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:
- Definitive or certain about efficacy
- Optimistic or hopeful about efficacy
- Definitive and Optimistic
- 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.