People seeking dubious, potentially harmful treatment for cancer and other ailments raised nearly $7 million over two years from crowdfunding sites, a study found.
Echoing recent research on campaigns for stem cell therapies, the findings raise more questions about an increasingly popular way to help pay for costly, and sometimes unproven, medical care.
Soliciting money on GoFundMe and other sites eliminates doctors, hospitals, insurance companies and other “gatekeepers” that can be a barrier to expensive treatment, said lead author Dr. Ford Vox, an ethicist and brain injury expert at Shepherd Center rehabilitation hospital in Atlanta. He calls it “the democratization of economic power through social media” but says it can pose an ethical dilemma.
Online fundraising “has a big bright side” when it helps patients pay for legitimate care, he said. “Communities are really being able to rally around people in rough times. That’s fantastic, but there is this very clear dark side” when treatments sought are worthless or even dangerous.
His study was published Tuesday in the Journal of the American Medical Association.
GoFundMe says campaigns for medical care are increasing and are among the most numerous on its site. They include solicitations for conventional treatment and for unproven alternative therapies.
“We always encourage people to fully research whatever it is they are raising money for and to be absolutely transparent on their GoFundMe page, so donors can make an informed decision on what they’re donating to,” GoFundMe said in an emailed statement.
The researchers examined campaigns posted from November 2015 through mid-December 2017, mostly on GoFundMe. They focused on five treatments sought in about 1,000 campaigns: homeopathy or naturopathy for cancer; hyperbaric oxygen for brain injuries; stem cells for brain or spinal cord injuries; and long-term antibiotics for persistent Lyme disease.
While some patients swear they’ve benefited from some of the treatments, there is no rigorous scientific evidence that any of them work for the conditions involved, the researchers said.
The most numerous were solicitations for homeopathy or naturopathy for cancer — 474 requests seeking more than $12 million. About one-quarter of that was raised.
Homeopathic products typically contain heavily diluted drugs, vitamins or minerals said to promote healing, although some have been found to contain toxic amounts. Naturopathy, another alternative medicine practice, sometimes uses homeopathic products, herbs and dietary supplements or body cleanses.
Michelle Drapeau has raised about $7,000 on GoFundMe for homeopathy and other alternative remedies since being diagnosed with advanced stomach cancer in February 2017. The 45-year-old investment banker from West Palm Beach, Florida, credits them with keeping her alive since she stopped chemotherapy over a year ago.
“I wanted to make sure I explored every and all options,” Drapeau said. “It’s vital for everyone to have that opportunity.”
Dr. Leonard Lichtenfeld, the American Cancer Society’s deputy chief medical officer, said it’s important to consider what may drive some patients to turn to unproven remedies. U.S. health care costs are exorbitant and many patients run out of money trying to pay them.
And despite considerable progress against cancer and other illnesses, conventional treatment can’t cure every patient, he noted.
“We should not be judgmental and come out and say this is terrible,” Lichtenfeld said.
“No one wants to hear, ‘You have cancer,’ and especially no one wants to hear that there’s no treatment available that can help you,” he said. “You begin to understand why people may turn to unproven treatments and you can understand why others reach out to try to support them.”
“What we need to do is to better inform, even better care for our patients and their families, so they don’t feel this is what they need to do.”