A Link to Medical Tourism: Part 5 of The Rise and Fall of “Stem cells for Autism” at Duke University
This is the fifth in a series about Duke University’s experiments on autistic children, in which young children, including those with IQs below 70, were injected with stem cells to see if it would stop them from being autistic. This series looks at the 9 years from first FDA approval in 2014, to the addition of Expanded Access (EAP) “pay to play” clinical trials, to pushback from experts and finally the cancellation of the EAP in 2023.
The IMPACT study & medical tourism to unlicensed clinics
From the beginning of Duke’s clinical trials into whether stem cell infusions could treat autism, parents used crowdfunding tools to raise funds for medical tourism, with travel to Duke’s clinic as well as to travel to overseas clinics, especially the Stem Cell Institute in Panama (STIP). Unfortunately, there is no evidence that the Duke team discouraged this medical tourism, and these clinics have successfully represented themselves as associated with the Duke project as part of their marketing.
In their study of crowdfunding for stem cell medical tourism, bioethicists Jeremy Snyder and Leigh Turner noticed that autism parents referred to the Duke study in their campaigns, which gave an air of scientificity to the unlicensed clinic they were traveling to. Says Turner:
“If you can draw on an association with a really well-regarded university like Duke or just use the language of research and clinical trials and studies and point people to peer-reviewed journal articles, all of that supports that this is ‘something’ that this is real and legitimate and proven to work…and will help them to sell that product. We saw with these campaigns where they were looking for money to seek treatment in Panama that the website that they were going to for the Stem Cell Institute has links to papers published by the Duke group.”
Stem cell biologist Paul Knoepfler told me he had become concerned the Duke program and the Stem Cell Institute of Panama may have, in his words, “become entangled over the years.” STIP CEO Neil Riordan has reinforced the idea of a connection between his clinic and Duke by posting a selfie with Kurtzberg and making assertions that he attended the meeting of the Marcus Foundation where the foundation decided to fund the Duke study with a $40 million grant, and that he was asked by the Marcus Foundation to review the Duke proposal to the Marcus Foundation.
This is further complicated by the fact that Marcus himself was a patient at STIP and has promoted it, and that Marcus was the founder of the Marcus Center for Cellular Cures at Duke University.
So let’s unpack this. What exactly is medical tourism—and how does it impact autism families in the context of Duke’s failed stem cell trials?\
Crowdfunded medical tourism
Medical tourism—where individuals travel abroad to receive a treatment—is a booming industry. Some of us know it in its more mundane form, such as people getting dental care not covered by their insurance while on holiday in Mexico. But there is a much darker side to medical tourism, wherein cancer patients, chronic pain sufferers and desperate parents travel abroad for unproven treatments that replace evidence-based standards of care.[1] Turner describes medical tourism as a system of customers typically “paying as individuals, a cash on the barrel, out-of-pocket basis”. Many medical tourism dealers also pitch the treatment as part of a vacation experience.[2] As Turner told me:
“Facilities are advertising medical procedures, while taking advantage of local tourist attractions as part of their marketing pitch to try and draw people there…the idea being that you can travel to have a medical intervention, but also enjoy local tourist attractions.”
Families of autistic children have used crowdfunding, where individuals use online tools like GoFundMe to build their own fundraising pages, for various aspects of their care, including useless and even harmful products and services. Turner and his colleagues’ research into crowdfunded medical tourism has shown that parents enrolled in or waitlisted for the Duke program used crowdfunding campaigns.
Some of these crowdfunding campaigns were shared in autism parent Facebook groups. In early 2023, there were 4,700 members in one group selling stem cells for autism, with 13,000 in another. Families linked to their crowdfunding campaigns through these pages as well as their social media pages, bringing in dollars for their medical tourism as well as an audience for the marketing of stem cells as an autism treatment.
According to Turner, who has been tracking online crowdfunding activity, GoFundMe pages for unproven medical interventions often repeat the false claims of sellers to an even broader audience. In 408 stem cell-related GoFundMe campaigns that Turner and bioethicist Jeremy Snyder studied, 43.6 per cent of campaigns made “definitive statements about the efficacy of these interventions despite a lack of supporting evidence and an additional 30.8 per cent made optimistic or hopeful statements.” Campaigns rarely mentioned any of the risks associated with the procedures, “and when they did, they declared that there were no risks or fewer than in proven treatments.” (cited in Snyder, 227.[3])
Within a crowdfunding campaign, autism fakery can become normalized to friends and families who trust the claims made by their friend or relatives offering a de facto endorsement of the treatments. The platform’s misinformation is then amplified via sharing on social media. Friends and family may suspend their skepticism about unproven treatments simply because they want to help their loved ones have hope; they may also want to fit into their peer group, as donations are often visible on the page. The desires to help is leveraged in the wording of appeals on GoFundMe, with the company advising campaigners to use personal narratives and to “share messages of hope,” advising:
“People will be more willing to support your cause if they have a full understanding of the financial, physical and emotional trouble you’re experiencing,” the guide advised. (Cited in Snyder, 230.[4])
In their research examining 10 crowdfunding campaigns related to Duke’s project and 76 for the Stem Cell Institute in Panama, Snyder and Turner note that crowdfunding campaigns directed “significant sums of money to businesses engaged in direct-to-consumer advertising of unproven and unlicensed stem cell interventions.” They also observed that many campaigns took on the language of questionable research studies such as the Duke trials, claiming that the results of the treatments would be shared with the FDA and that their medical tourism would be contributing to science and progress in the treatment of autism and other conditions.
This misinformation spread widely: as Turner and Snyder documented; the 408 campaigns for unproven stem cell treatments were shared on Facebook and Twitter at least 111,040 times (cited in Snyder, 227). Interestingly, supporters “shared” the campaigns more than 8 times more than they actually contributed to them.
No guidance from Duke?
Autism parents appeared to have little to no guidance from the stem cell trials team at Duke University when they sought stem cells outside of the US. “We have researched hospitals outside of the United States and there is a reputable medical group performing the Stem Cell Therapy in Panama City, Panama,” wrote one campaigner, describing a non-evidence-based stem cell treatment for children. In the Facebook parent groups for parents seeking stem cells that I joined from May 2020 until September 2021, several parents posted email replies they’d gotten from Duke University when they’d asked the project team Duke whether they should take their children to the clinic in Panama while wait-listed for the Duke experiments.
They received a reply from project lead Dr. Joanna Kurtzberg that briefly outlined potential health risks of going to a direct-to-consumer clinic outside of US FDA jurisdiction. It concluded:
“While these may be risks you choose to take, I would only recommend taking them if you knew that the potential benefit of the therapy were considering worth the risk. - Dr K.”
Connections between the Duke team and the Stem Cell Institute (Panama)?
“Patients at Stem Cell Institute enjoy a VIP experience as soon as they step off the plane in Panama,” read Riordan Technologies’ Autism website in 2023. “Our Patient Coordinator team helps prepare everything for your stay to feel like a vacation while you receive treatment in our clinic. You and your family will enjoy all of the amenities The Hilton Panama has to offer, including the convenience of our clinic being attached to your hotel.”
With this pitch, the Stem Cell Institute, Panama (STIP) recruiting autism parents by making their experience as easy to plan as possible, with vacation-like qualities the whole family could enjoy. Its website claimed that “Stem cell therapy with Golden Cells™ was being used to help improve the lives of those living with autism.”
Panama does not have the same regulations about stem cells as the US, making it an easy spot for American doctors like Riordan to cash in by offering stem cell treatments for a range of conditions unapproved by the FDA or Health Canada. In 2017, Riordan wrote a book promoting the clinic for medical tourism. Entitled Stem Cell Therapy: A Rising Tide, it included testimonials from Bernie Marcus and others with a range of conditions, filling readers with a sense of promise and hope.
There are, of course, reasons that US regulators are careful in their approval of stem cells and stem cell clinics. A 2021 review of reported adverse events during stem cell infusions by The Pew Trust showed that patients receiving stem cells infusions at unregulated clinics had suffered from the following: serious bacterial infections, including at least two cases of septicemia; partial or complete blindness; paraplegia; pulmonary embolism; cardiac arrest; tumors, lesions, or other growths; and organ damage or failure in several cases that resulted in death. Patients also reported excessive pain or worsening of the conditions for which they had sought relief from the “stem cell” infusions.
Some Duke families traveling to STIP were waitlisted the Duke pay-to-play EAP. Other families were traveling to STIP more stem cell infusions after their child had endured Duke’s experiments, with the hope they would see results following the “more is always better” fallacy. Once Duke’s EAP was canceled, parents who had been waitlisted sought out services at STIP because they could no longer buy them from Duke University. One parent’s GoFundMe, in which they claimed that a Duke representative directed them to STIP, was shared on Facebook hundreds of times.
Some STIP crowdfunding campaigns stated that they chose STIP (or other offshore clinics) because they couldn’t access the Duke program. Some cited the fact that members of Marcus’s family had had stem cell infusions at the Stem Cell Institute; with Marcus’s ties to Duke, perhaps this promoted trust in the Institute. "A lot of families tie the Duke program and the Panama clinic together and kind of think of them as not as the same thing but as a continuum," Knoepfler told Business Insider.
Like the parent Facebook groups, crowdfunding pages are an echo chamber of their own—with health misinformation rarely being contested and even more rarely removed by the crowdfunding platform. Snyder, who has reported misinformation to GoFundMe without receiving replies or action from the company, told me:
“If you’re largely sharing the pages with your own social network and friends and family and the people you’re trying to raise money from, they may not be the sort of people that are likely to report you as spreading misinformation.”
Much like the autism-vaccine myth, which was repeated by thousands of people who cited a discredited and eventually retracted paper,[5] the façade of legitimacy for stem cell autism therapy overshadows the reality of fact. Duke’s pre-existing publicity, combined with crowdfunding pleas, reinforced the idea that stem cell infusions are a legitimate form of autism therapy. Even after the Duke pay-to-play drug trials ended, unregulated clinics were able to continue to leverage the hype. But while these clinics manifest clients by creating the illusion of evidence, the evidence itself tells a different story: No benefit, clear harm.
Coming Tuesday: Will projects like the Duke experiments soon be obsolete? The shifting nature of autism research.
[1] The Bone and Joint Journal has done an excellent paper on this. I also discuss the potentially devastating effects of medical tourism for cancer in this 2021 article I wrote for Healthy Debate.
[2] In addition to serious illnesses, medical tourism is also sometimes part of the wellness journey. These days, the wellness industry appears to be doing very, very well. A 2021 report by the Global Wellness Institute reported that the global health and wellness tourism market generated $720 billion in 2019.
[3] Jeremy Snyder, Exploiting Hope. Oxford UP. 2020.
[4] Jeremy Snyder, Exploiting Hope. Oxford UP. 2020.
[5] I’ll be discussing the Wakefield myth in the SubStack this January, when I post another chapter about the antivaccine movement’s relationship with Autism Speaks.