The downside of crowd-funding medical treatments for desperate patients

crowdfunding-300x150Although the sky-high cost of providing medical care to sick or injured friends and loved ones might seem good reason to encourage community altruism to the nth degree, new technologies that have made it easy, fast, and convenient to “crowd source” online donations also may be sending well-intentioned gifts to dubious and dangerous types of treatment.

A new  study by researchers in Atlanta and New York shows that campaigns on GoFundMe and other social media platforms, sought to raise tens of millions of dollars, and brought in millions for sketchy health-related applications. Experts found “1,059 campaigns that raised money for five unproven or possibly risky treatments: homeopathy or naturopathy for cancer, hyperbaric oxygen for brain injury, experimental stem cell therapy for brain or spinal cord injuries, and long-term antibiotics for chronic Lyme disease,” reported Stat, an online health and medicine news site.

CNN reported that online solicitations were targeted to allow patients to seek dubious therapies at “clinics” in Germany and Mexico (homeopathic or naturopathic cancer care), New Orleans (hyperbaric oxygen for brain injury), and Panama, Thailand, India, China, and Mexico (“stem cell” treatment).

As Stat emphasized:

The new study highlights how the crowd funding economy allows clinics to promote, and profit from, unproven therapies that could pose risks to patients — and offer false hope.

Dr. Ford Vox, a rehabilitation physician, a professor at Emory University, and an author of the new study, told Stat: “People can be desperate in these situations [and] can be taken advantage of.” And while that’s long been the case, the practice is “on full display on these crowdfunding campaigns.”

Jeremy Snyder, a professor of health sciences at Simon Fraser University in Canada who was an author of a separate, published paper on crowd funding for unproven stem cell-based interventions, told CNN that:

“The public should know that their money may be wasted on ineffective treatments or even used for dangerous interventions that could harm the health of those they are seeking to help. If their aim is to help others, there are a variety of well run, science-based charities that very effectively help those in medical need.”

In my practice, I see not only the harms that patients suffer while seeking medical services, but also their struggles to access and afford safe, efficient, and excellent medical care. They’ve been left vulnerable to hype and scams, it is clear, by insufficient action by regulators — at agencies like the federal Food and Drug Administration and the Federal Trade Commission — against those who peddle stem cell bunk and voodoo practices like homeopathy and naturopathy.

It’s also unacceptable that major illness or injury — catastrophes that lurk around the corner and can strike any of us at any moment — can devastate individuals and families. These disasters afflict even those of us who may be doing fine and have health insurance, leaving us to cope not only with dire health circumstance but also the prospect of staggering medical debt and bankruptcy.

It’s great that friends, colleagues from work, school, and church, and others in our communities will step up, via crowd funding, to try to ease the burdens of the sick and hurt. That doesn’t take the place of real reforms of the health care system that we need to undertake to attack uncontrolled, unacceptable medical costs. The soaring prices and inaccessibility of medical services, and the destructiveness of health costs on Americans and their families is a national shame.

As for the online services that support well-intentioned, mass fund raising, Kevin Lomangino, managing editor of the excellent watchdog platform, has a sound prescription, quoting Leigh Turner, a Ph.D., and an ethicist at the University of Minnesota who has studied stem cell crowd funding:

“[These providers] need to stop claiming that their websites serve only to help people obtain access to needed medical interventions. Instead, they must acknowledge that their platforms often help patients access medical procedures or products that are useless, and in some cases even dangerous. Better screening tools and information guides would put some online guardrails in place and help steer crowd funders and donors toward more evidence-based forms of medical care.”

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