COMMENTARY

Patients 'Crowdfunding' for Dubious Cures: What's Your Role?

Arthur L. Caplan, PhD

Disclosures

February 19, 2019

I'm Art Caplan. I'm at the Division of Medical Ethics at New York University School of Medicine.

Recently two colleagues joined me in conducting a study. We wanted to figure out what patients who were desperate to crowdsource—or crowdfund—access to dubious cures were doing.

A lot of money goes into crowdsourcing on the Internet. It's important that doctors ask patients if they are considering alternative medicine, particularly those who are facing dread disease, terminal illness, or impending serious disability. You need to know that.

We picked five "cures" that either don't have much medical evidence in favor of using them or are known to not work, such as homeopathy for cancer or stem cells to treat spinal cord injury. Some of these treatments may show promise down the road, but no clinical trials have shown that they work.

We looked at the main [crowdfunding] sites on the Internet, such as GoFundMe, and found millions and millions and millions of dollars being raised by patients to help them get to clinics—some in the United States and some outside of the United States—that are offering these kinds of cures. It isn't clear who is counseling these people, to say that it's not a good idea to spend all of your money, or anyone else's money, to try to get to some unlicensed, crazy clinic on some island. That isn't the way to deal with the reality that you may have a terminal illness. Better to prepare differently. You don't want to suffer unnecessarily and you don't want financial toxicity on top of physical challenges and problems.

Another thing we learned is that people don't say what they're going to do with the money if they don't get enough. Do they return it? Do they keep it? Do they pass it to their children? Do they spend it on luxury goods? Or what happens if they raise too much money? The hosts of the [crowdfunding] sites for medical and healthcare don't have any restrictions or regulations at all.

They do charge money for people to post a campaign but they don't require you to say what the money is for, or whether it's a proven medical treatment or something that's an absolute long shot, way outside the medical mainstream. They don't ask you to say what you're going to do with the money if you don't get enough to do what you say you need to do, or if you raise far more than what you say you need. Where is it all going?

The Internet can be a place that's very good for helping a lot of people with charity, and it can be a place to exhibit altruism, whether to victims of the California fires or victims of mass shootings and on and on; a lot of good can come out of these campaigns. But in the health arena, there's a lot to worry about and a lot to suspect. Physicians need to be aware of what's happening on the Internet, and if you have a patient with terminal cancer, or a patient who's facing impending blindness or some other serious disability, ask the patient, "Are you thinking about medical crowdsourcing? Are you thinking about trying to explore nontraditional options?"

Desperate patients need good advice. I hope physicians will be willing to give it to them. I'm Art Caplan from the Division of Medical Ethics at NYU. Thanks for watching.

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