Enlarge /. Skeletal stem cells are shown in red here.
Stem cells promise to help us repair tissue damaged by disease or injury. Outside of bone marrow stem cells, however, the practice remains largely promising as we are starting clinical trials to determine if we can use these cells effectively. But that didn't stop people from offering stem cell "treatments" without evidence. Many of the clinics that offer these services are located overseas, which leads to the so-called "stem cell tourism". However, some take advantage of the lack of clarity in the Food and Drug Agency regulations to operate in the United States.
A new survey among doctors suggests that a surprising number of their patients use these services – sometimes with serious consequences. And many doctors do not feel ready to deal with the consequences.
The work focuses on neurologists who specialize in the treatment of diseases of the nervous system. These include diseases like Parkinson's and Multiple Sclerosis, for which there are few effective treatments – although stem cells in the case of Parkinson's have gone through some preliminary tests. Given the lack of established options, it would not be surprising if these patients turned to therapies that have not been established, such as B. stem cells.
But are patients turning to stem cells? To find out, a team of researchers interviewed neurologists who are likely to care for these patients, using the American Academy of Neurology, which has over 20,000 members. Only a tiny fraction of the members replied that just over 200 neurologists took part in the survey. But if the numbers that come out of it are representative at all, the survey paints a troubling picture of stem cell tourism.
Almost 90 percent of doctors treated patients with diseases that are currently not curable, and a similar percentage was asked about stem cell therapies. Approximately half of the neurologists said that they had asked 15 or more patients just last year. While the vast majority of patients were only looking for additional information about the alleged therapies, a third looked for the doctor who gave them permission to try it out, stressing the importance of doctors restricting access to untested treatments.
Fortunately, two-thirds of doctors warned their patients against trying one of these unproven therapies. Still, almost two-thirds had one of their patients try untested stem cell therapy – and another 20 percent of them could not contact them until the patients had tried one. And these procedures were not without complications. About a quarter of the doctors said they had a patient with complications from an operation ranging from stroke to hepatitis. However, there was no obvious pattern in the reports suggesting complications were more common than others.
Given the increasing prevalence of stem cell tourism, it can be expected that neurologists have provided information to better serve their patients. But only a quarter felt fully prepared to discuss matters with patients, and 10 percent felt completely unprepared (most were somewhere in between). Participants also said they could benefit from literature that discussed the status of stem cell treatments that could be shared with their patients.
Here, too, no effectiveness of stem cell therapies in neurological diseases has been demonstrated. Clinics that they offer to patients at best chase those patients' desire for something that deals with a currently incurable disease. In the worst case, they are simply fraud. Clinical trials have been started for some diseases and more are likely to follow. Aligning patients to a suitable study and moving away from unregulated stem cell clinics should be part of effective patient care.
This survey is clearly preliminary, given the small group of neurologists who responded. Still, it paints a troubling picture of patients' widespread interest in untested treatments and a medical community that is not always willing or willing to distract them from potentially harmful "therapies". The survey certainly warrants broader follow-up to determine the full extent of the risk, as well as greater public relations work to ensure that neurology is ready to work with patients to guide them away from these clinics and in studies.
Annals of Neurology, 2020. DOI: 10.1002 / ana.25842 (About DOIs).