advertising for costly unproven stem-cell treatments for conditions including chronic lung disease, Parkinson’s disease, multiple sclerosis and arthritis. Treatments are often marketed as cures or with a promise for vastly improved health.

This is, of course, an understatement, if anything. Elsewhere:

Crowdfunding campaigns for stem-cell treatments may be duping patients seeking relief and leaving donors out of pocket.

These campaigns, which encourage strangers to help fund medical procedures, fail to emphasize risks and often exaggerate efficacy, according to a new study co-authored by Jeremy Snyder, a bio-ethicist professor at Simon Fraser University.

“It’s a viral spread of misinformation,” he said. “They’re hyping the effectiveness of these treatments with no mention of risks whatsoever. Then all of it is being shared on social media, more than 100,000 times.”

Of course, it’s not limited to just stem cell quackery. I first took note of this phenomenon in a big way in the context of a cancer quack named Stanislaw Burzynski, who’s been selling his ineffective and toxic antineoplaston therapy for huge sums of money since the late 1970s. Many are the patients with advanced cancer whose plight (and crowdfunding campaigns to travel to the Burzynski Clinic in Houston) I’ve written about since 2011. Indeed, a rollcall of some of their names depresses me to contemplate because nearly all of the people on the list are dead, and many of them died in very unpleasant ways after having desperately scrambled for hundreds of thousands of dollars (or pounds, given Burzynski’s propensity to market to the UK when the NHS refuses to pay for an unproven treatment): Rene Louis, Shana Pulkinen, Jessica Marie Hahn, Kelli Richmond, Olivia Bianco, Billie Bainbridge, Rachael Mackey, Amelia Saunders (whose father actually wrote to me), Seán Ó’Laighin, Hannah Bradley (one of the few still alive), Laura Hymas, Sheila Herron, Stephanie O’Halloran, Liza Cozad (wife of Sammy Hagar’s drummer David Lauser), and McKenzie Lowe. If that’s still not enough, Bob Blaskiewicz has chronicled many, many more stories of Burzynski’s preying on cancer patients, many of which include a crowdfunding campaign.

However, Burzynski, although he is unfortunately still too successful in inducing the families of desperate cancer patients to raise hundreds of thousands of dollars to spend at his clinic, is old school. Antineoplastons might have seemed novel in the 1980s, but these days they don’t capture the public imagination the way they did back when Burzynski was appearing on TV with Sally Jesse Raphael. That’s why more recently I’ve been seeing crowdfunding campaigns looking for funds so that patients can go to German alternative medicine cancer clinics like Hallwang, which has lured a number of primarily European patients with cancer, including one famous actress. Then there’s Rigvir, a “virotherapy” from Latvia that encourages the same sort of crowdfunding as stem cell clinics for a treatment that is just as useless as antineoplastons. Then there are fundraising campaigns by the parents of patients with autism who believe that vaccines caused it and want to undertake “autism biomed” quackery.

But all those treatments are old, particularly Burzynski’s. Stem cells are new; they’re hip; they’re happening; they’re now. There’s no doubt that they theoretically have enormous potential as a treatment for disease There’s just one problem. The number of conditions that they’ve been shown to be effective in treating is thus far quite small, which means that the indications for which stem cell clinics claim they are effective are nearly all, scientifically speaking, bogus indications, and many stem cell companies have a highly dubious history. One in particular, Stemedica, has a history of selling water woo.

So let’s take a look at the study itself, published in JAMA as a research letter, which is a short format used for focused studies that don’t have enough findings to require a full research article to report. The study is by Jeremy Snyder and Valerie Crooks at Simon Fraser University and Leigh Turner at the University of Minnesota. They looked at 351 US-based businesses engaged in direct-to-consumer marketing of stem cell treatments of one form or another. They searced from August 2017 to December 2017 for mentions of these businesses on the crowdfunding platforms GoFundMe and YouCaring, which, they note, are the two largest charitable crowdfunding platforms. An external search was used to verifying the results and find additional campaigns. Then, for each campaign the authors extracted information on the amount of funding requested and pledged, the number of donors, and the number of shares on Twitter and Facebook. They also analyzed the statements about the risks and efficacy of these treatments as perceived by the patients and families behind the campaigns. Efficacy statements were classified thusly:

  1. Definitive or certain about efficacy
  2. Optimistic or hopeful about efficacy
  3. Definitive and Optimistic
  4. No statement about efficacy

And here’s what they found:

As of December 3, 2017, our search identified 408 campaigns (GoFundMe = 358; YouCaring = 50) seeking donations for stem cell interventions advertised by 50 individual businesses. These campaigns requested $7,439,308 and received pledges for $1 450 011 from 13 050 donors. The campaigns were shared 111,044 times on social media. Two campaigns were duplicated across platforms but shared separately on social media. Of the 408 campaigns, 178 (43.6%) made statements that were definitive or certain about the intervention’s efficacy, 124 (30.4%) made statements optimistic or hopeful about efficacy, 63 (15.4%) made statements of both kinds, and 43 (10.5%) did not make efficacy claims. All mentions of risks (n = 36) claimed the intervention had low/no risks compared with alternative treatments.

This jibes with what I’ve observed in general about crowdfunding campaigns to pay for alternative medicine treatments for cancer. The authors note that they probably underestimate the number of crowdfunding campaigns to pay for stem cell quackery, and that’s almost certainly true. However GoFundMe and YouCaring are the two biggest crowdfunding websites; so I’m pretty sure they probably found the vast majority of these campaigns.

The authors also note:

Crowdfunding campaigns for unproven stem cell–based interventions underemphasize risks and exaggerate the efficacy of these interventions. These findings suggest that medical crowdfunding campaigns convey potentially misleading messages about stem cell–based interventions. These claims may be especially powerful when embedded within compelling personal narratives. The situation parallels that of DTC marketing of unproven stem cell–based interventions, which has been shown to make hyperbolic claims about efficacy and minimize risks associated with their use.3-5

Although many publications examine DTC marketing by stem cell clinics, there is little research examining how individuals make sense of and act on such advertising claims. These findings suggest that individuals interested in purchasing unproven stem cell interventions may reflect DTC marketing messages in crowdfunding campaigns, thus potentially helping propagate them.

Although GoFundMe does not publish its total number of health-related campaigns, YouCaring reported (https://www.youcaring.com/fundraisers/medical-expenses) 62,739 campaigns on February 26, 2018; thus, campaigns for stem cell therapies represent a small percentage of their overall campaigns.

No doubt this is true, but it would be interesting to look at crowdfunding for more than just stem cell treatments. The difficulty would be, of course, in differentiating crowdfunding for medical expenses for legitimate, science-based treatments, which is all too common in the US given that medical bills are a major cause of bankruptcies here, from quackery. It’s not always obvious, because, in my experience, it’s not uncommon for the people running some of these crowdfunding campaigns not to identify the treatment for which they are raising money in sufficient detail to tell if it’s science-based or not. Be that as it may, this study does a service in providing an estimate of the scope of the problem of patients raising money for quack stem cell treatments.

It should also be noted that the very business models of these quack stem cell clinics and alternative medicine cancer clinics has come to depend on crowdfunding. The reason is that they charge large sums of money for their treatments, and the vast majority people just don’t have tens or hundreds of thousands of dollars readily available to pay for their treatments. So in the past their options included draining their bank accounts, maxing out their credit cards, getting loans from family or friends, and, for some of them, even selling their house and other possessions. The rise of crowdfunding for these clinics has made these treatments available to more people, who understandably use their nearly always compelling personal stories to drive donations. Worse, crowdfunding for legitimate medical treatments often falls short and depends on the social media skill and how well the patient’s story is told, which means that the crowdfunding playing field is far from level.

I don’t blame the patients or their families. They’re desperate. I do, however, blame the clinics making false (or, most charitably, highly exaggerated) health claims and the crowdfunding companies that turn a blind eye to the scams people are using their platforms to raise money for. I hope that this study, and perhaps others to follow, will begin the conversation over what responsibility crowdfunding sites have to those who use them not to aid them in being conned.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

15 replies on “Crowdfunding for unproven stem cell treatments: Taking advantage of the generosity of strangers to pay for quackery”

the crowdfunding companies that turn a blind eye to the scams people are using their platforms to raise money for

A 5% commission from the funds raised covers a lot of selective blindness.

That would be several thousand dollars (or in some cases more) for each of these fundraising campaigns.

It’s probably unreasonable to expect them to detect every scam that uses their platform, but several thousand dollars ought to at least buy them some due diligence, such as Googling to find out whether any of these clinics have a history of scamming patients.

re ” due diligence”

Can it be that the halcyon days of the Wild West internet are coming to an end?

It’s so “bad” that Adams has to start his own video site.

I read that GoFundMe doesn’t charge a percentage for personal fundraising and that YouCaring also doesn’t take a percentage, so I don’t think it’s a money thing. (REad over at SBM.)

Adding to the not blaming the patients – many of them are likely not well placed to distinguish real treatments, or treatments that are still in early stages, from fake ones.

A few days ago I read an article about some fundraising for a guy with a braintumor, Not for any last treatment, but to record the last album by him and his band. That is some crowdfunding I can agree with.

Crowdfunding sites don’t adhere to their terms of use. Case in point: last year an anti-vaccine physician in Arizona announced plans for a school for unvaccinated children, with a fund-raising campaign at indiegogo to get it off the ground (https://www.indiegogo.com/projects/eco-project-from-the-drs-wolfson-kids#/). I wrote Indiegogo to inform them this campaign violated their terms of use, which prohibits campaigns that “cause harm to people”. They thanked me for my complaint and did nothing (on the bright side the campaign only raised $175 of its $1,000,000 goal).

Orac, I know this isn’t tied to this article, but anti-Gardasil quackery is going strong in my family, they talk about “300 South American girls” who developed Guillain–Barré and other problems shortly after taking the vaccine, I think they cited an article from something called LifeSiteNews. I want to steer them in the right direction, but they just call me a crazy brainwashed Pharma shill it I do.

LifeSiteNews

Ah, far-right Catholic Theocrats, noted at Snopes for fabrications. They share the usual theocratic beliefs that (a) Gardasil stops God from punishing sex, and (b) it’s therefore OK to make stuff up about it.

Desperate people are easy to exploit, and those suffering from major and/or fatal conditions are even more susceptible. And praiseworthy sympathy for those in desperate straits can easily be channeled into the pockets of them frauds who exploit them.

Fortunately, our libertarian friends tell us that the magic of the free market(TM) will eventually put these quacks out of business without the stifling influence of government regulation or oversight, right? Whoops, Maybe not.

[…] Then there’s the fundraising. So. Much. Fundraising. The fundraising happens on Facebook. It happens on GoFundMe. It happens in the media, particularly in tabloids like the Daily Mail, which frequently post glowing stories about children like Nguyen that help their families to raise still more money. Just like the Burzynski model, Clínica 0-19’s business model relies on the existence of these crowdfunding sites. Without them, few families could manage to fundraise so prodigiously. Crowdfunding sites like GoFundMe and YouCaring are a testament to the inherent generosity and goodness of many people, of their desire to help their fellow human beings, but there’s a dark side. That dark side is that the existence of such fundraising platforms makes the proliferation of clinics like Clínica 0-19 possible and far more profitable given that before only the rich could afford such clinics. It also makes the existence of quack stem cell clinics so much more lucrative, given the prodigious amounts of money that can be raised, as shown in a recent study. […]

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