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Patients with neurological diseases seeking stem cell treatments

24 August 2020
By Dr Patrick Foong
Law Lecturer, Western Sydney University, Australia
Appeared in BioNews 1061

A recent study in the USA suggests that some patients with neurological disorders, such as multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS) and Parkinson's disease, are increasingly seeking information on stem cell treatments as a therapeutic option from their doctors. This group sent out a survey to neurologists in the USA to assess their experiences. Given the limited established alternatives, according to the survey findings, many patients enquire about stem cell therapies, including those that have not been proven. Surprisingly and disturbingly, some neurologists do not feel entirely prepared to counsel patients asking for advice on such therapies.  

While stem cells hold the tremendous promise of assisting our bodies to mend and restore cells and tissues damaged by illness or injury or ageing, at present, the reality is that other than bone marrow stem cells, it remains mostly a promise. Scientists are still actively researching to determine their safety and efficacy. 

There are unscrupulous clinics that advertise so-called stem cell therapies with no basis in evidence. Several of these for-profit establishments that proffer these treatments are based offshore (they used to be found mostly in developing countries) and some desperate patients travel to these destinations (known as stem cell tourism). Nowadays, there are also such clinics in developed nations such as the USA and Australia that exploit the loopholes in the law, although there have been recent amendments.  

Clinics that offer these services are taking advantage of vulnerable patients' desperation for a cure for currently incurable illnesses and conditions. For certain diseases, there are several clinical trials which are underway. As part and parcel of professional and ethical patient care, it would seem appropriate for doctors to lead and influence their patients to a legitimate study, an approved clinical trial.   

Overall, the findings of the survey are somewhat troubling. There is pervasive patient interest in pursuing stem cell treatments, including unproven ones, with the survey showing that 89 percent of the respondents had patients asking them about stem cell therapies. 

What is even more disturbing is that it reveals a subset of medical professionals that is currently not ready to counsel patients whether to pursue such treatments. Only 28 percent of the respondents commented they were fully prepared for discussing such matters with their patients, 40 percent were prepared, 28 percent were somewhat prepared and eight percent were completely unprepared! Given that unproven stem cell treatments have been around for a while, one might assume that neurologists are already equipped to educate and engage in difficult conversations with their patients.

The untested treatments are potentially risky and some patients had adverse medical events. The survey reported that 25 percent of the neurologists had patients suffering from complications arising from the procedure, ranging from tumour formation to death. 

On the neurologists' response to their patients seeking permission to receive stem cell therapies, 4 percent encouraged them, 7 percent agreed but did not encourage, 23 percent neither agreed nor disagreed and 66 percent of the doctors cautioned their patients against trying one of these unproven therapies. Overall, 73 percent of respondents felt that an educational tool on stem cells could be developed. They said that they would benefit from literature that explores stem cell treatments which could then be passed on to their patients. The survey suggests that standardised, evidence-based guidelines can improve the outcomes of patients and doctors. As the article says 'The findings of the survey suggest that we need more education even among professionals. We live in a post-truth or post-fact world where there are segments of the population that do not believe in science.'

To this end, the research team has created a user-friendly single-page handout that cautions patients on the risks of pursuing unproven stem cell therapies. Very importantly, it also contains a link to the respectable International Society for Stem Cell Research website for reliable and more comprehensive information. Multiple languages of this handout are available. The handout can be easily downloaded, printed and distributed to patients in the doctor's office. This particular effort is indeed commendable. But to be effective, this certainly requires the cooperation of the neurologists.   

As the study findings suggest that the number of complications related to stem cell treatments is relatively high and increasing, the researchers recommend the establishment of a national registry to document the incidents of neurological complications of unproven stem cell treatments together with de-identified data to give additional useful information. Moreover, the study also suggests more proactive action to be taken, for example, including such discussions during the plenary sessions in the annual conferences of neurology societies such as the American Neurological Association and increased stringent regulation.

SOURCES & REFERENCES
Complications from 'stem cell tourism' in neurology
Annals of Neurology |  7 July 2020
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