By A. Rahman Ford, PNN Columnist
A new study published in journal Stem Cell Reports, entitled “How to Peddle Hope: An Analysis of YouTube Patient Testimonials of Unproven Stem Cell Treatments,” looks at over a hundred videos by stem cell patients posted on YouTube.
The study appears to have an underlying anti-democratic agenda – to shame YouTube and other internet platforms into removing positive patient testimonials about stem cell therapy (SCT). Indeed, the use of the pejorative term “peddle” in the article’s title immediately undermines the study’s credibility.
This research epitomizes how propaganda can masquerade as scientific research, and how data can be twisted to meet its masters’ agenda.
The study comes on the heels of a recent federal judge’s decision that the FDA could regulate stem cells made from adipose tissue – a patient’s own fat cells. Although SCT critics generally praised the ruling as a victory for government oversight, outlets like the Washington Post lamented that it would likely not deter clinics from offering the therapy.
A New York Times article accused the FDA of not acting until patients were harmed, and using enforcement actions that consist only of warning letters without any real teeth.
STAT News even criticized the National Institutes of Health for allowing stem cell clinics to “co-opt” the nation’s clinical trial database.
Stem cell critics have apparently realized that the three previous stages of their vilification campaign have failed. These stages were:
Vilify the patients: Promote the condescending narrative that patients are desperate, ignorant and too stupid to research stem cell therapy for themselves and decide whether it is best for them.
Vilify the clinics: Stem cell clinics are run by shady charlatans who engage in duplicitous business practices that take advantage of desperate, ignorant and pitiful Americans by selling them “unproven” products that couldn’t possibly help them.
Vilify the federal government: Federal agencies have not acted quickly or robustly enough to enforce the regulations that govern regenerative medicine, thus tacitly approving the growing “wild west” of clinics offering SCT.
The Push for YouTube Censorship
Critics now appear to be setting their sights on a fourth vilification stage. In their desperation, they have decided to take a more authoritarian turn towards internet censorship.
The new study’s authors examined 159 YouTube testimonials from patients who had SCT for ALS, multiple sclerosis, Parkinson’s, cerebral palsy and spinal cord injury. Not surprisingly, they found that most of the videos were published by providers and nearly all discussed the benefits of SCT in improving pain, overall health and quality of life.
The authors concluded the YouTube testimonials “may be a potent marketing tool” and “are likely to have a wider reach and significant impact on influencing health behavior.”
The article’s final sentence reveals the authors’ true motive: “Adopting multiple approaches, including patient education, enhancing patient treatment options, and regulatory oversight, are required to make a significant dent in reducing the number of clinics providing unproven SCTs.”
Setting aside the numerous, glaring and egregious methodological shortcomings of the study, the more important issue is one of broader public policy. These authors appear to be implicitly advocating that YouTube and other internet sites censor videos that are “misleading” or “deceptive” or not published by “reputable organizations.”
And who or what is to determine whether any particular video meets this criteria? Wired published an article with the ominous headline “YouTube Testimonials Lure Patients to Shady Stem Cell Clinics,” implicitly calling on YouTube to take action. The notion isn’t farfetched. YouTube has been in the news a lot recently for censoring videos, using nebulous criteria and subjective standards.
Apparently, SCT critics have jumped on the YouTube censorship bandwagon. It’s a wagon that seems to claim a new victim every day, and its victims are usually those who threaten the status quo. Unfortunately, it’s a wagon that travels the pothole-riddled road of authoritarianism. It’s a road patrolled by people in strange uniforms, with sophisticated and articulate weapons, who dispense a vicious propaganda, and who always claim to have your best interest at heart.
Please make sure to call, email and/or tweet your state and federal legislators to voice your support for the availability and affordability of stem cell therapy. The people who suffer with pain and disability will not be silenced and will not be censored. Our democratic voice will be the response to their authoritarianism.
A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.
Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.