In July 2017, Jodi Kaufman Perskin spotted an intriguing post in a newly formed Facebook group where parents share advice on stem cell therapy for children with special needs. She had joined the group looking for help for her teenage son Jason, who has autism.
In the post, pediatric surgeon Thom Lobe introduced himself and included a link to Regenevéda, his chain of ‘regenerative medicine’ clinics in Beverly Hills, New York and Chicago. Lobe’s profile picture shows a bald man in his 60s with a white goatee and a surprisingly youthful complexion. His clinics focus on wellness and anti-aging treatments but also offer stem cell therapy for autistic children. “I’d be happy to provide my services and knowledge as a resource for you and answer any questions that come my way,” Lobe wrote.
Jason lives in New Jersey. Lobe’s primary practice is in Chicago, but Jason’s father had taken him farther for stem cell treatments before. In 2015, he and Jason had flown to a clinic in Panama and, later, Mexico for stem cell treatments costing about $15,000 each. In Mexico, Jason was put under light sedation so that stem cells could be withdrawn from his hip bone and injected into his spine. After that treatment, Jason’s language ability clearly improved, Perskin says, but she disliked that the procedure required sedation.
Lobe’s method, by contrast, sprayed donor cells up the nose or injected them into the bloodstream. This approach seemed safer to Perskin. Lobe, too, seemed more trustworthy than the chiropractors she had heard were offering the procedure. “He’s a surgeon, and I feel more comfortable with him,” she says.
A month after Lobe’s Facebook post, Perskin and her husband took Jason to see him. “Jason did awesome in Chicago with stem cells today,” she posted in the group in August 2017. “So far, no side effects.” Lobe recommended the Perskins bring Jason four times a year, at a cost of $8,500 per visit. Perskin says she didn’t want to “overload” Jason’s body and decided to take him only twice per year.
Many parents of autistic children are, like the Perskins, turning to social media to exchange information on stem cell clinics, which have proliferated in the United States and abroad over the past few years. These forums play down the fact that only a small fraction of stem cell treatments — specifically, those for generating blood cells — have been proven safe and effective in the eyes of the U.S. Food and Drug Administration (FDA).
“Human suffering plays a role in driving this marketplace,” says Leigh Turner, a bioethicist at the University of Minnesota in Minneapolis. As of May 2017, at least 432 companies run 716 stem cell clinics in the U.S., marketing treatments directly to consumers via the internet, according to a database maintained by Turner. Only 13 of those companies made claims related to autism, but interest in the area has been growing, Turner says — in part thanks to a high-profile, ongoing clinical trial at Duke University in Durham, North Carolina.
One Facebook group, called “Stem Cells for Autism 2.0,” has attracted 3,600 members since it launched in March 2018. “The consensus among parents is that it’s scarier not to do anything,” says its founder, Susan, who compiled a secret list of 15 U.S. doctors who offer stem cell infusions to autistic children like her son. (We have withheld Susan’s last name to protect her privacy.) She compares her efforts to those of the “Dallas Buyers Club,” the underground group of HIV-positive people who smuggled unapproved drugs into the country in the 1980s.
Despite the approach’s popularity, the FDA has been slow to act. The agency warned consumers in November 2017 that the treatments may be “illegal and potentially harmful” and announced plans to tighten its rules in 2020. Until then, however, its primary strategy is ‘enforcement discretion.’ The FDA has sent formal warning letters to 4 companies over the past year or so, while urging 20 more to “engage with the agency.” Some state regulators and other agencies have picked up the slack. In October, a California doctor who promised to “reverse autism symptoms” agreed to pay a $525,000 settlement to the Federal Trade Commission over charges of deceptive health claims.
Meanwhile, many other doctors, like Lobe, continue to market stem cell treatments for autism. “I find it astonishing that this marketplace exists as a result of regulatory inaction,” Turner says.