Medical crowdfunding, a large and rapidly growing practice dominated by the website GoFundMe, can be a lifesaver for people who find themselves unable to access cancer treatments, surgery, or other essential medical services due to gaps in insurance coverage or the failure of public institutions to meet their needs. But it is also helping raise funds for scientifically unproven and potentially dangerous medical treatments that are often packaged as legitimate clinical research and trials. Instead of trying to put a stop to these shady practices, GoFundMe is actually promoting them.
Although crowdfunding is a flawed solution to lack of access to health care, GoFundMe correctly sees the use of its services as a response to real and devastating health system failures, especially in the U.S. Some individuals use this platform to access legitimate medical services. But others use donations to pay for unproven and largely ineffective treatments such as homeopathy and stem cell injections.
Last year, two colleagues and I reported in the Journal of the American Medical Association that we identified more than 400 crowdfunding campaigns (almost 90 percent of them on GoFundMe) seeking donations for stem cell interventions. A different trio of researchers identified more than 1,000 crowdfunding campaigns (98 percent of them on GoFundMe) for five poorly supported or potentially dangerous treatments: homeopathy or naturopathy for cancer, hyperbaric oxygen therapy for brain injury, stem cell therapy for brain or spinal cord injury, and long-term antibiotic therapy for so-called chronic Lyme disease.
Even more disturbing, recent publications in Lancet Oncology and the BMJ show that many cancer patients are enthusiastic users of crowdfunding for quack treatments such as homeopathy and energy healing. This research shows that people seeking crowdfunding are not only often wasting their donors’ money on these treatments, but they are also spreading misinformation about their effectiveness and safety when appealing to donors to fund these treatments. Some people are also using crowdfunding to help them opt out of proven effective treatments and palliative care, leading to preventable deaths and suffering.
GoFundMe is aware of this problem and could take actions to better educate its users about unproven treatments and prohibit the most dangerous and misleading campaigns. Instead it is taking a “buyer beware” position. In a statement, the company suggested that it is “not our place to tell [donors] what decision to make” and that campaigners need 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.”
But this isn’t happening. And we know it isn’t happening.
GoFundMe recently sought to position itself not only as a solution to genuine health system failures, but also as a solution to those that don’t exist. In a recent interview with Kaiser Health News, GoFundMe CEO Rob Solomon said, “A lot of insurance doesn’t cover clinical trials and research and things like that, where people need access to leading-edge potential treatments. We strive to fill these gaps until the institutions that are supposed to handle this handle it properly.”
Increasing funding for research and patient participation in clinical trials is a desirable enterprise, but using crowdfunding to do it is incredibly problematic. “Regular” crowdfunding widens inequities in access to care by giving the greatest benefits to those with strong social networks, media contacts, and tech savvy. Crowdfunding for experimental medicine will replicate these problems for those seeking access to clinical trials.
And just as crowdfunding provides incentives for users to exaggerate the effectiveness and safety of unproven treatments via their campaigns and social media, there is every reason to think that this same problem will exist in crowdfunding for participation in clinical trials and access to experimental treatments.
Moreover, research on crowdfunding for unproven medical treatments has shown that many businesses recognize crowdfunding for the massive revenue stream it is, directing their customers to crowdfund unproven treatments that health systems and insurers — rightly — will not pay for. This will likely happen in the realm of more legitimate experimental medicine and clinical trials as well, especially given the new Right to Try Act signed into law in the U.S. in 2018.
For example, BrainStorm Cell Therapeutics announced in the summer of 2018 that it would make access to its experimental stem cell treatment for ALS available through “right to try.” After public outcry that this company was considering charging customers $300,000 to exercise this right, BrainStorm’s CEO changed course, citing a failure to “identify a practical funding solution” for those unable to afford their product.
It doesn’t take a great deal of imagination to see that companies will embrace Solomon’s vision and see crowdfunding as a “practical funding solution” to making their products available through right to try or by evoking such a right without actually using expanded access programs. While BrainStorm, to its credit, chose not to go down this path, crowdfunding campaigns are currently actively raising money to pay for participation in the company’s clinical trial. Thousands of other crowdfunding campaigns are actively seeking funds for desperately ill recipients to participate in clinical trials, exercise their rights to try, and purchase “experimental” treatments.
I find Solomon’s approach of treating crowdfunding for unproven treatments as a feature of medical crowdfunding rather than a failure of it as deeply problematic. While there are undoubtedly legitimate clinical trials that would benefit from patients who responsibly use crowdfunding to raise money to participate, research I conducted with my colleague Leigh Turner shows that this is the exception rather than the rule.
Crowdfunding creates an opportunity for unscrupulous businesses to sell their products to a wider audience under the guise of experimentation, research, and clinical trials. At the same time, the majority of crowdfunding campaigners misrepresent and exaggerate the effectiveness and safety of the treatments they hope to pursue, spurred on by the need to convince donors that their money will be effective in drastically improving the campaigner’s health.
GoFundMe needs to do better to prevent its platform from being used to raise money for unproven and dangerous medical treatments, mislead donors and other members of the public, and steer people away from proven treatments. Without such campaigns, this money doesn’t get raised, this misinformation isn’t spread, and people aren’t steered away from effective treatments and palliative care. Simply put, these harms don’t happen. By enabling them, GoFundMe is complicit in these harms.
If GoFundMe won’t address this problem on its own, the government should do it for the company. This could take the form of GoFundMe being held responsible for allowing and encouraging individuals to make false claims about medical products. Just as the Federal Trade Commission is increasingly warning stem cell clinics to stop deceptive advertising, and the FDA is warning clinics to stop marketing stem cell therapies without FDA approval, GoFundMe could be held responsible for knowingly allowing its platform to be used to parrot and exaggerate false claims for unproven therapies.
Crowdfunding is undeniably being used to finance and promote businesses selling unproven medical treatments under the guise of experimental medicine and mislead the public about their safety and efficacy. This involves thousands of recipients, tens of thousands of donors, and hundreds of thousands of people on social media. GoFundMe needs to stop being complicit, and even glorying in this problem, and help solve it.
Jeremy Snyder, Ph.D., is a professor in the Faculty of Health Sciences at Simon Fraser University in British Columbia, Canada.
This is not only about Go Fund Me, it is about the refusal to evaluate how any of this kind of hype, pseudo science and deceptive marketing it negatively impacting health. Plenty of companies found that these kinds of tricks, including Fake clinical trials are excellent way to market their products to misinformed, vulnerable and desperate people.
Note that the IDSA criteria for diagnosing Lyme disease requires actually having Lyme disease, as evidenced by a positive blood test. There is a thriving community of so-called “Lyme-literate” doctors who make their money from diagnosing Lyme where it doesn’t exist. They advocate for the ILADS criteria, which require no such positive test. The ILADS criteria allow diagnosing Lyme entirely symptomatically, which would allow diagnosing conditions such as dementia as being Lyme. By far the most common cause of dementia is Alzheimer’s disease, so allowing these people to be diagnosed with Lyme when they don’t have it would open the floodgates for being fleeced by these quack doctors and making insurance pay for it.
The two-tier blood test for Lyme disease results in a high number of false negatives. Please stop spreading misinformation about Lyme disease testing and dismissing those who have been diagnosed clinically, as is appropriate for Lyme disease. The Institute of Medicine removes the IDSA guidelines from the NGC for good reason – they are flawed and result in missed diagnosis. If you don’t want patient going to quack doctors for potentially harmful treatments, you have to be willing to pull your collective heads out of your rear ends and start treating patients instead of labeling them as crazy and drugging then with psych drugs. There are too many sick patients with late stage untreated widely disseminated Lyme disease who are falling through the cracks. The majority are women who’ve been psychopathologized by a sociopathic medical system aiming to squeeze the most profit possible for those at the top, be damned the harm done.
The medical community is on the offensive. They don’t have all the answers but they want to force patients to go through approved channels and restrict access to only approved treatments.
As a chronic Lyme patient misdiagnosed for 17 years until a doctor thought to test me for Lyme (CDC+ Result) when none of their treatments for “fibromyalgia” and “depression” worked, I’m now left with a completely broken body and unwilling to give approved western medicine another shot at breaking me further.
Check out the RICO lawsuit in Texas which a federal judge has just decided sufficient evidence exists of a coordinated effort between IDSA, insurers and certain doctors to restrict treatment from patients who’ve failed to improve on IDSA’s outdated treatment protocols, and has allowed the lawsuit to move forward in federal court.
The cancer industry has been killing patients in the name of “treatment” for decades.
Do you think medical consumers don’t see through these efforts to paint sick patients as crazy and prevent them from accessing alternative treatments through GoFundMe? Protecting your guild while patients suffer and die is the most despicable form of trickery.
Hyperbaric oxygen does work for post tbi symptoms. There are several NCBI articles that have shown this. Stop spreading false information.