Jan 07 2019

Crowdfunding Quackery

A recent study in The Lancet highlights a disturbing trend – cancer patients using crowdfunding sites to pay for worthless and misleading fake cancer treatments, like homeopathy. They found that in June of 2018 there were 220 active GoFundMe campaigns for “alternative” treatments for cancer.

In this study, which focused specifically on homeopathy (which is 100% complete snake oil), 38% were seeking to use homeopathy in addition to conventional treatment, 29% instead of conventional treatment, and 31% after conventional treatment had failed. The authors, Snyder and Caulfield, were appropriately concerned about these trends.

At this point the most common question to ask is, “What’s the harm.” Well, it is extensive and severe – let me elaborate. In 2017 a study looked at cancer patients, their use of alternative treatments, and their survival. They found that overall if you used alternative treatments you were 2.5 times as likely to die during the study. For the most treatable cancers, like breast cancer, the risk of death was almost six times higher. That is a massive increased death rate. This increased risk of death was controlled for how sick the patients were. The most likely contributor to the increased death rate was delay in conventional treatment.

The implications of this study (and others with similar results) cannot be avoided. Conventional therapy is conventional because scientific evidence shows it is the most effective. That’s it. Therefore, anything else is less effective, by definition. In order to avoid this obvious conclusion proponents must spin grand conspiracy theories. Sometimes the alleged “alternatives” are not just less effective – they are completely ineffective, like homeopathy (which is just magic water).

In the new study, 67% of the patients seeking crowdfunding were seeking homeopathy in addition to or instead of conventional treatment. So they fit squarely into the population that the 2017 study shows conveys a higher risk of death. The campaigns were essentially seeking money to fund treatments that were not only worthless but would increase the death rate of the people who use them.

But there is other harm as well. Of course there is financial harm, which should not be underestimated or dismissed as unimportant. People seek crowdfunding because they don’t have the resources themselves. So it is reasonable to conclude they are exhausting their own resources and then trying to supplement it with the crowdfunding. This is a family that is already depleting their savings and other resources to pay for treatment for a serious medical illness. Adding on tens of thousands of dollars (and sometimes hundreds of thousands of dollars) leaves the patient and their family potentially financially devastated on top of having to deal with the illness itself, and potential death of a family member. Financial devastation has a demonstrable negative effect on the health and prospects of those affected.

There is also a significant opportunity cost. The time, effort, and resources spent seeking the worthless alternative treatments cannot be spent doing other things. It is important for patients with a serious and potentially life-threatening illness to take care of themselves generally. They will want to spend time with their families, and take care of their affairs. Even when cancer is terminal, quality of life is hugely important. Anything that distracts from spending what time and resources they have left in the best way is a huge loss.

And don’t think “alternative” treatments are always benign. They often involve invasive and dangerous procedures, like coffee enemas. They can involve a massive commitment of time and resources, such as extreme raw diets and other regimens. They may involve frequent visits to a clinic. And all of this is without any compelling evidence of effectiveness, and often for “magical” treatments with no scientific plausibility.

There is also psychological harm, which is difficult to measure but obvious if you have ever treated or interacted with seriously ill patients. Proponents of fringe treatments are notorious for making bold and unsupported claims. They promise, essentially, miracle cures (even if they may be savvy in how they couch those claims). This creates false hope in the patient and their loved-ones – a false hope that is almost certain to be dashed. I have seen first hand the utter psychological devastation when a patient realizes that the false hope that was sold to them was just that. Talk about rubbing salt in the wound – they have to deal with the time they lost pursuing nonsense, the expense they put on their family and friends, or even the public (with crowdfunding campaigns), and the emotional roller coaster of their dashed hopes. So they feel guilty, foolish, and exploited. Many patients, of course, find it difficult to process all this, so they remain in denial – convinced the fake treatments are somehow working despite all physical evidence. They are going down with the ship, causing maximal damage along the way. Death-bed remorse is not uncommon, when it is too late to limit the damage.

All of this harm, of course, existed before crowdfunding was a thing, but it does make it worse. The campaigns typically showcase the unrealistic miracle cure claims and those selling the fake treatments. Further, they funnel even more money to the charlatans. The fact that fake medicine is a multi-billion dollar industry is a serious problem, because this gives the quacks lots of resources to lobby for friendlier laws, to infiltrate hospitals and academia, to influence politics, and to promote nonsense. The industry builds on itself, and is literally changing medicine by legitimizing fraud and quackery.

The crowdfunding campaigns are just one small part of it, but they contribute to the harm.

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