Disclaimer (of sorts): I am a myeloma patient of now nearly 7 years’ standing and a stem cell transplant recipient. The reader may keep this in mind as I delve into a fascinating (for me at least) topic of one of the latest of the never-ending line of medical scams.
When I was younger as a kid, long before I became much of scientific rationalist, I would wonder how anyone could believe that this or that home remedy would cure the “heartbreak of psoriasis,” as the television commercials would trumpet. It was only three or so generations ago that we still had “Carter’s Little Liver Pills,” “Lydia Pinkham Pills,” Black’s Draught,” and a fair number of other nostrums of no scientific worth left over from the late 1800’s and early 1900’s. My wife’s own great-grandfather used to peddle in the southern Appalachians of NC and VA a home remedy elixir good for almost anything that was, in reality, a flavored elixir of alcohol and laudanum (opium!).
I could go on and on. And I will just a little more…One of my other favorites that did command some subscription among the rich and glitterati of the 1960’s and 1970’s, was the craze of Gerovital. This intrigued me because of a few goofy associative factors. First, it was made and dispensed in Rumania. I thought that contributed to its weird and exotic, and perhaps even dangerous factor, as one had to travel to clinics in a “Commie” country to obtain it. Second, it sounded like the all American and incredibly well known American iron elixir, “Geritol.” That was advertised constantly, and I thought it always hilarious that it was for “tired blood,” Back to Gerovital of Rumania. This held credence inexplicably for years. It was reputed to slow aging and movie stars, always a gullible and dumb crowd, flocked to clinics run by flacks in white coats with exotic Eastern European accents, always charging Big Bucks that only people “with more money than sense” as folk wisdom so aptly describes such doofuses, could afford. ‘If it costs a lot, it must be worth something.’ Just like penny stocks my father would always say.
Quack cures among the movie stars used to have a plethora of takers. The most famous and perhaps saddest one in my slightly lengthy memory was that of Steve McQueen. He developed abdominal cancer, either pancreatic or gastric, I am not sure which at the time of this writing. He headed down to Tijuan Mexico to the then famous clinic that utilized the then famous “natural” cure of “Laetril.” For those readers who are not familiar with this, Laetrile was some sort of extract of apricot pits of all things. It was reputed for a brief time in the 1960’s as a treatment for cancer and a number of persons went south of the border in a desperate search for medical aid when somewhat primitive chemotherapy for cancers failed. And of course Steve McQueen died within months of his treatment.
Contemporary medical scams are more flashy, have more trappings of science, but still do as scams have always done. Such fleecing operations typically cloak themselves in the scientific metaphors and well-known names of the times. The purveyors and installations are always called pretentious names such as “Institutes.” Beautiful people are the spokespersons or operator/heads of such. [Doesn’t sound different than most usual advertising does it…] The claims are just south of outrightly outrageous. Benefits point toward “breakthroughs,” and the near “miraculous,” that are “duplicated nowhere else,” [such as in replicative studies…]. Often seminars are offered in large metropolitan areas. Discounts of fees are offered in breathless haste to be redeemed. Testimonials are from nobodies. All of it sounds like sales outfits for beach condominium scams that by now most of us are wise to.
As a myeloma patient and a skeptical physician, I started nosing around stem cell clinic scams after my sister kept sending me clippings of full-page advertisements from her regional big city of millions newspaper regaling a stem cell sales outfit. This happened shortly after I underwent my own stem cell transplant. She did it as a joke since her idea was I would have save “bags of money” had I gone to one of these outfits and not to a university medical center cancer stem cell transplant center. I had unwittingly set this off in her when I began to read my medical charges to her in mock horror for the treatment when I received my bills.
I started searching on the Internet the phenomenon of free-standing stem cell clinics for fun and personal interest. The more I looked, the more intrigued I became. I noticed the ads and websites usually did not specify what kind of ‘stuff’ was injected into you. Stem cell harvesting with exotic machines that separated the specific cells from bone marrow and blood did not seem to be performed. That one little mystery started me to poking around in my prankish, sneaking around, teenager mode. I finally found some Net based sites that referred to actual injections of some kinds of solutions. I started writing and calling various of these clinics and operations. Some of them would not talk on the phone and were sharp enough to detect that I was not your actual dumb rube sucker future patient. I began to drop my ordinary educated speech and vocabulary like a hot rock. I have long been a little bit of an accent mimic since I have lived in a number of places with different accents that I have liked such as South Africa etc. So I found that if I spoke in a melange of southeastern Texas good old boy, I got good results and information.
The clinic salespeople and that is the only way I can describe them, would work hard to reel me in. “Questions of commitment,” as they are called in sales circles, came at almost predictable intervals. These would be preceded by pseudoscientific double talks that always sounded good. This double talk though sometimes would betray what was actually done. If I acted naive and gullible enough, with no educational reservoir to measure their claims against, the reps would reveal to me what was being given, confident that I would think it was great and not be able to dispute its worth.
I began to learn that solutions typically involved solutions of serum. Blood products if actually used were typed and crossed to make sure transfusion reactions did not occur. I never asked how they had the ability to do this, certified personnel etc., as I feared this would tip them off that I was smarter than I let on. But nonetheless, it was a common trait I encountered in some of the outfits. They had some legitimate capabilities to support their scams, causing me to wonder, how do the certified techs do this honestly, are they in on it too? And then I would conclude skeptically, yeah they likely are you, naive idiot.
Some outfits representations as to the contents of their formulas were like Gerovital’s old concoctions rumored in the ’60’s, secret ingredients, hormones and such. One factor that I found odd was the reference to harvested placental blood and placental products. That really threw me. I had many questions and reactions:
- are placental blood products actually available for sale through biological products clearinghouses or in some vast illicit underground market along with illegal body parts and organs?/
- what would the anti-abortion advocates think of all this?
- was this part of what the anti-stem cell therapy research crowd feared during the Bush administration era?
- if placental blood products were for sale somehow, are they cheap or costly?
- are such screened for HIV, etc.?
- what kinds of risks are there?
One thing that was universal is none of these clinics would send anything by mail. Not even consents, outlines of procedures, consents or anything. The only thing they were willing to commit to was giving me an appointment by phone. Costs could not usually be discussed by phone. I got the idea that it was again one of the “if you have to ask, you can’t afford it” kind of situation.
One of the few clinics that offered more information was that of the Tampa Lung Institute in Tampa FL. This clinic was written up in the Tampa Bay Times in 2015 in the article, “Tampa stem cell clinic is long on promises, not evidence.”
This clinic actually had a physician director and practitioner listed by name. It also listed costs and gave fairly open information as to the sources of the blood product infused being from fat tissue cells, ostensibly real autologous stem cells from the patient’s own sources [which is what ‘autologous’ means]. The claims were seemingly specific, helping chronic lung disease. How this treatment would help Chronic Lung Disease was beyond me. But claims were anecdotal, meaning derived from single patient testimonials, not large, replicated studies as is the case for all such medical scams. And it was somewhat suspect in my mind that the physician director was 85 years old at the time of this 2015 write-up.
I found all this quite disturbing. I found myself quickly thinking that vulnerable persons could be actually harmed by such ineffective treatments if used for “dread” diseases such as cancers. My only comfort was that none of these clinics advertised themselves as treating cancers and such, but trumpeted instead “relief” of all the usual nonspecific maladies of fatigue, neuropathy, and pains of various joints.
Still, I thought in my liberal make the world a better place mode, that “something oughta be done about this.” And thankfully, there is.
The FDA has been monitoring and tracking this stuff for years since these scams started appearing about 10 years ago. One of the earliest references to legitimate warnings I saw was in 2008 at a site of the journal New Scientist. This site noted the increasing concern on the part of the International Society for Stem Cell Research about fake clinics and therapies.
A more recent FDA 2017 notice details information about such fake clinics in the bulletin, “FDA Warns About Stem Cell Therapies.” FDA policing and ‘cracking down’ on these sites has been in motion for several years now. In the last several months while out on several months’ medical leave time, and time to burn…., I have called several of the clinics again that I contacted in 2012. I found that all but one of them are GONE. Poof. I take that as a good development. Since none of them had names of their owners or practitioners in the days I called them initially [I saved all their information, websites etc., on my trusty hard drives and cloud drive sites], I could not contact anyone. I can only hope they have been run out of business, are in prison etc. But likely these enterprised characters have moved onto telemarketing or other fast buck scams.
For the reader’s interest and possibly needed reassurance, the FDA has indeed muscled up in its enforcement efforts with regard to bogus stem cell operations. One of the first public acknowledgments of this effort in the medical media nationally that I found was the article, “FDA moves to crack down on unproven stem cell therapies,” that makes for a very good catch up on this issue.
Lastly, I cannot leave this topic without a personal patient role note. I have shared this stuff with my own oncologist from time to time. When I first did so, I was heartened to hear that he was appalled and scoffed heartily. I have repeated my tidbits to him on this and he has echoed that the national guild for hematologist and oncologists has increasingly taken note of this quiet outrage as I call it. I still recall how flabbergasted he was when I handed him the actual full page stem clinic ad from my sister’s metropolitan newspaper. His reaction back then was basically along the lines of “I had no idea that…”