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Crowdfunding Drives Funds And Attention Toward Questionable Medical Treatments

Photo caption: Crowdfunding Drives Funds And Attention Toward Questionable Medical Treatments

Photo by Sara Wong for NPR

Crowdfunding Drives Funds And Attention Toward Questionable Medical Treatments

For deep water divers who decompress too quickly, doctors may advise they lie inside a pressurized glass tube and inhale pure oxygen to treat painful symptoms known as "the bends." The oxygen boost is thought to reduce swelling and prevent infection.

The treatment, known as hyperbaric oxygen therapy or HBOT, is approved for a few other conditions, like carbon monoxide poisoning and a form of gangrene. But some clinics around the country offer it for numerous other health problems, including migraine headaches, depression, strokes, and even brain injuries. And HBOT hasn't been proven to work for most of these, according to the FDA.

That hasn't stopped many people from fundraising for the treatment — and many other unproven or alternative treatments — on crowdfunding platforms like GoFundMe and YouCaring (GoFundMe bought YouCaring in April 2018).

In two studies published recently, researchers ran systematic searches through crowdfunding sites to see just how pervasive this issue is. They identified thousands of campaigns raising millions of dollars for medical treatments that are not backed by science.

"It's wasteful both for the patient and the donor, and potentially dangerous," says Dr. Ford Vox, a brain injury specialist in Atlanta and the author of one of the studies.

Crowdfunding for medical bills, treatments and related expenses has become common, often filling in the gaps when people don't have insurance or their insurance doesn't cover all their expenses. In 2017, one third of the money raised on GoFundMe globally was directed toward self-categorized medical campaigns, according to the company. The platform hosts about a quarter million medical campaigns each year that raise over $650 million.

But some portion of those funds are for treatments of questionable value. Vox's study, published in JAMA in October 2018, looked at five alternative treatments to serious medical issues: Homeopathic treatments for cancer, hyperbaric oxygen treatments for brain injuries, stem cell treatments for brain and spinal cord injuries, and long-term antibiotic treatments for chronic Lyme disease. And Vox says they could potentially lead to harm, either from side effects of the treatment or from the lost opportunity to receive treatments known to be effective.

Vox and a team of researchers identified over a thousand active campaigns for the five treatments posted from 2015 to 2017. The campaigns asked for over $27 million and had raised nearly $7 million. Because it only looked at the five treatments during a narrow time frame, Vox says this research is merely a snapshot of what could be a much larger issue.

"The biggest issue I'm concerned about is potentially feeding this whole dubious area of medicine, quote unquote, that has always existed," Vox says. He says that as the crowdfunding market expands, and the sheer dollar amount raised by campaigns increases, "so does the money going to this alternative medicine marketplace."

Another study published in JAMA in May 2018 focused specifically on stem cell treatments. The authors searched crowdfunding platforms for people seeking treatment at more than 300 direct-to-consumer stem cell clinics, and found 100 campaigns seeking $7 million total.

"It doesn't take much time rummaging around crowdfunding sites to realize that there are a lot of campaigns for people seeking stem cell therapies," says Leigh Turner, a bioethicist at the University of Minnesota's Center for Bioethics, and one of the study's authors.

Stem cell therapies use stem cells in injections or tissue transplants to try to treat or prevent diseases. The FDA has approved stem cell treatments that use cells from cord blood to treat a limited group of disorders affecting the body system that produces blood. It warns most other types of stem cell therapy are unproven, and can be unsafe.

'A shining moment'

Michelle and John Witkowski had reached a point of desperation when their niece started a GoFundMe fundraiser so Michelle could get a stem cell treatment for her multiple sclerosis.

"It was a shining moment," John says, when they learned about StemGenex, one of the direct-to-consumer stem cell treatment facilities Turner identified in his paper. A friend's wife who had the same particularly aggressive form of MS had gotten stem cell treatment there and said she regained feeling in her left arm, which she hadn't been able to use for a while. The Witkowskis just had to figure out how they were going to pay for the nearly $15,000 treatment.

John says they were not the asking type of people. That is, even after liquidating their 401(k) plans and spending roughly a half a million dollars on treatments throughout Michelle's 10-year battle with MS, they were hesitant to ask people for money.

Yet they felt they had to try. "The idea of something that may be able to help gives me hope, something I haven't had in a long time," Michelle explained on her GoFundMe campaign page.

That hope may have been misplaced. Dr. Rhonda Voskuhl, the director of UCLA's Multiple Sclerosis Program, says that while there is legitimate research on stem cell therapies for MS and other illnesses, there are no definitive results yet.

"There are people at well-vetted institutions doing this work, and when it is safe, it will be approved," she says. "I don't think it's a good idea to do things that are not FDA-approved."

Turner understands why people fundraise for alternative treatments when they're in desperate situations. But he thinks both the clinics that offer these treatments and the crowdfunding sites bear responsibility for promoting unproven treatments — and false hopes.

Right now, Turner says, clinics can basically advertise how they please, which allows them to market to vulnerable individuals.

"Should you be allowed to just kind of put up a website and claim that you have a stem cell treatment, you know, and then start charging people thousands or tens of thousands of dollars?" he asks.

In their GoFundMe campaign, the Witkowskis asked for $20,000 for Michelle's treatment and the accompanying expenses. While their fundraiser only shows they made $2,500, John says they raised much more than that. Friends and family members donated directly to them or wrote checks to the treatment center, StemGenex. And when a hat was passed around at John's office, he remembers he collected a couple thousand dollars.

But after the stem cell therapy, Michelle didn't seem to get any better.

"Nothing helped. There were no victories. It's such a bummer," John says. Michelle died just a few months later.

In late October the FDA issued a warning letter against StemGenex, the clinic where Michelle Witkowski got her procedure. The letter says that the agency considers StemGenex's product to be a drug, and that the company's manufacturing and quality control procedures are not in compliance with federal regulations regarding drug manufacturing. It also warns that their marketing violates federal law.

In addition, a pending lawsuit alleges the company's marketing practices are deceptive. StemGenex denies the allegations.

StemGenex did not reply to numerous requests for comment on this story.

Turner and Vox both say that because crowdfunding sites are involved in a transaction that directs funds to unscientific treatments, they should be involved in mitigating the issue, by educating people about the risk of unproven treatments or by putting systems in place to identify problematic campaigns.

"As an organization, GoFundMe needs to think much more carefully and critically about the extent to which they're creating a website that can lead to the spread of misinformation, and what they can do to promote health literacy," Turner says.

GoFundMe uses algorithms to detect campaigns that violate its terms of service, including ones that raise funds for "illegal drugs, narcotics, steroids, controlled substances, pharmaceuticals or other products that make health claims that have not been approved or verified by the applicable local and/or national regulatory body."

But Turner says he thinks they aren't applying these standards rigorously enough. He wonders if GoFundMe will alert crowdfunders trying to raise money for treatments at StemGenex about the FDA's warning letter.

GoFundMe addressed Turner's comment in an emailed statement to NPR: "With these new concerns being raised surrounding certain stem cell clinics, we are taking a thoughtful approach to addressing stem cell campaigns while continuing to provide a safe and secure place for people to fundraise for their needs and causes."

'This is my body'

Zubin Master, an associate consultant at Mayo Clinic's Biomedical Ethics Research Program, questions the extent to which crowdfunding sites bear responsibility to monitor medical campaigns like Witkowski's. "They're not in the business of scientific oversight," he says.

And according to Master, FDA approval alone may not be enough to go on when determining whether people should be allowed to fundraise for a particular treatment on the platform.

Master says there is a grey area in what is considered a legitimate treatment. Physicians are allowed to innovate, to try off-label uses of medications for instance, and the FDA does not scrutinize each step of the care they provide, he says. In fact, if certain regulatory requirements are met, the FDA permits patients with life-threatening conditions to access non-FDA-approved treatments with physician oversight under the Expanded Access program. Master says direct-to-consumer stem cell clinics do not typically meet the requirements for this program.

Overall, Master says, some unproven treatments may be more legitimate than others (for instance, they may be the subject of rigorous research). So, for crowdfunding companies, trying to judge among a spectrum of treatments, is "like drawing a line in the sand."

With 50 million users, Master wonders how GoFundMe would logistically weed out campaigns for non-scientific treatments on a case-by-case basis. "I'm not sure where you would draw the line," Master says.

The e-mailed statement from GoFundMe said they have policies, tools, and experts to "ensure the safety and protection of our community."

The statement went on to say: "Our role is to provide people with social fundraising tools to raise money for their cause or need. While we hope to be a helpful resource for personal fundraising, we believe it is not our place to tell them what decision to make."

Pete Canfield ran a GoFundMe campaign seeking stem cell treatment for his chronic obstructive pulmonary disease in 2016. Doctors had told him the disease, which had reduced his breathing capacity, was terminal. He says he made the decision to try the stem cell treatment with his "eyes open, understanding that it was not a verified procedure."

He says he feels it was his right to try an experimental treatment. "This is my body and I get to make the choices about what I'm going to do with this body, for the most part," says Canfield.

Canfield sought $10,000 to pay for a $6,000 stem cell therapy at another one of the direct-to-consumer clinics Turner identified in his paper. Additional funds were for his travel to the clinic.

He didn't have much luck, just raising over $1,000, but he paid for the rest out of pocket. In the end, the stem cell therapy did not work for Canfield. Still, he says he doesn't regret trying.

"Going to experimental procedures is quite often an act of desperation," he explains. "It's what we see as the only option: 'I have to do this because if I don't do this, there's a good chance I'm going to die.' "

Rachel D. Cohen is a freelance journalist and a former intern on NPR's Science desk.

Copyright 2019 NPR. To see more, visit https://www.npr.org.

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