Storytelling relies on choices. I can tell you the story of Clara who died after paying tens of thousands of dollars for a pseudoscientific treatment for her cancer, and cast the quack clinic鈥檚 director as the villain鈥� or I can instead roll her timeline back and frame the story as a desperate mother of three with an incurable cancer reaching out through the press to raise money for an experimental treatment, and never mention that she dies in the end.
The latter framing鈥攐f the distraught and relatable protagonist, of a health care system that lets her down, of a rogue doctor that promises cutting-edge wonders鈥攊s much, much more prevalent in the media than the former. It鈥檚 a 鈥渉uman interest story鈥� and, because of this categorization, the journalist covering the story may not think that it requires a skeptical eye to evaluate the treatment the patient is seeking. Likewise, crowdfunding platforms, which allow anyone with an Internet connection to collect money from strangers, are not at present separating the science-based wheat from its quacktastic chaff. Anyone can put together a public appeal for money to pay for genuine medical expenses鈥� or to go get fleeced by a so-called healer selling hope in a jar.
So how much of money raised online actually goes to directly fund people who do more harm than good?
Follow the pounds
Michael Marshall, project director of the听听(which promotes science and skepticism in the United Kingdom), began his quest to answer this question after reading several slanted articles in the media about desperate cancer patients, the first one, he tells me, being听about a young man with lymphoma. The headline? 鈥淢an with cancer beats 8-month prognosis - despite shunning hospital treatment.鈥� Notice the casting of the man as a rebellious optimist ultimately proven right.
Two weeks later,highlighting the rise in crowdfunding appeals for cancer therapies which was largely positive in its outlook.
Marshall decided to investigate the scope of this issue and spent over a year going through thousands of appeal pages on sites like GoFundMe and JustGiving.
The results have been written up by freelance journalist Melanie Newman and听. The equivalent of CAD 13.5 million has been raised on UK crowdfunding sites since 2012 specifically for alternative cancer treatments. Among those, we can count hundreds of thousands of British pounds intended for the pockets of听who, despite many notices from the FDA and his medical board over his antineoplaston quack treatment, continues to seduce anguished patients with promises of a cure. The top three stated overseas destinations by UK cancer fundraisers were Germany, Mexico, and the USA.
翱苍听, Marshall was quick to point out that these CAD 13.5 million represent the tip of a very large iceberg, which includes additional funds that could not easily be compiled. For example, the BMJ report includes the story of Sally Major, diagnosed with advanced bowel cancer at the age of 32, who spent GBP 350,000 (or roughly CAD 600,000) over the course of a year, drawn in part from a crowdfunding effort on YouCaring, but also by taking out bank loans, putting a new mortgage on her house, and selling her car.
No perfect solution
Marshall is quoted as saying that fundraisers for serious conditions like cancer should be reviewed by their platforms before they are approved, and that appeals containing specific treatments which have been discredited should be outright rejected. While GoFundMe is apparently taking 鈥減roactive steps鈥� in the US to better inform its users, JustGiving鈥檚 answer is quite telling: 鈥淲e don鈥檛 believe we have the expertise to make a judgment on this.鈥�
If users of these crowdfunding platforms learn that certain words, like antineoplastons, are 鈥渜uarantined鈥� and will result in their appeal being denied, they will learn to avoid mentioning the treatment itself. If people are forced to write down the clinic they want to go to, with some (like the Burzynski clinic) being blacklisted, they will learn that trick too. I could easily imagine a scenario in which the clinics themselves help their potential customers navigate the rules and filters of crowdfunding sites to ensure their appeals get publicized.
The very concept of 鈥渋ntegrative medicine鈥� is throwing a further wrench in any potential protective mechanism. The majority of the funds raised in the UK were meant for treatments at Germany鈥檚 Hallwang Private Oncology Clinic, which exemplifies the morass we find ourselves in. The clinic offers many conventional medical treatments, as well as early-stage immunotherapies (which may work, but which are still lacking enough evidence to be approved by the UK鈥檚 health service), topped off with outright pseudomedicine like ozone therapy. What鈥檚 a crowdfunding platform to do when the cow pie and the apple pie are mixed together?
Unreliable narrators and offstage deaths
Over the course of this investigation, Marshall did what the journalists who boost these appeals often fail to do: trawl the obituaries. Of the 206 people who were raising money to go to Hallwang, at least 71 had passed away. That crucial part of the story is often nowhere to be found in the media, enabling a sort of inadvertent Pied Piper. Marshall found that an individual would raise money online, go to an alternative clinic, and die鈥� but a second person would quote the first one鈥檚 appeal in theirs, raise the money, and similarly die, only to be themselves quoted in a third person鈥檚 appeal. With each person鈥檚 death evading detection, a chain of seemingly successful fundraisers ends up prolonging itself indefinitely.
Journalists need to learn that these are not 鈥渉uman interest stories鈥�; they are medical accounts and they require the experienced eyes of a specialized doctor to orient their framing. The 鈥渢oken skeptic鈥� trope of allowing a qualified professional to only say a few words in a story that is overwhelmingly naive is simply not enough.
These tales may appear to be heroic struggles in the face of a careless medical institution. Often (though not always) they are actually stories of vulnerable people being fleeced of their money. The integration of conventional medicine with alternative healing practices, boosted by the shiny novelty of unproven experimental therapies, leads to confusion, and it is in this marshland of mystification that emotions will thrive.
Take-home message:
-People with cancer sometimes ask the public for money on 鈥渃rowdfunding websites鈥� in order to pay for treatments that are unproven or disproven.
-Journalists often only tell one half of these stories, often failing to follow up when the person has died.
-Crowdfunding websites will find it difficult to effectively crack down on these types of appeals
For those who want to delve deeper into 鈥淗ow to tell the difference between proven and quack cancer treatments?鈥�, click here
Whether you are considering donating to a crowdfunding campaign or want to set up one of your own for an experimental treatment, there are a few things to keep in mind in order to separate genuine hope from charlatanry. I reached out to Alice Howarth, Ph.D. in Cancer Cell Biology, who lent her expertise to this cancer treatment crowdfunding investigation.
鈥淪ometimes it can be very difficult to spot the difference between proven and unproven treatments,鈥� she tells me. 鈥淚t is useful to apply skepticism to treatments that use certain buzzwords like 鈥榠ntegrative鈥�, 鈥榟olistic鈥� or 鈥榥atural鈥� in their promotional materials.鈥� She recommends checking out different sources when checking on the legitimacy of a treatment: 鈥淭he UK NHS [National Health Service] website gives detailed explanations of different treatment types and Cancer Research UK does an excellent job of covering different treatment options in a clear way. The National Cancer Institute in the US also offers detailed information on a range of treatment options.鈥�
There are examples of experimental cancer therapies that are not covered by public health care systems, but which may benefit patients. 鈥淲hen proton beam therapy was first approved for use,鈥� Howarth relates, 鈥減atients in the UK didn鈥檛 have access to the high-powered equipment required to administer this treatment. No NHS-funded UK hospital held the equipment at the time so patients who might have benefited from this treatment could only access the therapy in different institutions in different parts of the world. This would be a paid-for service and additionally require extra payment towards travel and accommodation to those areas. Crucially, patients who might benefit for these treatments were supported in making those plans and decisions by their oncologists. Towards the end of this year, however, proton beam therapy will become available in the UK on the NHS.鈥�
It鈥檚 also important to mention that skeptics aren鈥檛 cynically denying the existence of any treatment they didn鈥檛 learn about in school. There are promising new treatments on the horizon, but they do need to prove themselves to us before they can be routinely used. One such therapy that has Howarth鈥檚 interest piqued is CAR-T therapy. 鈥淭his is a treatment which involves harvesting the patient鈥檚 own immune cells and modifying them such that they recognize the patient鈥檚 cancer. When the cells are reintroduced into the patient鈥檚 body, these immune cells are able to target and kill the cancer cells. This treatment is still at very early stages but different forms of the treatment are getting approval both in America and Europe and have early promising results. The treatment is not without its fair share of risky side effects. To date, it is offered to patients with the most severe forms of treatment-resistant cancer, but over the next few years, we will gather more information on its potential usefulness for a wider range of patients.鈥�
Howarth has compiled a list of alternative cancer treatments on the website of the Good Thinking Society, which explains what the state of the evidence is on each one as well as their potential risks. The list can be viewed here:
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