How do dubious stem cell clinics get patients in the door to make money?
In part they do this via the Internet via the clinics’ own websites.
There are also patient websites, some secret, which may serve ad recruitment tools for specific clinics.
A more general tactic may be the use of so-called “recruiter-patients”.
There is an interesting article from 2011 on this practice in India: Recruiter-patients as ambiguous symbols of health: bionetworking and stem cell therapy in India .
What is a recruiter-patient?
A recruiter-patient is a patient of a specific, for-profit stem cell clinic who is used by the clinic to recruit more patients.
In exchange the recruiter-patient (most often secretly) receives either cash or discounted future treatments for themselves or family members. Apparently, some recruiter-patients recruit for specific clinics, while others push for many clinics.
A similar category of stem cell trickster is the stem cell facilitator, who makes money by directing patients to specific clinics through hype, while not necessarily pretending to be a patient.
The article indicates that this practice is common in India amongst stem cell clinics.
How common is this practice in the US?
Of course it is difficult to know because clinics and recruiter-patients hide what they are doing. Why? It is a form of fraud, potentially something that even could be criminally prosecuted.
However, from talking with stem cell clinic patients who received treatments here in the US, it is clear that the practice does occur in the US.
In India, recruiter-patients work for both adult stem cell and embryonic stem cell clinics.
At other times, it is unclear whether a patient who advocates for a clinic is actually a recruiter-patient or simply a very enthusiastic customer who wants to “spread the word”.
In the article on India, they express serious concerns about this practice:
It is difficult to determine whether such testimonials genuinely portray patients’ experiences of improvement in their medical condition and gratitude towards service providers. But there is no doubt that such testimonials are compelling in nature and content. Stem cell providers, then, exploit the symbolism of “cured patients” to attract new patients. Although it is not clear if “the cured patient” is a grateful patient, or a person paid to act as one, the symbolism of “the cured patient” is crucial to the connection between all involved.”
I think patients have an ethical duty to each other and to potential future patients to not over-sell clinic treatments, especially not in return for secret kickbacks or some other compensation.
Amy brings up a good point. I regularly take part on a discussion board about a medication called Daliresp. This is an FDA approved drug. Many of us who have taken this medication have found it to be effective and we share this information with other patients. I might add that I share it enthusiastically.
I tell other patients seeking stem cell treatment to not be swayed by testimonials on websites. This is why I support allowing autologous treatment as the practice of medicine using safe guidelines and a national registry for patients.
Paul, you seem to have a different approach everyday about risks to patients seeking stem cell therapy, but you aren’t going to be able to stop patients, especially those who have exhausted all other conventional medicine, to not seek treatment. I would love to see your efforts go towards a solution in the near future. Encouraging change to allow patients to access treatment legally, rather than trying to discourage patients via a blog would be far more productive.
This is very common in the USA both the for profit facilitators and the patients recruiting. I think it may often be less defined than you represent. A common scenario is a hopeful patient who spreads the word to friends and maybe gets extra care or a discount on a future service rather than the patient engaging in some formal pied piper type service. This kind of event happens in regular traditional care too. Possibly if it was a regulated legal treatment no one would think much of it…It is also good to remember that many drugs gone bad were discovered first on patient discussion boards so they will discuss the good and the ugly. Industry is now mining these as a resource to alert to from the bench to the clinic complications.
For instance the narcolepsy flu vaccine events affecting about 1 in 55,000 were seen in patient forums at least 2 years ago. No one mentions that this rate is about the same as for those that get the flu. I think patient peer to peer info will not change, perhaps deliberate selling for cells or facilitating might get some penalties if patients start dying but proving it may be another thing