Written by Corinne Jeanmaire, May 2nd 2024
Miracle vs. reality of unproven / unregulated therapies abroad
Countless people travel abroad in search of expensive treatments that they hope will cure them or at least improve their paralysis. How can you recognize unproven or unregulated therapies? What are the actual results? This article aims to help readers understand the differences between profit-driven treatments offered by many clinics worldwide and rigorously regulated, science-driven clinical trials.
For the sake of clarity…
Patients stand to lose more than just money!
Clinics driven by financial profit may take unjustified risks and overlook ethical considerations. Experience has shown that the pursuit of profitability has led some clinics to operate on patients even when they knew the treatment wouldn’t benefit them. Additionally, there have been cases of serious adverse events, including debilitating pain, tumors, infections, and loss of function.
As an illustrative example, consider the company Cells4Health. Initially based in Turkey, it later moved to Azerbaijan. During this period, at least four patients from the Netherlands and Slovenia reported significant and permanent loss of function after receiving stem cell transplants. In 2007, Cells4Health exploited a legal loophole to establish a clinic in Germany under the name Xcells. The clinic had to close in 2011 following the death of a baby. Subsequently, the company relocated to Lebanon, continuing to offer stem cell therapies to patients worldwide. Currently, Cells4Health appears to have resurfaced in Switzerland, supplying stem cells to a medical tourism clinic in India.
Pictures: Freepik.com
Unproven / unregulated therapies: expectations vs. reality
Therapies offered in China, Panama, Mexico, and India often captivate audiences through exciting storytelling on social media. Driven primarily by financial profit, these companies enroll as many patients as possible. Unlike scientifically-driven clinical trials, they accept patients without any waiting time or stringent selection criteria.
In most cases, customer testimonials describe slight changes and overall health improvements that can be attributed to increased physical exercise and a surge of hope and positivity after surgery. When watching videos of patients post-treatment, you’ll often see individuals “walking” with long leg braces between bars or using a walker. While many perceive this as an impressive gain from the therapy, it’s essential to recognize that it primarily reflects improved fitness rather than neurological recovery.
How to recognise “Unproven / unregulated” therapies?
“Unproven” therapies for spinal cord injuries are prevalent worldwide, particularly in exotic locations. These clinics often capitalize on the latest hyped research related to spinal cord injuries, such as stem cells, exosomes, and electric stimulation. Here are some key characteristics:
Cost and Guarantees:
– Patients are charged fees ranging from approximately €3000 to €20000, with no guarantee of success
– Clinics may even suggest second or third treatments to maximise their profits
Lack of transparency:
– Neither the treatment protocols nor the results are transparent (no scientific publication available)
– The therapies used are not approved by regulatory organizations
Exotic locations and storytelling:
– These clinics often operate in exotic places, adding to their allure
– Patients share their experiences on social media, contributing to the clinics attractiveness
Broad claims:
– These clinics claim to treat various conditions, including Alzheimer’s, erectile dysfunction, and aging. Spinal cord injury is just one of many conditions they purport to address.
In summary, while these therapies may seem promising, it’s crucial to approach them with skepticism and seek evidence-based treatments backed by rigorous scientific research
Clinical Trials: balancing experimentation, commercial enablers and scientific progress
While clinical trials are also experimental and often receive sponsorship from a commercial entity, they will definitely offer a higher level of scientific rigor. Therefore, we recommend that individuals always check whether there is a human trial available for them to enroll in. Websites like scitrials.org can help you find relevant trials. These so-called “clinical trials” are scientifically-driven and offer greater transparency in terms of protocols and results. They undergo approval by regulatory organizations such as the FDA and EMA, and most are listed on clinicaltrials.gov. Importantly, they contribute to global scientific knowledge and advance progress toward curing spinal cord injuries (SCI). Additionally, undergoing therapy in clinical trials is free of charge, although ancillary costs (such as transportation and accommodation) may apply.
Exploring alternative path?
For innovative therapies (such as stem cells, pharmaceutical molecules, peptides, enzymes, growth factors, gene therapy, and biomaterials), we recommend that patients regularly check for available clinical trials. In the case of electro/neuro stimulation, which has accumulated substantial experience and seems to pose limited risk to patients, consider reaching out to your rehabilitation doctor or clinician. They can help determine if a clinical trial or an e-stim treatment dissemination program exists in your region.
If these options are not available, consider contributing to finding a cure for yourself and others by joining or supporting a foundation dedicated to developing therapies for chronic spinal cord injuries and making them accessible to patients. Should you wish to raise funds or donate for chronic spinal cord injury curative research, please visit this page. Thank you!