Desperate patients with incurable neurological diseases are spending tens of thousands of dollars on stem cell procedures that do not work, a study has revealed.
Stem cells can be turned into almost any other type of cell in the body. Stem cell therapy, or regenerative medicine, is a legislative treatment that aims to repair tissues by growing them in a lab and implanting them into a patient. Cancer treatment can include stem cell transplants, for instance.
According to a study published in the journal Annals of Neurology, so-called "stem cell tourism" sees clinics target patients with unproven procedures, falsely promising to cure diseases. Their victims often have incurable diseases like multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS), and spinal cord injuries, the study found. Practitioners can charge patients tens of thousands of dollars for potentially harmful or useless procedures.
The authors wrote that such patients are vulnerable because their conditions "cause both a loss of independence and clinical deterioration that compel patients and families to engage in a state of 'therapeutic hope,' pushing desperate patients to pursue radical therapies to regain function at any cost."
The study involved 204 academic neurologists in fields often targeted by bogus stem cell clinics: strokes, neuromuscular disorders, MS and neuroimmunology, and autoimmune neurology. Between September 28, 2017 to October 25, 2018, participants completed a survey on their experiences with patient questions on stem cell tourism.
89 percent of respondents said patients or caregivers had asked them about stem cell treatments, including 91 percent who said the patient's condition was incurable, and 43 percent who asked for approval to have procedures. The researchers said it was of note that 65 percent of the neurolgists had a patient receive a stem cell procedure. These were "overwhelmingly" in relation to stem cell tourism, not the few FDA-approved clinical trials.
Approximately a quarter of neurologists said their patients suffered complications due to the procedures, including four whose patients died. Others had strokes, brain inflammation, limb weakness, worsening and relapse of MS, sepsis, hepatitis C, seizures, meningitis injections, infections, and spinal cord tumor.
One doctor said a patient had a spinal cord injury from dropping off the table during the procedure.
Others said patients did not have compilations, but lost thousands of dollars without improving their health. One 60-year-old patient spent $25,000 on stem cells for Parkinson's disease, while another person with MS spent almost $50,000 on a stem cell procedure that left them with a pinched nerve and hepatitis C.
"Strikingly, many of these stem cell clinics have patients pay for the procedures in cash and do not provide any documentation on the details of the procedures performed," the authors wrote.
The survey was limited, the team said, as the participants may not have recalled their patients' experiences accurately. "However, the results indicate that complications of stem cell tourism can be severe and they are underreported," they said.
Dr. Jaime Imitola, senior author of the paper and director of the Comprehensive Multiple Sclerosis Center at UConn Health, said in a statement: "They use fancy websites promising cures left and right, but which are nothing of the sort. They steal your money but give nothing in return."
He told Newsweek: "Lay people call this stem cell 'therapies,' but the truth is that a therapy is something that is useful and it is established only when it is proven. A therapy is something that we do with an intent to cure patients and is based on proof of principle, efficacy, safety and FDA approval. Therefore, injecting fat cells, or neurospheres [a culture of neural stem cells] in the spinal cord of patients without hard proof that works, is not a therapy even if you have some evidence in mice."
Imitola said stem cell tourism is an illegal and unethical industry selling snake oil and undermining public confidence in science.
Uncommon Knowledge
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Kashmira Gander is Deputy Science Editor at Newsweek. Her interests include health, gender, LGBTQIA+ issues, human rights, subcultures, music, and lifestyle. Her ... Read more
