Crowdfunding raises millions for risky medical treatments, study says

Certain medical fundraising efforts could do more harm than good for some patients.That's according t...

Posted: Oct 23, 2018 3:15 PM
Updated: Oct 23, 2018 3:15 PM

Certain medical fundraising efforts could do more harm than good for some patients.

That's according to a new research letter published in the medical journal JAMA on Tuesday. The paper found that more than 1,000 online medical crowdfunding campaigns have raised nearly $6.8 million intended for several treatments that are either potentially dangerous or yet to be scientifically supported as effective.

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The paper specifically tracked funding for five treatments: homeopathy or naturopathy for cancer; hyperbaric oxygen therapy, known as HBOT, for brain injury; stem cell therapy for brain injury and spinal cord injury; and long-term antibiotic therapy for chronic Lyme disease.

"We were surprised by the amount of money. It was considerable," said Arthur Caplan, a professor and founding head of the division of bioethics at NYU Langone Health in New York, who was a co-author of the paper.

"Sadly, I think part of the reason we see so much money here is that people do want to help, but we're operating in a kind of culture where people aren't listening to what the experts are telling them," he said. "It's one of those sad effects, I think, of anti-science."

Medical crowdfunding has become commonplace in recent years, especially with the cost of medical care in the United States rapidly rising, according to GoFundMe, the largest crowdfunding platform used for medical purposes.

Health care spending in the US increased by about $933.5 billion between 1996 and 2013, according to a separate analysis previously published in the medical journal JAMA last year.

Some crowdfunding platforms aim to offset those costs. For instance, GoFundMe hosts more than 250,000 medical campaigns per year, according to its website. Many medical campaigns on crowdfunding platforms are established for an individual medical need -- such as a family seeking help paying for cancer treatment, or a person who wants to try a therapy for a rare illness.

"GoFundMe campaigns are set up by individuals, for a specific need, whether it's for a charitable or personal cause. Each campaign is unique to their own situation and therefore, we are unable to comment on specifics related to the campaigns without knowing the exact ones this paper is referencing," said a statement from GoFundMe emailed to CNN in response to the new JAMA paper.

"We have a set of terms and conditions and will remove any campaign that violates our terms of service. Our Trust & Safety team is working around the clock to ensure the safety and protection of our community and protects all donors with the GoFundMe Guarantee," the statement said. "The industry's first and only refund policy, GoFundMe Guarantee, ensures the funds raised by GoFundMe campaigns go the intended recipient. If misuse is detected, we'll refund donors."

Tracking five treatments, and which raised the most

For the new paper, researchers searched for medical crowdfunding campaigns across four sites -- GoFundMe, YouCaring, CrowdRise, and FundRazr -- and they specifically looked for campaigns related to the five treatments.

The researchers identified campaigns related to the treatments that had been posted in the US and Canada between November 2015 and the time of their analysis, which was conducted last year between November 14 and December 11. All of the campaigns were seeking therapy.

The researchers identified 1,059 campaigns that mentioned an intention to direct funds to one of the five treatments they searched for. No such campaigns were found on CrowdRise or FundRazer, but 1,038 were found on GoFundMe and the rest on YouCaring, which was acquired by GoFundMe this year.

The campaigns in total sought to raise $27,249,487.99 and they ended up raising a total of $6,779,700.01 -- or 24.9% of what was sought -- by the end of the data collection, the researchers found. The paper and researchers did not disclose any specific information about individual campaigners, such as their names, where they lived, or other details.

Among those campaigns, the most money was raised by the 474 campaigns collecting funds for homeopathic or naturopathic cancer treatments, at more than $3 million, the researchers found.

The researchers also found that stem cell therapies for brain and spinal cord injury generated 188 and 93 campaigns, respectively, raising more than $1 million for brain injuries and $590,446 for spinal cord injuries.

The 190 campaigns seeking funds to access HBOT for brain injury raised $785,421.92 and the 114 campaigns seeking funds for long-term antibiotic therapy for chronic Lyme disease raised $689,363.67, the researchers found.

The researchers also identified nine named practitioners and eight countries that campaigners intended to visit for the therapies and treatments. Those included clinics in Germany and Mexico for homeopathic or naturopathic cancer treatments, a clinic in New Orleans offering HBOT for brain injury, and various clinics in the US, Panama, Thailand, India, China and Mexico for stem cell therapies.

The study has some limitations, including that only five treatments were examined across four platforms -- more research is needed to determine whether similar findings would emerge for other treatments across other platforms.

"There are bigger searches that could be done," Caplan said.

Additionally, despite each campaign's intent, the data in the paper did not reveal whether campaigners actually used the funds for the specified treatments, nor what happened if the campaign raised more funds than sought.

Overall, Caplan said that crowdfunding platforms could improve on requiring users who are seeking crowdfunding for medical treatments to post more information about themselves and the use of funds raised, such as what the plan is if the funds cannot be used and what the treatment outcome is after the funds are used.

"I think it would be useful to have a crowdfunding requirement that says if you crowdsource here, we're going to tell you the outcome of what happened -- that you should fill that in at the end, that you have a responsibility. People gave you money to tell them what happened," Caplan said.

GoFundMe said in its company statement, "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."

'Their money may be wasted'

Crowdfunding campaigns specifically for unproven stem cell-based interventions tend to underemphasize the risks and exaggerate the efficacy of such therapies, suggests a separate paper previously published in the medical journal JAMA in March.

That paper identified 408 campaigns on GoFundMe and YouCaring last year that received more than $1.4 million in pledges intended for unproven stem cell-based interventions.

"There's a woman, Doris Tyler, for example, you can still find her crowdfunding site online where she was seeking stem cell treatment for vision loss," said Leigh Turner, an associate professor at the University of Minnesota Center for Bioethics, School of Public Health, and College of Pharmacy, who was an author of that previously published paper.

"She ended up having a crowdfunding campaign, went to a clinic in Georgia, and then ended up being blinded by the so-called stem cell procedure there," he said. Earlier this year, the woman's story was published in The Washington Post, The New York Times, and other media outlets.

Last year, the GoFundMe team published a blog post offering some guidance specific to fundraising for stem cell therapy, which also included possible risks, side effects, and limitations of stem cell therapy.

Now the latest JAMA paper "provides a little bit more insight into the variety of campaigns that are out there," said Turner, who was not involved in the new paper.

He added that he wished the researchers "had better explained why they focused on the five categories they analyzed rather than crowdfunding campaigns for unproven interventions intended to treat dozens of other conditions, but otherwise it's an interesting piece and a meaningful addition to the growing body of scholarship on health-related crowdfunding."

Yet Turner warned against criticizing patients who may use crowdfunding out of a desperate need for medical care.

"I think about the US as a country where many people don't have adequate access to health care. They don't have sufficient health insurance, and so in a way there are these massive structural problems in terms of accessing health care -- and crowdfunding sites become this vehicle that some people use to try to get medically necessary care," he said. "We can object to the injustices of the US health care system but that doesn't mean we want to condemn individual campaigns for people that are basically looking for interventions that might help them."

"Previous research has shown that crowdfunding is being used for unproven stem cell interventions and alternative cancer interventions. This paper builds on that research by confirming the existence these areas of concern and also demonstrating that this problematic fundraising is going on for HBOT for brain injury and antibiotic treatment for Lyme disease," said Jeremy Snyder, a professor of health sciences at Simon Fraser University in Canada, who was not involved in the paper but was one of the authors of the separate paper on crowdfunding for unproven stem cell-based interventions.

"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," he said. "Crowdfunding platforms should also be wary of letting themselves be used for these purposes."

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