Mary Chris Jaklevic is a reporter-editor at HealthNewsReview.org. She tweets as @mcjaklevic.
Colorado’s Pueblo Chieftan recently informed its readers about a plea to raise money for a local man who was paralyzed in a car wreck.
On a cold and icy Jan. 15, Johnny Grove, 38, was on his way to help a friend gather firewood for art projects. It was typical of his willingness to always help out someone in need.
The story featured a photo of Grove, a “Department of Corrections officer, bodybuilder and car enthusiast,” with his family. There was also this quote from his sister:
“Anyone that knows my brother knows he’s the most active person and amazing dad,” said Jennifer Grove. “He coaches his son Peyton’s soccer team and is a hero to Peyton.”
Readers were given a link to a GoFundMe page and told the money raised “will be used for stem cell spinal cord injections, a procedure that may require travel outside of the country.”
Such news stories highlighting medical crowdfunding campaigns are commonplace these days. But while the coverage tends to focus on the good that these campaigns aim to achieve, recent studies have raised serious concerns about the hazards of medical crowdfunding.
This research points out that crowdfunding is a poor safety net that disproportionately benefits people who already have strong social connections. Moreover, these campaigns require people to give up privacy and help facilitate the spread of unsubstantiated medical claims.
In some cases, providers offering unproven, often dubious, treatments may benefit more from these campaigns than the patients they are supposed to assist.
There’s been little focus on the role journalists might play in exacerbating these problems.
We’ve noticed numerous stories, often by local papers and TV stations, that feature crowdfunding campaigns. While our perusal of the coverage is not comprehensive, it’s hard not to notice that the patients featured are disproportionately attractive, young, and with dramatic stories to tell.
Take a recent Palm Beach Post story alerting readers to a funding campaign to help a 14-year-old girl who was severely burned when a gasoline can exploded near a bonfire.
Or a story in the Santa Fe New Mexican about Lucas Tapia, a 7-year-old with a rare blood disease called aplastic anemia, who just wants to “go back to school.”
Or a story in the suburban Chicago Daily Herald describing an appeal for a retired high school teacher and coach with a malignant brain tumor, whom a colleague described as the “utmost picture of health.”
Sometimes there is a celebrity angle. The Los Angeles Times’ LAFC family closing ranks behind a teammate’s tragedy covers a professional soccer player starting a GoFundMe drive to pay medical bills of his brother’s 29-year-old fiancée, who has brain cancer.
We don’t see many stories about people with more pedestrian chronic diseases who may be struggling with medical debt.
And we often don’t receive much context about why the money is needed. Do these patients and their families lack medical insurance, or are they burdened by high deductibles? And if so, isn’t that an important part of the story?
Lauren Berliner, PhD, an assistant professor in media and communications at the University of Washington, has written that crowdfunding could deepen inequities in the health system, compelling patients and their families to “construct narratives about illness and financial need, and attempt to demonstrate their own deservingness and worth.”
In some cases, she said news coverage might be contributing to health inequities rather than helping to solve them.
“When we see a campaign that’s raised a lot of money, it’s very often that there is some sort of media coverage associated with that,” she said. “I think the most responsible thing that journalists could do is bring attention to the lack of social structure for this person. Maybe if this person had affordable healthcare they wouldn’t be in this situation.”
“I’d be very excited about journalists doing more investigative work in terms of the connections between the kind of (crowdfunding) campaigns in their community and the available safety net in their community,” she added.
In many cases, it’s not clear that the treatment being sought has evidence to support it, or is even safe, but some journalists don’t appear to do any groundwork to find out.
The Sentinel and Enterprise in Fitchburg, Mass., published ‘Princess warrior’ Alaina needs your help, in which a mother suggests that cannabis treatment might cure her 12-year-old daughter’s brain cancer. According to the American Cancer Society, there’s no evidence that cannabis can cure cancer.
“The type of tumor that she has is terminal,” Kendra Salafia said. “But she’s been to two cannabis doctors and one doctor out in California that said if she can get ahead of the cancer with alternative treatment we have scientific proof (she has a chance at recovery). Other people who received it survived. They were able to beat the cancer.”
Alaina has already started the cannabis treatment, which combats the cancer cells and helps with the pain, according to her mother. She is also receiving donations of scorpion venom, a new experimental treatment.
Montana’s Bozeman Daily Chronicle’s Bozeman man with MS seeking non FDA approved treatment in Mexico, reported on a $54,000 stem cell procedure being sought by a 30-year-old father of three. The paper said the procedure has an astonishing “80 percent success rate” of halting multiple sclerosis, but doesn’t say where that information came from.
This isn’t just a U.S. phenomenon.
While media outlets such as Mother Jones and CBC News have portrayed online fundraising as a reflection of a broken U.S. healthcare system, we found numerous news stories in other countries plugging crowdfunding for treatments that aren’t supported by evidence.
Multiple news outlets including People covered the efforts of Kate Winslet and Leonardo DiCaprio to augment fund-raising to help a 28-year-old cancer patient in the UK receive immunotherapy at a “wonder clinic” in Germany called the Hallwang Clinic.
Blogger and surgical oncologist David Gorski, MD, PhD described Hallwang as one of multiple German alternative medicine clinics for cancer that “often charge enormous sums of money for treatments that range from the unproven to the dubious to pure quackery.”
Basically, like any good con, Hallwang asks patients to trust its doctors, to take it on faith that its protocols do what is claimed for them. It does this in order to extract large quantities of money from their wallets, even if it forces them to do things … such as selling their houses and other valuables, taking to the Internet to raise money, and going into deep debt to pay for a combination of seemingly state-of-the-art experimental therapies that haven’t been approved or validated for what they’re being used for plus outrageous quackery. After all, believing that Hallwang is the only place that can save your life is powerful motivation to go out and raise that money.
Then there was the high-profile case of British infant Charlie Gard, whose parents raised nearly $2 million via GoFundMe to pay for an experimental treatment for mitochondrial DNA depletion syndrome.
News coverage reported his mother’s claim that the treatment, called nucleoside bypass therapy, would save his life, even though it hadn’t been tested in a clinical trial.
“If we don’t raise enough money then we won’t be able to go to America for treatment and Charlie will die,” she was reporting saying.
News coverage raises the profile of experimental treatments and could make them seem more legitimate, says researcher Jeremy Snyder, PhD, who published a study exploring ethical problems with medical crowdfunding.
“If there’s a claim you get 92 percent effectiveness, that gets repeated in the local newspaper, it seems more like a fact at that point,” Snyder said.
“I don’t have a problem with journalists reporting on these particular campaigns,” he added. “I think that it would be more responsible of journalists to look a little bit more critically, not only at the efficacy claims that people are making but also, why are people in this situation that they have to essentially go online to beg for money?”
Snyder believes crowdfunding already offers free advertising for unproven treatments. In research that has yet to be published, he’s identified more than 400 crowdfunding campaigns for stem cell treatments at specific U.S. clinics. Collectively, they had more than 100,000 shares on Facebook and Twitter, he said.
Crowdfunding may serve the interests of institutions and firms that hawk expensive and unproven treatments. Some even urge patients to start their own campaigns.
Establishing an online crowdfunding campaign and reaching out to local media are among the pieces of advice contained in a patient guide published by a stem cell clinic at Northwestern University Medical Center. The guide’s existence was reported by stem cell researcher Paul Knoepfler on his blog.
The guide advises patients to “build a team” of family members and friends to get the word out and encourage media outlets to “do a special feature or human interest story for the cause.”
A San Diego-based company, Stemgenex, encouraged patients who couldn’t afford to pay for its unapproved stem cell treatments to set up crowdfunding pages, according to a lawsuit reported by San Diego TV station KPBS. The suit alleged the company’s treatments were ineffective and misleadingly marketed.
Some news organizations have done a good job of flagging bogus and potentially hazardous treatments. For example, the Boston Globe published a cautionary tale about a stroke patient who spent at least $150,000 on stem cell therapies that left him with a tumor that triggered paralysis in one leg, and the BBC covered a family that “wasted thousands of pounds” on alternative treatments for a 46-year-old woman who eventually died of cancer.
The media have long publicized philanthropic causes, but crowdfunding may create extra pressure on journalists to give the spotlight to personal appeals.
For example, YouCaring advises users to “show you are active in the community,” “be positive,” and “show you are working hard to overcome your obstacle. Perhaps you are an unsung hero or an underdog who inspires the community.”
More unease about media promotion of crowdfunding was created when the San Diego Union-Tribune partnered with GoFundMe to enable readers to start campaigns linked to stories on its pages. That partnership was the subject of a thoughtful critique in The Verge.
For Snyder, such arrangements heighten concern that the media might be co-opted into the crowdfunding industry. He called the Union-Tribune partnership “kind of appalling” because it could discourage critical reporting about societal factors that lead to crowdfunding.
“Instead of pitching this as a feel good story about helping out a community member, a reporter should ask, Why is this person having to go online to get a hearing aid? That seems less likely to happen if they have a partnership,” he said.