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Dubious Care And Big Bucks By GoFundMe: Study

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.

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cancer, cellphone, U.S.
A radiologist examines the brain X-rays of a patient. In a small study, patients with brain tumors were given genetically modified poliovirus, which helped their bodies attack the cancer. VOA

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.

Breast Cancer
This undated fluorescence-colored microscope image made available by the National Institutes of Health in September 2016 shows a culture of human breast cancer cells. For the first time, one of the new immunotherapy drugs has shown promise against breast cancer in a large study that combined it with chemotherapy to treat an aggressive form of the disease. VOA

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.

 

Cancers
Women receive cancer treatment at The National Oncology Center in Sanaa, Yemen. VOA

 

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.

Cancer patient
Cancer patient, flickr

“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.

Also Read: Nature Gives You A Major Boost In Improving Your Mental Health

“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.” (VOA)

Next Story

Guinea Worm Diseases Moves Towards Total Eradication

While Guinea worm disease may be on the brink of eradication in people, the Carter Center said there were still thousands of cases in animals in several African nations.

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Guinea Worm Disease
A child watches while a nurse with the Carter Center bandages blisters on her leg from where a Guinea worm is emerging, in Abuyong, Sudan, Nov. 4, 2010. VOA

There were just 28 reported human cases of Guinea worm disease (GWD) last year, the U.S.-based Carter Center said Thursday.

The nongovernmental organization founded by former President Jimmy Carter said the disease is gradually moving toward eradication.

The Carter Center says there were about 3.5 million human cases of GWD in Africa and Asia every year before it took the lead of the Guinea Worm Eradication Program in 1986.

“These aren’t just numbers, these are people,” program director Adam Weiss said. “This is why tens of thousands of volunteers, technical advisers, and staff are working in thousands of villages to find and contain the last cases of this miserable disease and show people how to wipe it out once and for all.”

Guinea Worm Disease
A woman points to her toe from where, she said, three worms emerged in 2009 when she was infected with Guinea worm in her town of Terekeka, South Sudan, Oct. 4, 2017. VOA

People and animals get Guinea worm disease from drinking water contaminated with tiny crustaceans that carry the worm larvae. The larvae mate inside the victim and after the male dies, the female emerges from a blister on the skin and can only be gradually pulled out.

Guinea worm disease is rarely fatal. But the Carter Center said it can incapacitate victims for months — something that villagers who work, farm or go to school cannot afford.

Also Read: Pakistan Starts A Nationwide Polio Eradication Drive

There is no vaccine against GWD and no medicine to treat it.

But the disease can be easily prevented by teaching communities how to filter drinking water and keeping Guinea worm patients and animals away from water sources.

While Guinea worm disease may be on the brink of eradication in people, the Carter Center said there were still thousands of cases in animals in several African nations, where violence and insecurity are making effective prevention difficult. (VOA)