Miracle vs reality of unproven / unregulated therapies abroad
For the sake of clarity…
Patients stand to lose more than just money!
Because they are mostly driven by financial profit, the clinics might take some unjustified risks and oversee ethics. Experience tells that the quest for rentability incited them, in the past, to operate on a patient even though they knew that the latter would not benefit from the treatment
There has also been cases of various serious adverse events such as debilitating pain, tumour, infections, loss of functions…Or worse.
As an example, the company Cells4Health operated from Turkey at first, had to leave and then reopened in Azerbaijan. From this period, at least four patients from the Netherlands and Slovenia reported very significant and permanent loss of functions after they received the stem-cells transplant. As of 2007, the company made use of a legal loophole to set up a clinic in Germany under the name of Xcells. The latter had to shut down in 2011, after the death of a baby. Subsequently, the company moved to Lebanon and continued to offer stem-cell therapies to many patients from all over the world and for many years. Right now, it seems that Cells4Health was reborn in Switzerland and now supplies stem-cells to a medical tourism clinic in India.
Pictures: Freepik.com
Unproven / unregulated therapies: expectations vs reality
Therapies offered in China, Panama, Mexico, India make up for exciting story-telling on social media. Being first and foremost motivated by financial profit, these company will enrol as many patients as possible. Unlike scientifically-driven clinical trials, they accept patients without any waiting time nor tight selection criteria.
In most cases, customers testimonies describe slight changes and general health improvement that can be accounted for by increased physical exercise and by an upsurge of hope and positivism after the surgery. Looking at videos of patients after the treatment, you will often see patients “walking” with long leg braces between bars or with a walker. Most people will consider this as a impressive gain from the therapy. Actually, it is a great progress for the patient fitness but it has absolutely nothing to do with neurological recovery.
How to recognise « Unproven / unregulated » therapies?
“Unproven” therapies for spinal cord injury are broadly available around the globe…You can find them in many exotic countries. They mostly surf on spinal cord injury latest hyped research, e.g. stem-cells or exosomes as well as electric stimulation. Here are a few characteristics: You will be charged for the cost, ranging from about €3000 to €20000, without any guarantee for success. Often, the clinic will suggest a second and even a third treatment, so as to maximize their profit.
- Neither the protocol nor the results are transparent (no scientific publication available). The treatments involved are not approved by regulatory organizations.
- They are often located in exotic places and offer a potential for great story-telling by patients on the socials, which adds up to their attractiveness.
- They claim to help treat conditions ranging from Alzheimer, to erectile disfunction and aging! Spinal Cord Injury is just one of these many conditions.
Clinical trials are experimental too, but they are mostly driven by science
We advise to always check whether there is a human trial for you for you to enrol. You can do so on websites such as scitrials.org. The so-called “clinical trials” are scientifically-driven and are much more transparent in terms of protocol & results. They are duly approved by regulatory organizations (e.g. FDA, EMA) and are mostly listed in clinicaltrials.gov. Last but not least, they add up to global scientific knowledge & thereby advance progress towards curing SCI. Last but not least undergoing the therapy is free of charge (though you might have to pay for ancillary costs, e.g. transportation and accommodation).
Is there another way?
For innovative therapies (e.g. stem-cells, pharmaceutical molecules, peptides, enzymes, growth factors, gene-therapy, biomaterials), we advise patients to regularly check if a clinical trial is available for them. For a therapy like electro/ neuro stimulation for which there is now a lot of experience and limited risk for the patient, we advise you to contact your rehab doctor or clinician to check if either a clinical trial or a e-stim treatment dissemination program exists in your region.
By lack of the above possibilities, you can contribute to finding a cure for yourself and/ or for others, by joining or supporting a foundation that is clearly focused on developing therapies to cure chronic spinal cord injury and to bring them to the patients.