Crowd-funding of healthcare often preys on false hope

Opinion: The rise of crowd-funding has opened lucrative revenue streams for dubious clinics

For every condition imaginable, there is no shortage of operators offering empty promises at shocking prices. Photograph: iStock

For every condition imaginable, there is no shortage of operators offering empty promises at shocking prices. Photograph: iStock

 

Compassion is a defining human trait, and the emergence of crowd-funding has allowed us to collectively ease the plights of others. But when it comes to healthcare, our innate generosity is too often abused by charlatans and fools.

For every condition imaginable, there is no shortage of operators offering empty promises at shocking prices.

Worldwide, a plethora of clinics offer scientific-sounding therapies to treat all manner of malady, from stem-cells to hyperthermia to ultraviolet blood irradiation. Luring patients in with slick websites and hyperbolic testimonials, their lofty promises and assured presentation is understandably appealing. But any semblance of science is illusory, given that the offered interventions either have not undergone requisite clinical trials, or have been deemed to lack efficacy.

Stem-cell therapy, for example, is a hugely promising research area, but one very much in its infancy. Even so, illicit centres the world over offer it as ‘regenerative’ medicine, often located in regions with lax regulation such as Mexico and Thailand. One report found 570 clinical outfits offering such treatments in America alone. ‘Stem cell tourism’ has killed patients, and induced alarming side-effects – most notably, perhaps, cases of bone growing in patients’ eyes, rendering them blind.

Rather depressingly, there is no shortage of qualified doctors lending ostensible authority to such undertakings, ranging from the merely useless to insanely dangerous.

Cancer is an emotive and ubiquitous illness, and unsurprisingly the focus of many suspect organisations. In Europe, Germany is undoubtedly the bastion of questionable cancer treatments. Outside of its tightly regulated public hospitals, there has been a proliferation of private centres offering experimental or unapproved drugs and modalities alongside conventional treatment. Here, patients are given cocktails of untested drugs, therapies, and ‘alternative’ modalities such as IV vitamin injections.

Testimonials

Many pitch exclusively at the world market, with multi-lingual testimonials promising regression and cures. These clinics prey on desperation, usually patients whose illness is terminal, with no viable treatment options left. Costings typically exceed six figures, so to fund such undertakings, patients turn to crowd-funding, emptying savings accounts or even selling their homes.

But despite the astronomical price-tag, the cruel reality is that these interventions do not tend to prolong lives, nor do they provoke cancer remission. Instead, patients spend their last days and money at these centres to no obvious benefit. For all their superficial humanity, these clinics are not charities, and their charges are extraordinary and extortionate.

When patients die, their loved ones are left with not only heartbreak but terrible financial strain. To add insult to injury, customer testimonials often remain in clinic advertising long after the patient has expired, perpetuating the clinic’s reputation.

The situation across the Atlantic is sadly no different, with numerous outfits targeting patients. Perhaps the most infamous of these is the Burzynski clinic in Texas, which claims miracle results for cancer at costs upwards of $10,000 per month. Despite FDA condemnation and patient warnings from the American Cancer Institute, crowd-funding appeals to send patients to the clinic are common in Ireland, Europe and the US. Burzynski maintains that their treatments work and benefit people.

While cancer is a very real disease, the mere fact a condition isn’t medically recognised is no impediment to profiteers. Dubious clinics make a healthy profit ‘treating’ these conditions with inappropriate medical interventions, from hydrogen-peroxide infusions to long-term IV antibiotic regimes.

These are frequently eye-wateringly expensive; a widely promoted Irish appeal raised almost €150,000 to send a patient to a highly suspect American clinic for ‘life-saving’ treatment. Quite aside from financial exploitation, there is an added cruelty in so much as these patients are denied the effective help they require, instead becoming dependent on devious charlatans.

False hope and exploitation

This cynical commodification of false hope and exploitation of vulnerable people is nothing new – snake-oil has long been a thriving business. Such was the extent of cancer quackery in the early 20th century that the UK government introduced the Cancer Act in 1939 to crack down on the practice. But the rise of crowd-funding platforms has opened a more lucrative revenue stream for those offering such services.

For patients with terminal prognosis and their loved ones, the whispered promise of medical miracles is understandably alluring. The emotive aspect overwhelms healthy scepticism, even in the face of incontrovertible medical and scientific evidence. As humans, we are disproportionally swayed by anecdote – a fact that has not gone unnoticed by crank clinics, who push testimonials in lieu of evidence.

In this regard, they are often aided and abetted by an uncritical media – the notorious Burzynski has been the subject of flattering documentaries, with Variety commenting that the director was . . . “either unusually credulous, or doesn’t understand the difference between a documentary and an advertisement”.

Newspapers and media outlets are every bit as confused, frequently running feel-good stories about fundraising appeals for sick people, devoid of any critical probing as to where the money will go. A quick search of any online fundraising platform yields a multitude of appeals to send ill people to receive ground-breaking treatments, including several from Ireland. But as a rule, experimental drugs should only be given to patients on registered clinical trials, and patients should never be charged for them, let alone charged hundreds of thousands.

Perhaps the most cynical move of all is how these outfits present themselves as saviours to the vulnerable.

Insulation from criticism

Positioning themselves as a patient’s only hope inures them from criticism, fostering a siege-mentality when anyone asking questions or expressing doubt becomes a target for contempt and opprobrium. And perversely, this insulation from criticism creates the very environment where exploitation thrives and patients suffers. Breast cancer survivor and patient-advocate Eileen O’Sullivan has long catalogued the charlatanism aimed at sufferers, stating that “. . . as a cancer patient, don’t believe there are moral lines that people will not cross to exploit you, by preying on your fear and vulnerability. These people are slick, polished marketeers offering false promises while interfering in the trust relationship between you and your clinical team. Make no mistake, you are a commercial target”

Our compulsion to assist those suffering makes us human, but the sobering reality is that there are always vipers seeking to prey on compassion. When confronted with drives to fund miracle cures, we must be exceptionally wary and ask questions.

Otherwise, we risk enriching cranks at the expense of patients.

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