Crowdfunding for Experimental Care - A New Hope or Risky Business?
Study shows disadvantages of fundraising for unproven treatments.
You’ve likely seen them shared on social media or even donated to one yourself – crowdfunding campaigns. These are fundraisers individuals can set up to take donations directly through a page on various websites. GoFundMe and CrowdRise are some popular platforms.
Many people crowdfund to help defray the costs of medical bills and equipment that are not covered by insurance. Ford Vox, M.D., medical director of Shepherd Center’s Disorders of Consciousness Program and chair of the hospital’s ethics committee, points out that such medical crowdfunding has become a common practice among Shepherd Center patients, and he’s seen it do a lot of good. But there are potential risks involved.
“When people fundraise for treatments touted as clinical trials, or other experimental or low-evidence treatments, that’s concerning,” Dr. Vox says.
Vox designed a study to estimate how often this type of crowdfunding is occurring in the United States and Canada, and collaborated with New York University School of Medicine to complete the extensive work involved. The results of their study were published as a research letter in the Journal of the American Medical Association (JAMA) on Oct. 23. They also wrote a commentary about the work for the healthcare policy blog Health Affairs. Here are some highlights of that work:
What Is the Study About?
The researchers wanted to take a look the phenomenon of people raising money for “scientifically unsupported, ineffective or potentially dangerous treatments.”
They focused on campaigns raising money for homeopathy or naturopathy for cancer; stem cell therapy for brain injury; stem cells for spinal cord injury; and long-term antibiotic therapy for “chronic Lyme disease.”
Homeopathic treatments for cancer are ineffective, according to the researchers and results reported in scientific literature. And, stem cell therapy for central nervous system injury and long-term antibiotic therapy for chronic Lyme disease can result in serious side effects, including death.
While important research is happening in the field of stem cells – including work at Shepherd Center that hopefully will make its way into clinical care if proven safe and effective – Dr. Vox points out it’s a red flag when someone needs to raise money online to participate in such “trials.” Well-designed research studies don’t require their subjects to pay for participation. Such fundraisers actually go to support experimental care that isn’t FDA-approved.
Why Do This Study?
Many millions of dollars are raised on these platforms for medical causes each year. There is concern that patients might be devoting time, as well as their and other people’s money to fund treatments that are not effective and could be harmful, Dr. Vox says. Because crowdfunding is a new, unregulated funding source, disreputable clinics or providers may now be able to fund their operations.
“It has now become a widespread phenomenon with clinics targeting people with a wide range of conditions from cancer to those recovering from strokes, spinal cord and traumatic brain injury,” Dr. Vox says.
Even with the best of intentions, patients can unwittingly raise funds for treatments that are unproven – or even worse, harmful.
How Did They Study It?
From mid-November to mid-December 2017, researchers searched five crowdfunding platforms that allow medical fundraising, retrieving all the campaigns they could find for the prior two-year period in the United States and Canada.
What Did They Find?
Of the campaigns they identified, 1,059 of them mentioned the intent to direct funds to one of the five aforementioned treatments, seeking a total of more than $27 million.
The Bottom Line:
“Legitimate medical trials do not charge money,” Dr. Vox says. “You do not have to pay for and raise money for a proper clinical trial where you may or may not receive the experimental treatment. They are claiming it is a trial to add a layer of legitimacy to it, while in reality, it is fake. It’s sad to see.”
While there may be potential for stem cells to help in the treatment of spinal cord injury or traumatic brain injury in the future, there are currently no stem cell treatments approved by the FDA for these types of injuries. Not only are these not approved, they also could possibly be dangerous or cause adverse effects.
- Be wary of any “clinical trial” that requires you to pay to participate.
- Check to see if a trial is affiliated with an established research university. You want that.
- If it sounds too good to be true, it probably is. Always talk with your physician about trials or treatments you’d like to consider. Get a second or third opinion.
- Brain Injury Association of America
- American Spinal Injury Association
- Other Professional Societies
*Dr. Vox notes that, contrary to popular belief, finding trials on clinicaltrials.gov does not guarantee that they are legitimate, safe or effective as the listing is not vetted.
Written by Robin Yamakawa
In the media
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.