How online crowdfunding supports cancer quacks (part 2)

I’ve been blogging more or less continuously for over 14 years now, an observation that hit me at 4 AM Saturday morning after I found myself stone cold awake and unable to go back to sleep. I don’t often suffer from insomnia, but when I do, it usually doesn’t take me long to realize that, for whatever reason, I’m not going to get back to sleep for a while and hence the futility of trying, particularly when the thoughts are swirling and dancing in my mind, flitting from one topic to the next. So, groaning, I decided to get up and do…something. Rather than just surf the Internet, peruse social media, watch TV, or read, I decided to get a head start on this post, because what else was I going to do at 4 AM on a Saturday morning, with sunrise still over four hours away? It’s a topic that over the last year or so has finally, finally, finally been getting some play in mainstream medical journals and news outlets. I’m referring to crowdfunding for quackery and the article in the most recent Lancet Oncology by Jeremy Snyder and Tim Caulfield entitled “Patients’ crowdfunding campaigns for alternative cancer treatments.” (Note that, although Lancet Oncology is behind a paywall, this article is free if you register; so you can read it if you don’t mind registering.)

The last time I addressed this topic, it was in the context of a study by The Good Thinking Society published four months ago that examined crowdfunding platforms and how they are used for cancer quackery in the UK, with the primary beneficiary being the Hallwang Clinic, an alternative cancer clinic in Germany that I’ve written about before to discuss the deadly false hope that its doctors market to cancer patients. Before that, over at Science-Based Medicine Jann Bellamy took note of a study earlier this year that tried to estimate how much dubious crowdfunding is going on for what can only be described as stem cell quackery, as did yours truly. The bottom line is that crowdfunding platforms like GoFundMe (which is by far the dominant one) have facilitated the ability of desperate patients with serious diseases like cancer to raise huge sums of money for quackery. The Good Thinking Society made some recommendations on how to cut down on the abuse of these platforms that could represent a good start but, unfortunately, are likely to be very difficult to implement.

Crowdfunding for homeopathic cancer treatments

One problem with the literature thus far has been the paucity of studies how crowdfunding is used to promote pseudoscience. In this case, Snyder and Caulfield decided to look at crowdfunding campaigns for cancer treatments that were undeniably quackery, specifically, homeopathic cancer treatments, a subset of what I like to refer to as The One Quackery To Rule Them All. It’s a descriptive study, for sure, but it’s highly useful information. Except for one major issue I have with it, it’s a strong addition to the literature.

Crowdfunding for cancer has been studied before, first, as I mentioned above, by the Good Thinking Society in a study in The BMJ published in September, the one that I blogged about. The primary limitation of that study, of course, was that it was limited to the UK. In addition, although not the primary topic, the issue of crowdfunding for cancer quackery was also part of a broader analysis study published in JAMA in October that examined crowdfunding for five forms of quackery for different conditions: homeopathy or naturopathy for cancer, hyperbaric oxygen therapy (HBOT) for brain injury, stem cell therapy for brain injury and spinal cord injury, and long-term antibiotic therapy for “chronic Lyme disease.” Both analyses found disturbingly large numbers of people asking for large sums of money for unproven and disproven treatments.

So let’s dig in to what is an important, albeit flawed, study to find out what it adds to the subject. Here’s what Snyder and Caulfield did:

On June 8, 2018, we searched the crowdfunding platform GoFundMe for medical crowdfunding campaigns that included the words “cancer” and “homeopathic”, “homeopath”, or “homeopathy” using the platform’s search engine. We used variations of “homeopathy” to identify campaigns for clearly unproven cancer treatments. This process identified 220 unique campaigns.

For each campaign, we recorded information about the amount of money requested and pledged, number of donors, number of Facebook shares, location of the campaign host, date the campaign was initiated, recipient’s underlying medical condition, rationale for seeking CAM cancer treatment, alternative treatments (including those other than homeopathy) sought, activity claims made, and information about whether the recipient had died. For campaigns that had not recorded the recipient’s death, we searched obituary records and recorded when there was adequate personal information for the recipient.

It’s an interesting choice to examine only campaigns by patients looking to use treatments that include homeopathy. The reason for such a choice is obvious. Homeopathy is so utterly implausible in its tenets and methods so as to be reasonably considered, for all practical purposes, impossible. It is truly The One Quackery To Rule Them All. Consequently, there should be little argument over whether this is a worthless treatment, at least among the science-based community. Homeopaths will likely howl, but who cares if they do?

The number of campaigns Snyder and Caulfield found is surprising, even for me, given that they had limited the scope of their search to homeopathy for cancer. Of course, I know from long experience from looking at such campaigns that it’s rarely just homeopathic treatment being sought. Usually the alternative cancer clinics and practitioners to which these patients are lured offer a veritable cornucopia of quackery, with homeopathy being just one of many forms of quackery being used. Some, like Hallwang and many Mexican alternative cancer clinics, tout a “best of both worlds”—yeah, right—combination of conventional and alternative therapies. Some, like Hallwang and a lot of the German alternative cancer clinics, add legitimate experimental therapeutics that are as yet unproven for the indications for which they’re being used to the mix. One example is 3-bromopyruvate (3-BP), an experimental drug designed to target the Warburg effect that’s in development for cancer treatment but unproven in humans, not that that stopped a naturopath named Klaus Ross from using it to treat cancer. Unfortunately, 3-BP is fairly likely to have been responsible for the deaths of three cancer patients. Of course, Hallwang Clinic, being in Germany, also includes homeopathy with its other treatments, be they conventional, unproven experimental therapeutics, or alternative. Basically, utilizing experimental therapeutics off of a clinical trial in the manner that clinics like Hallwang do (giving them with no regard as to whether there is a legitimate reason to try an experimental drug off-protocol and charging big bucks for them) is highly unethical. Personally, I view it as health fraud.

One of the interesting (to me, anyway) findings of this descriptive study was the list of reasons why patients chose alternative medicine for their cancer. Snyder and Caulfield reported that they found three categories of rationales for seeking alternative cancer treatment: “individuals who want to try every available treatment and who are using it to complement traditional treatment; individuals who chose to forgo traditional treatment because of fear of its effects or skepticism about its activity; and individuals who cannot pursue traditional treatment for financial or medical reasons but do not wish to forgo treatment.” As I read that latter category, I couldn’t help but think first: Only in America! Then I thought a little more and realized that there was also a major problem with how the third category was defined. Indeed, it is the key flaw in this study. See if you can figure it out before I get to discussing it.

So let’s unpack the findings. First:

186 (85%) of 220 campaigners were located in the USA, 23 (10%) in Canada, eight (4%) in the UK, and one each in Germany, Ireland, and Spain. They requested US$5 795,602, and were pledged $1,413,482 (24% of the total requested) by 13,621 donors. These campaigns were shared on Facebook 112,353 times. Campaign recipients were a very ill group, as evidenced by the fact that at least 62 (28%) had died following the start of their campaigns.

I could be wrong, but my guess is that the percentage of patients who died following the start of their campaigns is likely higher than 28%. I base my speculation on my experience examining alternative cancer cure testimonials and how, these days, crowdfunding campaigns often serve a similar marketing purpose as testimonials did in the old days. As I noted when I discussed Rigvir, the testimonials often remain on websites (and GoFundMe pages) long after the cancer patient has either died or started to deteriorate. Retired Australian cancer surgeon Peter Moran once noted that alternative cancer cure testimonials “have an afterlife,” adding that “I don’t think I have ever seen one retracted when the claims later proved false or the patient died, as is usually the case whenever someone tries to treat established cancer with alternative methods alone.” (I can recall only one or two, for instance, Cassandra Callender, but it wasn’t the quack—Ty Bollinger—who recanted. It was her by giving up the quackery and accepting science-based oncologic care.) Whenever I’ve investigated such testimonials, I’ve usually had to search to find whether the patient was alive or dead, and often I couldn’t determine the answer.

As for the amount of money, the total amount requested divided by the number of campaigners comes out to $26,344 per campaign, which is actually a lower mean than I would have predicted. It’s still a lot of money, and, as I’ve written about on multiple occasions, many patients are seeking hundreds of thousands of dollars. (I wonder what the median was.) After all, treatment at the Burzynski Clinic routinely approaches or even surpasses $300,000 after several treatments, with Stanislaw Burzynski‘s monthly “medical management fee” running around $10,000 a month, while the patients at Clínica 0-19 routinely rack up similar levels of fees, with one family having spent $700,000 (!) for treatment.

Not surprisingly, homeopathy wasn’t the only treatment sought by patients in these crowdfunding campaigns. Snyder and Caulfield found that other treatments being used included dietary changes such as juicing and organic foods (n=85), supplements, vitamins, and herbal remedies (n=68), vitamin C infusions (n=30), oxygen, ozone, and hyperbaric treatments (n=24), acupuncture (n=20), cannabis-based treatments including cannabidiol (n=18), naturopathy (n=18), immunotherapy for unapproved settings (n=17), cleanses and detoxification (n=16), energy healing (n=13), hyperthermic treatments (n=10), traditional Chinese medicine (n=9), pH balancing and alkaline water treatments (n=9), mistletoe (n=8), Ayurveda, yoga, and meditation (n=8), light, ultraviolet, and infrared treatments (n=8), chiropractic treatments (n=6), lymphatic massage and drainage (n=6), massage (n=6), magnets (n=5), chelation therapy (n=5), essential oils (n=4), autohemotherapy (n=3), indigenous medicines (n=3), low-dose chemotherapy (n=3), osteopathy (n=3), and hypothermic treatments (n=2). I’m guessing that a large proportion of the “juicing” and dietary changes probably included the Gerson protocol, an alternative cancer treatment that involves 13 glasses a day of fresh, raw carrot/apple and green-leaf juices prepared hourly from fresh, organic fruits and vegetables; three full plant-based meals, freshly prepared from organically grown fruits, vegetables and whole grain; pancreatic enzymes and thyroid extracts; a boatload of supplements; and five coffee enemas per day. It is, unfortunately, one of the more popular forms of cancer quackery out there and frequently (mis)represented as “dietary treatment”.

Next up:

83 (38%) individuals used alternative treatments as complementary to traditional treatment. They wanted to try “every treatment method available”, often seeing homeopathic treatments as something that would “enhance” traditional treatments. 63 (29%) of 220 campaigns were for individuals who chose to forgo traditional treatment because of a fear of its effects or skepticism about activity. They often felt alternative treatments were a more natural alternative to “synthetic medicines”. Individuals who could not pursue traditional treatment for financial or medical reasons comprised 69 (31%) of the campaigns. A characteristic example of one of these campaigns included one recipient who saw alternative treatment as their “last and only hope”. Four (2%) of campaigns included two rationales and nine (4%) gave no rationale.

Obviously, the worst public health problem comes from the last two categories, patients who forego conventional therapy for quackery and those who choose quackery for financial reasons or medical reasons. These are the patients who are most at risk of dying unnecessarily or prematurely. Sure, it’s a waste of money, effort, and time to be adding quackery to conventional therapy, and it potentially harms patients, all of which constitute my objections to so-called “integrative oncology,” but in the end at least such patients are also getting effective science-based treatment for their cancers. Patients who forego science-based treatment for quackery are far more likely to die of their disease, either from untreated cancer or from delaying effective therapy until they realize that the quackery has failed, by which time their chances of survival are greatly diminished even with the best science-based treatment that exists.

Palliative care is conventional care

Now we come to the aspect of the study that truly frustrated me. To me it is the weakest aspect of the study. I’m referring to the last category of reasons for seeking alternative therapy, described by the author as either financial or medical reasons or not being able to “pursue traditional treatment for financial or medical reasons”. For the life of me, I cannot understand why Snyder and Caulfield chose to lump these two categories together, and it’s not really explained in the article. (I realize that the word count for this type of article is highly restrictive, but even so…)

Let me explain my problem with this category as defined for purposes of the analysis. There’s a huge difference between patients who chose alternative medicine because they couldn’t afford conventional therapy and those who chose it because they weren’t a candidate for conventional therapy (whatever that means). The former represent a failure of our health care system to provide needed medical care to everyone; the latter represents another issue altogether. Worse, lumping these two categories (financial and medical impediments to science-based treatment) leads to a serious issue with the estimates in the study.

Here’s what I mean. I would argue that a significant percentage of the patients in this category were misclassified in their reason for foregoing conventional therapy, specifically the patients who were described as not candidates for conventional therapy for medical reasons. I would further argue that these patients were in fact candidates for conventional therapy. All patients are candidates for conventional science-based therapy. Reading between the lines and calling on my experience analyzing alternative cancer cure testimonials, I gather that what’s really going on with these patients is that they were told that there was no curative therapy for which they were candidates; i.e., that their disease was terminal. I could be mistaken, but suspect that I am not based on how the authors describe a “characteristic example of one of these campaigns” as including “one recipient who saw alternative treatment as their ‘last and only hope.'” This is an absolutely classic reason given by patients with stage IV terminal disease for whom only palliative treatments are medically appropriate for choosing cancer quackery. I would thus argue that these campaigns should have been classified as the campaigns of patients who chose to forego conventional therapy in favor of alternative therapy, in other words as the second category rather than the third. The third category should just have been patients who crowdfunded for quackery because they couldn’t afford conventional treatment. Come to think of it, I would suspect that this reason is probably uncommon; patients who truly want to undergo conventional treatment would more likely try to use crowdfunding to pay for conventional treatment than to pay for quackery.

But let’s get back to the patients who are categorized as not being candidates for conventional therapy for medical reasons. No one—and I mean no one—is “not a candidate” for conventional therapies. It is, of course, true that many patients are not candidates for treatment with curative intent, whatever that treatment may be, but all patients are candidates for some form of conventional therapy. Consider it this way. If a patient is not a candidate for treatment with curative intent, then he’s a candidate for treatment with palliative intent, and palliative care is science-based conventional therapy. Indeed, I suspect that the patients who were not candidates for “medical reasons” consisted of either patients who were not candidates for treatment with curative intent from the beginning (e.g., were found to have widespread metastatic disease at the time of diagnosis, perhaps with other medical conditions that would make even palliative chemotherapy risky) or had disease that had progressed on therapy or relapsed, leading to their being treated with second- and third-line treatments and failing those too, to the point where it was no longer medically appropriate to continue to try to treat for cure. Again, medically, these patients are candidates for conventional therapy, just not curative. They are always candidates for palliative care. Always, always, always!

I know I’m repeating myself, but this is an important, and often overlooked, point about palliative care. Even doctors sometimes make this mistake of conflating palliative care with no care; i.e., “giving up”. Palliative care is anything but that. Indeed, treatment with palliative intent can be associated with in prolonged survival compared to patients going for last ditch heroic treatments that are far more prone to result in toxicity that shortens their lives (or at least diminishes the quality of their remaining life) than in meaningful prolongation of life. Most of the work suggesting that early palliative care can be associated with prolongation in survival has been in lung cancer patients but there is evidence for more than just that form of cancer. To be sure, not everyone is buying that palliative care prolongs survival compared to aggressive care, but at the very least it is reasonable to conclude that palliative care compares quite favorably in many ways to aggressive end-of-life treatment. Moreover, there is no doubt that quality of life is better with palliative care.

I know from experience that in alternative cancer cure testimonials, recommendations for palliative care only are often portrayed as nothing more than callously being told to “get one’s affairs in order” and/or to “go home and die“, while the alternative treatment being sought is portrayed as “my last chance.” Indeed, these are two of the main elements of alternative cancer treatment testimonials, one or both of which occur in pretty much every one. Of course, it’s understandable that a patient doesn’t want to be told that there is no curative treatment for his cancer and that he has only a couple of year—or even just months or week—to live. It’s entirely understandable that the patient might view a recommendation for palliative care as a recommendation for, in essence, “no treatment”. I will even concede that there are probably some facilities where the oncologists don’t fully appreciate the value of palliative services and might give such patients the impression of giving up. That doesn’t change the fact that palliative care is conventional care.

That’s just my pet peeve, though, albeit, I think, a very important and justified one. For the purposes of this study, the problem with the third category being defined as it was is that it almost certainly means that nearly all (or even all) of the patients who claimed not to be able to pursue treatment for “medical reasons” were misclassified. They should have been in the group who declined science-based care in favor of quackery. Thus, this misclassification has likely produced what is almost certainly a gross underestimation of the percentage of patients engaging in a crowdfunding campaign who were candidates for science-based conventional treatment but chose to forego it in favor of quackery. By how much? There’s no way to know without breaking down the patients in the last category, but, based on my experience analyzing alternative cancer cure testimonials, I strongly suspect that the number of patients crowdfunding for quackery because they can’t afford conventional care is probably the minority, particularly since the Affordable Care Act has greatly decreased the number of uninsured. Again, I could be mistaken about this, but I suspect I’m not. Moreover, as I mentioned before, patients who really want to undergo conventional therapy but can’t afford it would be far more likely to use crowdfunding to pay for conventional treatment than for quackery.

I would therefore argue that it is very likely more appropriate to combine into one group the 29% who chose to forego conventional treatment in favor of alternative therapy with the 31% who “could not pursue traditional treatment for financial or medical reasons.” In other words, it is very likely that around 60% of patients’ crowdfunding for cancer quackery are rejecting conventional therapy even though they are candidates for it.

Alternatively, the authors could have subdivided the third category, leaving four categories of treatments being funded through crowdfunding:

1. Alternative medicine to be added to conventional oncologic treatment (i.e., to fund the alternative medicine part of “integrative medicine”);
2. Alternative medicine instead of conventional oncologic treatment for cure;
3. Alternative medicine instead of conventional palliative care (patients with incurable cancer who are not candidates for aggressive treatment to prolong life, either due to having exhausted existing therapies, burden of disease, or medical comorbidities); and
4. Alternative medicine chosen primarily for financial reasons.

I’ll admit that I’m still skeptical that the fourth category even exists to a significant extent, but I’ll give Snyder and Caulfield the benefit of the doubt on that one because in general they’ve earned it. The result of this analysis would be very helpful, because it would stratify the patients who chose quackery instead of science-based medicine into those who are potentially curable and those who are not. There will probably be some cases that would be difficult even for an oncologist (or me) to assign to group 2 or 3 because the information provided on their crowdfunding page is insufficient, but that’s actually an argument in favor of my first proposed solution: just lumping together the potentially curable patients with the patients offered palliative care.

The problem of crowdfunding for quackery

Let me just say before I conclude that I don’t mean to be too critical of Snyder and Caulfield. Really, I don’t. Quite the contrary! Neither of them are clinicians, and they’ve done an excellent job quantifying and highlighting a problem that arose not long after websites and blogs did, and the one major flaw I found in their study is likely a consequence of their not being oncologists and perhaps their not having a 15+ year history deconstructing alternative cancer treatment testimonials. I only criticize their choice because I think it leads to a significant underestimation of the number of patients who choose to reject what conventional oncology has to say and act on that rejection.

Crowdfunding for quackery is a problem that started out small, given that setting up websites and blogs used to be difficult, but then was turbocharged by the rise of social media and crowdfunding platforms like GoFundMe. Indeed, the first time I remember taking note of the issue of crowdfunding quackery for cancer was in 2010. It was the case of Rene Louis, a patient with advanced thyroid cancer who started a website to raise money to go to Houston to be treated by Stanislaw Burzynski. She was also trying to set up a nonprofit foundation whose express purpose was to help others in her situation raise funds for treatment, both conventional and alternative. She was the first of many examples Stanislaw Burzynski’s patients who resorted to crowdfunding to pay his exorbitant fees. Indeed, it was through my interest in Stanislaw Burzynski’s cancer quackery that I came to be aware of the issue of crowdfunding. It was where I learned that crowdfunding has become, in essence, a major component of the business model of cancer quacks, stem cell quacks, and, increasingly, any quacks who charge exorbitant fees for their “services.” From there, I’ve seen this model in action in quack clinics as varied in location and type as Hallwang and Clínica 0-19.

In fact, the one major flaw in Snyder and Caulfield’s study reminds me that the rise of crowdfunding for quackery is a problem to which, like that of quackery in general, we in the medical profession have been far too oblivious for far too long. If a cancer clinician had been involved with this study, perhaps this would not have been an issue, although, to be honest, I’m not sure that even that would have prevented this misclassification, given how little attention most cancer clinicians pay to combatting cancer quackery and how even some doctors who aren’t advocates of palliative care might not argue with how the third group was defined—or even the existence of the group.

It also reminds me of the limits of blogging. Blogging about this problem is important; indeed, many have been the times that I’ve been approached by reporters about topics that I’ve blogged about. However, if you want to get the attention of physicians and be taken more seriously by mainstream media outlets, doing analyses like these is something we skeptics should be doing too. People like Tim Caulfield, Jeremy Snyder, Leigh Turner, Ford Vox, Arthur Caplan, Kelly McBride Folkers, Angela Turi, Michael Marshall of The Good Thinking Society, and a handful of others are leading the way. I also like to think that I’m doing my own small part as well.

So what do we do about this? In response to The Good Thinking Society’s report, GoFundMe claimed that it was already “taking proactive steps” in the US to make sure users of its site are better informed and will be doing the same globally over the coming months. However, I’ve seen no evidence thus far that GoFundMe has done a thing since September.

In the meantime, Snyder and Caulfield note:

In light of these findings, there should be concern that crowdfunding has the potential to exacerbate existing and create new problems within the market for alternative cancer treatments. Oncologists and other medical practitioners should be prepared to discuss these concerns with their patients. Cancer research agencies and patient support groups could raise the profile of these issues with public statements of concern around the role of crowdfunding in encouraging the use of unproven cancer treatments. Partnerships with crowdfunding platforms should also be sought to combat the worst forms of harm and misinformation transmitted via these campaigns.

These are good suggestions, but, although advocates are prodding GoFundMe to clean up its act with respect to quackery, I agree with Snyder and Caulfield. There is a profound financial conflict of interest that makes me doubt that GoFundMe will make anything more than cosmetic changes to its policy. That’s why I’ll repeat my suggested first step that could be implemented immediately and requires no judgment on the part of GoFundMe as to the scientific validity of a treatment or involvement of a skeptic or physician: Require that anyone crowdfunding for medical care reveal where he or she is being treated, who the doctors or practitioners will be, including whether they are medical doctors or not, and what specific treatments they wish to pursue. At the very least, that would allow skeptics like me to highlight crowdfunding for quackery and researchers like Snyder and Caulfield to categorize which quacks and quack clinics are profiting the most from crowdfunding. I would advocate banning crowdfunding campaigns for treatment by practitioners whose whole profession is quackery, like naturopaths, homeopaths, and the like. Unfortunately, though, I realize that even that seemingly reasonable suggestion might be difficult to implement, as state licensing of quackery could undermine such a policy. Patients and quacks could easily ask why, for instance, GoFundMe won’t allow crowdfunding for “licensed healthcare professionals”. That’s yet another reason why I oppose licensing naturopaths and other quacks.

Finally, Snyder and Caulfield left out one thing from these suggestions. Most physicians, even oncologists, are not familiar with the types and scope of unproven and disproven cancer treatments. That’s where skeptics, either as part of skeptical organizations or on their own, could be most helpful. Steve Novella has frequently pointed out that one role of the skeptic is consumer protection, to educate consumers to avoid the fraud of psychics, pseudoscience, and, yes, quackery. Here’s a perfect example where we could help.