Some patient feel they simply don’t have time to wait for the culmination of good evidence from protracted clinical trials. Take this fundraising plea from a patient with ALS, a condition in which half of patients die within three years of their first symptoms:

“I am down to 32% of breathing, can't talk and loosing (sic) control of my hands and legs. I have where a breathing mask for 12-14 hours a day... PLEASE HELP!”

Doesn’t the patient who is “down to 32% of breathing” have a right to try anything that might save them, crowdfunding to do so, even if that treatment is administered an unregulated clinic? Barker is concerned that it’s this vulnerability that is being exploited, citing the potential risks, including tumour formation.

But he also believes that legitimate stem cell research will suffer. “If it goes wrong, the regulators may ban such therapies for times to come based on the belief that these clinics offer essentially the same therapies as centres which have slowly worked towards clinical trials through proper rational approaches,” says Barker.

Although regulators must play a role in tandem with cross-border partnerships, there is a growing consensus that crowdfunding platforms should take responsibility, too. Campaigns for treatments that are unsafe or lacking evidence continue to raise millions of dollars.

Protecting patients

It’s true that these platforms can empower patients to explore options, maintain hope, and cover insurance gaps, while enabling families and friends to extend their support. But shouldn’t they also ban bad actors and halt the spread of misinformation (campaigns are shared hundreds of thousands of times across social media)?

Not necessarily, suggested a GoFundMe statement to Gizmodo earlier this year: “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.” After a call for crowdfunding sites to rigorously vet cancer appeals to protect patients from unproven or dangerous treatments (such as “ozone therapy” and vitamin infusions), GoFundMe has banned users from seeking donations for treatment at certain clinics month and now report they are actively evaluating fears around certain stem cell campaigns.

“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. We are reaching out to experts and medical regulatory authorities in the space to understand the latest regulatory developments and how these developments affect our customers”, they said in a statement.

When presented with similar concerns, JustGiving previously stated: “We don’t believe we have the expertise to make a judgment on this.” In an email to the BBC, they asserted that they ensure that all the crowdfunding pages obey the legal requirements and assert that “the safety and wellbeing of people using our platform, whether they’re raising funds or donating to a cause, is always our priority”.

Tree of Hope, a UK crowdfunding organisation and children’s charity, claim a different approach. Their medical committee takes advice on campaigns from the UK Stem Cell Foundation. “Families turn to Tree of Hope when all other options have been exhausted,” says Lee Vallins, deputy chief executive and head of family support at the charity. “We work with some amazing, though often desperate parents and ensure we work through options with them, at their pace.” But although they have supported a number of families to crowdfund for stem cell transplants, there are safeguards in place.

“We readily spend time with parents calling us seeking advice on this type of therapy and we quite often do refuse an application if parents are unwilling to consider recognised clinical trials or alternative options to the treatment,” says Vallins. “Whilst not one of the larger crowdfunding organisations, we certainly strive to be one of the most ethical through our checks and measures throughout the process.”

Hunting for hope

Jay Shetty eventually received a two-hour infusion of stem cells through a cannula in his arm at Duke University. What were Shilpa’s expectations? “I knew it wasn’t a cure, I knew he wasn’t going to come out of it walking and running. But I thought at least Jay would be able to sit up in six months’ time, to be honest. Unfortunately, that hasn’t happened,” she says. “We haven’t seen any dramatic changes but he is not as spastic, he is more aware, for us a family we think it’s quite big. It’s a sort of foundation for all the physiotherapy.”

But was the stem cell therapy responsible for this improvement? Perhaps Jay would have acquired more skills as he grew up anyway? “It’s difficult to pinpoint because we have been doing therapy for a long time,” says Shilpa.

To date, stem cell studies on cerebral palsy at Duke University Medical Centre led by Joanne Kurtzberg, haven’t quite lived up to expectations although work is ongoing. In 2017, 63 children with cerebral palsy were randomised to treatment (a single infusion of cord blood) or placebo. Disappointingly, the researchers found no change in the trial’s primary endpoint: motor function one year after baseline infusion. They did report better outcomes at higher doses (highlighted in some media coverage) but Paul Knoefler at the UC Davis School of Medicine isn’t persuaded. “Based on the small study size, a high-degree of variability within samples in the same groups, changes in the placebo group from what was expected, and the modest nature of the possible differences with the higher dose relative to placebo, I’m not convinced the reported effect was meaningful,” he says. He also tells me that along with a study from the Duke group on autism, these results “don’t suggest a strong positive effect of umbilical cord cells for paediatric neurological conditions”.

Cells4Life, the cord blood stem cell bank that supported Jay’s fundraising, still state on their website that “the trials at Duke have shown cord blood can reverse the symptoms of cerebral palsy”. (Cells4Life state their mission is to “store every baby’s cord blood”. Their pricing varies between £1,495 ($1,816) and £2,090 ($2,538) with an additional annual storage fee.)

The Shettys remain undeterred. “If we found a match and if Duke open a similar trial I am more than happy to pay for it,” says Shilpa. “If we have money, we will just keep doing it again and again to be honest. In Jay’s case there are a lot of blank spaces in his brain and he needs new cells.”

Meanwhile, she and other parents will continue to scour the internet late at night, searching for anything might help their children, hunting for hope, calling out for a cure. As long as they do so, stem cell clinics will promise to answer their call.

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Jules Montague is a writer and neurologist in London. Her first book, Lost and Found, explores what remains of the person when the pieces of their mind go missing - from dementia and brain injury to sleep disorders and multiple personality disorder. Her second book, The Diagnosis Cure, will be published next year and explores how medical diagnosis is deeply tainted by the forces of commerce, imperialism, and sexual discrimination.

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