Over the last couple of years, I’ve found myself writing more and more about the use of crowdfunding by desperate patients who want to pursue unscientific and downright quacky treatments for serious conditions. Usually, such patients have cancer that either can’t be treated for cure (but can be treated for palliation) or that can’t be treated for cure without the use of surgery, chemotherapy, and radiation (a.k.a., the “cut, poison, burn” that cancer quacks like to refer to). Such pleas are often portrayed as insurance companies or the NHS refusing to pay for a revolutionary treatment that is described as the patient’s last chance to live, and the crowdfunding platform GoFundMe is frequently involved, as are certain quack cancer clinics. The second most common is probably crowdfunding for bogus stem cell treatments. Of course, I’ve been writing about crowdfunding for cancer quackery for a long time, going all the way back to the days before the rise of social media, back when most crowdfunding was done with blogs and media campaigns, when cancer quack Stanislaw Burzynski was encouraging patients to use every means to fundraise to afford his treatments. More recently, antivaxxers have tried to use the platform to fundraise for various purposes, Larry Cook in particular. The question then becomes: What to do?
The problem of unregulated crowdfunding
As a result of incidents like these, over the last couple of years, crowdfunding platforms have come under more and more scrutiny for facilitating fundraising for patients to waste in quack clinics. More recently, several months ago GoFundMe announced that it would no longer host antivaccine fundraising campaigns, nor campaigns to go to a certain German cancer clinic that I’ve written about on several occasions. Unfortunately, that appears to be about all GoFundMe has done thus far, which leads me to an article published in the November/December issue of the Hastings Center Report by Jeremy Snyder and I. Glenn Cohen, “Medical Crowdfunding for Unproven Medical Treatments: Should Gofundme Become a Gatekeeper?” In it, Snyder and Cohen argue that GoFundMe has not gone far enough (which is inarguably true), although I’m not sure their prescription is as feasible as they think.
They begin by noting:
GoFundMe now prohibits crowdfunding campaigns that spread medical misinformation or undermine informed medical decision‐making, but it has not tried to regulate the much more common campaigns to fund unproven medical interventions. It should. The campaigns mislead donors, spread misinformation, and may even harm those receiving the money.
As noted in the article, GoFundMe is the dominant platform for crowdfunding, and:
Roughly one‐third of the money raised by GoFundMe is for the medical category, with over 250,000 medical campaigns raising more than $650 million per year.1 GoFundMe, coupled with other crowdfunding platforms, therefore has the potential to greatly impact access to medical services.
Although these are good first measures, they don’t go nearly far enough. There are still a number of crowdfunding campaigns on GoFundMe. For example, a search for “cancer” and “naturopathy” brought up a number of crowdfunding campaigns.
For example, this family is seeking to raise $30,000:
My husband Ray has colon cancer, and after many conventional treatments and much research, we’ve realized that naturopathic treatments are now the best option. Since medical insurance will not cover the cost of naturopathic treatments, we are seeking financial assistance through this account.
There are many alternative treatments that hold great promise. We will be attending one or two of the best clinics in the country, and perhaps even Mexico.
Fortunately there is hope and that hope comes in the form of a combination of complementary and alternative treatments. These include nutrition based natural treatments, mind-body modalities, energy work, eastern medicine and acupuncture and other science-based modalities like German New Medicine that have proven to help cancer patients defy the odds and experience spontaneous healing and radical remission.
German New Medicine is a particularly egregious form of quackery that posits an unresolved psychic conflict as the cause of cancer and states that cancer is a reaction to that conflict. Also, according to German New Medicine, you don’t die of cancer itself. Rather, according to Ryke Geerd Hamer, the man who invented German New Medicine, if someone dies during the conflict-active phase of disease, it’s because of “energy loss, weight loss, sleep deprivation, and emotional and mental exhaustion”. He further claimed that the “stress of receiving a cancer diagnosis, or being given a negative prognosis, is often enough to deprive a person of their life-force” and that conventional cancer treatments “only accelerate the downward spiral”.
And still another:
Alternative treatments must be paid upfront before service is rendered. No insurance will cover these types of treatments. They are interested in utilizing Naturopathic /Holistic methods to help to strengthen his immune system and make his body stronger to fight the cancer disease & possibly prepare him for another surgery. Insulin Potentiation low dose Chemo (IPTLD) has proven very successful in many cancer patients, which is a Naturopathic alternative treatment they are highly considering. Some in-patient facilities cost as much as $100K to start.
Insulin potentiation therapy (IPT) is a particularly dangerous form of cancer quackery that involves using insulin to reduce a patient’s blood sugar level before low dose chemotherapy based on the idea that cancer cells are fed by sugar and that lowering blood sugar can render cancer more susceptible to lower doses of chemotherapy. Not only does IPT place the patient at risk for life-threatening hypoglycemia, but it also generally uses chemotherapy doses too low to be effective.
Here’s one more. It’s not a cancer patient this time, but rather a man with amyotrophic lateral sclerosis (Lou Gehrig’s disease), a devastating progressive (and fatal) neurodegenerative disease that most commonly strikes in late middle age, with an average survival time after diagnosis ranging from 2-4 years. He’s seeking a quarter of a million dollars for biological dentistry, acupuncture, chiropractic, thermography, chelation therapy, far infrared sauna, stem cell treatments, NUCCA chiropractic care, microcurrent therapy, Lyme disease tests, a boatload of expensive supplements, and more:
I need your help to #HaltALS. Through many hours of research and interaction with neurologists, biological dentists, holistic doctors, naturopathic doctors, chiropractors, acupuncturists, and neurosurgeons, I have learned that the treatments I need, the supplements I require and the foods I need to eat are incredibly expensive. And they are not covered by insurance.
As you might imagine, my heart breaks for these people, particularly the man with ALS. However, none of the treatments they are raising money in order to pursue is likely to do any good, and some (like IPT) can definitely do harm.
When last I took note of GoFundMe’s policy, a news story stated:
GoFundMe’s terms of service explicitly ban donations toward “products that make health claims that have not been approved or verified by the applicable local… or national regulatory body.”
Earlier this week, it banned campaigns that raise money to cover treatment by a controversial German cancer clinic that offers unproven “high-dose vitamin infusions” and “ozone therapy” treatments. GoFundMe told the Financial Times it would be “speaking to organizations and experts” in the U.S. and the U.K. to fight medical misinformation.
“We know we have a major role to play in big issues like this, and as we continue to grow… our policies will continue to evolve to make sure we are best serving people,” a spokesman told the newspaper.
The problem is, of course: Why doesn’t GoFundMe enforce its terms of service? After all, about a year ago, Jeremy Snyder and Tim Caulfield surveyed GoFundMe and found a whole lot of campaigns fundraising for The One Quackery To Rule Them All, homeopathy. These campaigns often featured other unproven and/or downright quacky treatments, including juicing and organic foods, supplements, vitamins, and herbal remedies, vitamin C infusions, oxygen, ozone, and hyperbaric treatments, acupuncture, cannabis-based treatments including cannabidiol, naturopathy, immunotherapy for unapproved settings, cleanses and detoxification, energy healing, hyperthermic treatments, traditional Chinese medicine, pH balancing and alkaline water treatments, mistletoe, Ayurveda, yoga, and meditation, light, ultraviolet, and infrared treatments, chiropractic treatments, lymphatic massage and drainage, massage, magnets, chelation therapy, essential oils, autohemotherapy, indigenous medicines, low-dose chemotherapy, osteopathy, and hypothermic treatments.
The ethical imperative to clean up crowdfunding
As Snyder and Cohen note in their most recent article, even ignoring the quackery, crowdfunding poses a number of ethical issues, including the undermining of privacy, widening health care inequities, and commodifying health care. In addition, as I like to point out, the people most likely to succeed in crowdfunding are those who are the most appealing, the most sympathetic, and who with their family have the resources and social media savvy to run a successful crowdfunding campaign. When you add in crowdfunding for unproven and/or quack treatments, the ethical issues become extremely problematic. Among the issues brought up in the paper:
- Misleading, incorrect, and/or incomplete information make “it unclear whether the campaigners and proposed recipients of these funds understand the evidence around the interventions’ safety and efficacy.” The vast majority of campaigns for quackery tout the quackery in extremely emotional and positive terms (e.g., “groundbreaking,” “my last chance,” “high cure rate”).
- This misinformation leads to concerns that donors are being deceived, as campaigners have an incentive to “emphasize and potentially exaggerate the efficacy and safety of the interventions they are seeking in order to convince prospective donors to financially support the campaign beneficiary.”
- Information from these campaigns is spread far beyond just donors and campaigners, thus contributing to the spread of medical misinformation on social media, thus allowing these campaigns to be shared and seen by potentially huge audiences.
- Crowdfunding facilitates access to harmful quackery that patients, without crowdfunding, might well not have been able to gain access to. These harms include harm from the quackery itself and harm from delaying or not accessing effective standard of care science-based medical treatment.
- Crowdfunding funds quacks and their clinics. This is indisputable. Indeed, as I’ve noted before, beginning with Stanislaw Burzynski, most quack cancer clinics have crowdfunding built into their business models, actively encouraging patients to use crowdfunding to raise the large sums of money needed to use the clinic’s services. Some even provide advice and assistance to patients in constructing effective crowdfunding campaigns.
One response to these ethical objections is to appeal to the autonomy of individuals. After all, competent adults have the right to choose (or refuse) any treatment they desire, as long as they understand the potential consequences. Similarly, appealing to the same principle, competent adults should be able to spend their money and donate to whatever cause(s) they see fit. The problem, of course, is informed consent. For that autonomy to apply, the information being given the adults in question has to be accurate. In the case of quacks and quack clinics, it is not, which has led me to coin the term (at least I think I coined it originally) “misinformed consent”, which is consent (or refusal) of a treatment based on misinformation and pseudoscience.
As Snyder and Cohen write:
However, there are obvious problems with this defense. As Daniel Patrick Moynihan quipped in a political context, “Everyone is entitled to his own opinion, but not to his own facts.” Based on the information included in these campaigns, there is good reason to doubt whether the people authoring them are well informed about evidence of the efficacy and safety of the unproven interventions they seek. Or they may exaggerate the efficacy and safety of these interventions to motivate giving to their campaigns, despite having a better understanding of the evidence around these interventions than is implied by statements in their campaigns. In so doing, they undermine the autonomy of donors and other members of the public who view and potentially support their campaigns. Finally, although autonomy is an important ethical value, it does not trump all other ethical concerns. Personal autonomy can be limited by others’ interest in autonomy and by other interests that can be harmed by one’s autonomous actions. Insofar as these campaigns are supporting the operations of businesses that engage in illegal activities, defrauding their customers, and potentially harming health, these campaigns lead to outcomes that justify prohibiting them.
This is my take as well. Misinformed consent is, in essence, fraud, with the patients (and donors supporting the patients) being defrauded to pay for treatments that don’t work based on misinformation. It’s grift, pure and simple. Steve Novella has in the past stated that skeptics should be viewed as consumer protection. We try to provide people with the tools they require to avoid being taken. It is, of course, not nearly as easy as unfortunately all too many in the medical profession think, some of whom dismiss such efforts as trivial, both in difficulty and importance. (Those who follow me on Twitter will know exactly whom I’m describing.)
Snyder and Cohen also note that those who run crowdfunding sites know that their sites are being used to spread misinformation and host unethical (and, in some cases, downright fraudulent) campaigns, but respond with a rather lame defense:
In response to these concerns, GoFundMe has stated, “Our role is to provide users with social fundraising tools to raise money for their cause or need. While we hope to be a helpful resource for personal fundraising, we believe it is not our place to tell them what decision to make. That said, GoFundMe is an open platform and ultimately it is up to the GoFundMe community to decide which campaigns to donate to.”20 The evidence, however, is clear that campaigners, recipients, and donors around these campaigns are not making informed decisions about these interventions and are undermining the ability of others to do so. Were the harm merely to the recipient of the funding, it would be one thing, but there are externalized harms to the donating public as well as to other onlookers, who may be deciding between conventional, well‐established therapies and those promoted by sites like GoFundMe. GoFundMe is thus complicit in these harms. It need not tell campaigners and donors “what decision to make,” but it should not enable the unethical practices and outcomes associated with the marketplace for unproven medical treatments.
This is a classic “blame the victim” defense in which GoFundMe tries to portray itself as a neutral host with no obligation to vet the information posted on its platform other than to make sure it isn’t raising funds for illegal scams—and then only when informed by someone else. In other words, GoFundMe seems to be saying, “It’s not up to me to check on these campaigns, but we’ll look into them if enough people report them or if we get bad publicity on account of them”.
What to do about GoFundMe and other crowdfunding platforms
Snyder and Cohen then go on to propose solutions. To their credit, before they do so, they note the difficulties in vetting treatments. First of all, as I’ve discussed on a number of occasions, vetting campaigns requires a lot of work. As Snyder and Cohen put it, such vetting would “impose a costly and difficult task on GoFundMe” and “would require crowdfunding sites to work with experts to evaluate claims and would certainly require some judgment calls”. For example, homeopathy is easy. It’s quackery. But what about the German clinics that offer conventional therapy plus a whole lot of quackery or offer unapproved therapy that is legitimate experimental therapy, but offer it outside the auspices of a properly configured clinical trial? What about the Mexican clinic that offers what could be a legitimate treatment, such as intraarterial chemotherapy directed to the brainstem of patients with diffuse intrapontine glioma, but have never bothered to do the clinical trials necessary to validate their treatment while nonetheless selling it as “experimental” therapy and publishing unconvincing crappy single-arm studies? Although evaluation of these clinics might sound straightforward, it’s not.
And what about quack stem cell clinics? Well, there’s this:
Such an undertaking is not impossible, but it is challenging. In some areas, there may be expert groups that could be deputized with review. Stem cell treatments, unfortunately a hotbed for misrepresentation, provide a glimpse of the difficulties involved in such review. In 2010, the International Society for Stem Cell Research attempted to offer an inquiry and review process wherein the organization would, on request, perform an evaluation of a stem cell clinic. As part of that review process, “clinics would be required to provide evidence of review and approval for human subject protection and regulatory oversight,” and clinics that did “not provide the information would be listed as undocumented.”21 However, ISSCR quickly suspended the plan after it received letters from clinics that threatened legal action for defamation.22
Having been at the receiving end of legal threats from a certain German cancer clinic for my posts here on SBM and elsewhere, I know the chilling effect the litigiousness of such clinics can have. Even the BBC is not immune.
So what approaches do Snyder and Cohen propose? Noting that in late 2018, GoFundMe had changed its policy from one of banning campaigns for “illegal drugs, narcotics, steroids, controlled substances, pharmaceuticals or other products that make health claims that have not been approved or verified by the applicable local and/or national regulatory body, or legal substances that provide the same effect as an illegal drug or other products that present a risk to consumer safety or any related equipment or paraphernalia” to one that bans crowdfunding on its platform for “drugs, narcotics, steroids, controlled substances, pharmaceuticals or similar products or therapies that are either illegal, prohibited, or enjoined by an applicable regulatory body; legal substances that provide the same effect as an illegal drug; or other products, medical practices, or any related equipment or paraphernalia that have been found by an applicable regulatory body to cause consumer harm,” they point out that the new policy provides a loophole for crowdfunding for unapproved drugs and treatments that promotes misinformation or even downright charlatanism. Why? Many unapproved treatments have never been declared to be harmful by applicable regulatory bodies. Thus, Snyder and Cohen propose reverting back to the previous policy and then:
Going one step further, crowdfunding could be permitted for interventions that a regulatory agency has considered for so‐called compassionate‐use or expanded‐access programs.25 This approach would create a white list of acceptable campaign uses and provide GoFundMe and other crowdfunding sites a straightforward decision metric—can the proposer of the crowdfunding point to the approval of the drug, device, or other treatment by a relevant authority? If yes, then allow it to be posted. If no, deny it.
Of course, this is very straightforward for drugs and devices, it’s less so for surgical procedures or for off-label uses of approved drugs and devices.
Another potential approach:
Alternatively, GoFundMe could rely on a blacklist of problematic and prohibited treatment types and providers. This blacklist could include specific procedures that have been found to be dangerous, as with some stem cell interventions. Unproven interventions for particularly vulnerable groups—such as so‐called gay conversion therapy, unproven interventions for minors, and unproven interventions for adults with cognitive limitations as in the case of brain injuries—could be blacklisted. Specific clinics that have received sanctions or cautions from regulators could be blacklisted. Crowdfunding platforms could develop such a blacklist on their own, but medical specialist organizations and regulators could provide much of the content and ensure objectivity in its development. Federal Trade Commission and FDA warning letters to specific providers and for specific treatments could be one source of content for the list, as could input from organizations such as the ISSCR and patient advocacy groups like the American Cancer Society. GoFundMe could also partner with other companies in developing these lists; for example, Google announced in September 2019 that it would no longer be accepting advertisements for non‐government‐approved interventions that imply that they are safe and effective at treating medical conditions.26 Blacklisted providers could seek to “appeal” to the company and provide additional information about safety and efficacy.
This approach is appealing, but would be difficult and likely expensive too. The problem is the same as the problem with regulating medical misinformation on Facebook and other social media platforms: Volume. There’s just so much of it. True, the volume on a site like GoFundMe would not be nearly as great as for Facebook, Twitter, Instagram, Google, etc., but it’s not by any means trivial. Here’s the tradeoff:
The white‐list approach has the benefits of restricting a wider range of unproven and potentially dangerous campaigns and of limiting the spread of misinformation on social media. However, it restricts the autonomy of both campaigners and donors and would raise the danger that GoFundMe would overreach when prohibiting campaigns for health‐related needs.31 A blacklist approach would work to prohibit the most ethically problematic campaigns but would have a more limited scope.
Personally, to me the whitelist approach, while imperfect, would have a more significant effect and would be worth risking potential overreach by GoFundMe. That risk would likely be small anyway, because every incentive for GoFundMe is to approve campaigns and host them on its platform. Indeed, that incentive is likely the reason why GoFundMe’s enforcement of even its earlier, more restrictive, terms of service was spotty at best, nonexistent at worst. As a result, in order to protect the public, a less restrictive approach would likely fail as it bumps up against the pro-campaign incentives.
Crowdfunding platforms can serve a useful purpose. However, they can also be weaponized by quacks to exploit desperately ill patients and kind-hearted donors seeking to help people. That is the current situation, with only the recent minor exception based on GoFundMe’s banning of antivaccine campaigns and campaigns for certain quack cancer clinics that have been particularly egregious offenders. The effort to clean up GoFundMe and other crowdfunding campaigns should be viewed as an anti-fraud initiative, because, make no mistake, health fraud is what is being facilitated by these platforms.