Clinic touts Down syndrome ‘cure’
Latest in stem cell tourism controversy
A New Delhi clinic that has claimed to help paralyzed Canadians walk again by injecting them with stem cells now says it can use the same treatment to make children with Down syndrome “almost near normal.”
Nutech Mediworld says it has treated up to 16 newborns, toddlers and older children with Down syndrome. According to its medical director, Geeta Shroff, “we have seen that patients actually start improving clinically — they become almost at par for their age.”
Canadian experts say the bold claim risks raising false expectations and public confusion, much like the nowdiscredited “Liberation” therapy for multiple sclerosis, and that it’s playing off the over-hyped belief stem cells have the potential to “cure” almost anything.
It’s also the latest controversy over stem cell tourism, and the growing number of clinics worldwide marketing pricey, unregulated and unproven treatments.
Nutech Mediworld charges US$5,000 to $6,000 per week for its stem cell-based therapies. The clinic says it has treated such incurable conditions as spinal cord injury and cerebral palsy. Around 20 Canadians have sought treatment at the clinic for paralyzing spinal cord injuries, spending upward of $US48,000 each. Shroff says some of her patients have regained the ability to walk with walkers.
More recently, she began working with Down syndrome, one of the most common chromosomal disorders worldwide.
Most cases are caused by a random error in cell division. The child ends up with three copies of chromosome 21, instead of the usual two.
That extra copy causes abnormal neuronal development and changes in the central nervous system, Shroff says, leading to “persistent developmental delays.”
Human embryonic stem cells injected into a child’s muscles and bloodstream can regenerate and repair that damaged brain, she says. They also work at the genetic level, she claims.
In a single case published last year, Shroff reported treating a two-month-old baby boy in September 2014 diagnosed with Down syndrome at birth. The infant had “delayed milestones, lack of speech, subnormal understanding and subnormal motor skills,” she wrote.
After two stem cell therapy sessions, the baby started babbling and crawling, she reported. He had improved muscle tone. “He was social and was able to recognize near ones.”
“The child became almost as near normal as possible cognitively,” Shroff told the Post in an interview. Today, “he’s talking; he’s walking. He was at par with normal children on analysis.”
The former infertility specialist uses embryonic stem cells developed from a single fertilized egg donated by an IVF patient 17 years ago. According to Shroff, “We have witnessed no adverse events at all.”
The Down syndrome treatments, reported by New Scientist, have raised skepticism and alarm. “It’s not at all clear what cells she’s actually putting in patients,” says renowned developmental biologist Janet Rossant, senior scientist at the Hospital for Sick Children Research Institute in Toronto.
“By just putting them into the bloodstream there’s no way to imagine they could contribute to the right tissues.”
Embryonic stem cells can also form teratomas — benign tumours and masses composed of lung cells, tufts of hair, teeth and bone.
The gold standard for any therapy would be a clinical trial comparing treated with untreated children and vetted through proper regulatory systems “that clearly she is not going through,” Rossant says.
The Ottawa Hospital’s Dr. Duncan Stewart, who is leading the first trial in the world of a genetically enhanced stem cell therapy for heart attack, says there’s a “remote” chance embryonic stem cells could help with Down syndrome. “But it’s a stretch.” The injected cells would also likely be rejected and die off with days, he believes. “If the cells are disappearing within days, how are they working?”
“This is a very vulnerable population,” Stewart adds. “They’re very vulnerable to people who are selling hope and have no basis for it.”
But stem cells have taken on almost mystical appeal. “They’ve become a pop culture phenomenon,” says healthy policy expert Timothy Caulfield, of the University of Alberta. The field itself is guilty of making breathless announcements about “breakthroughs” and “cutting edge,” he says. “And people can market that kind of language. This kind of nonsense doesn’t help.”