A large and growing number of American clinics are selling stem cells to patients for a variety of ills and one in the San Diego area called StemGenex was the main focus of a recent LA Times piece by columnist Michael Hiltzik. In the piece called “These new stem cell treatments are expensive — and unproven” Hiltzik discussed the growing issues over stem cell clinics in the U.S. and he used StemGenex as a kind of test case or example.
He started off with a description of the kind of hopeful feeling that many patients experience upon visiting stem cell clinic websites:
“Visitors to the website of StemGenex, a La Jolla medical group, could be forgiven for thinking that the answer to their prayers is finally at hand.”
However, there is little published data to support the expectation that one’s prayers might be answered at U.S. stem cell clinics today. I talked with Hiltzik about the state of the American stem cell clinic arena and my concerns as he was researching his piece. The marketing of stem cells is too aspirational in my view and patients are sold medical interventions in many cases that may not work and have potential risks. Hiltzik writes (emphasis mine):
“StemGenex’s director of media and community relations, Jamie Schubert, told me that its “principal purpose is helping people with unmet clinical needs achieve optimum health and better quality of life,” and that it has “anecdotal feedback … from our patients that their symptoms have dramatically improved and their quality of life has substantially increased.”
Keep in mind that we are talking about hundreds of clinics in the U.S. injecting living stem cells into patients’ bloodstreams or into specific tissues and most clinics out there do not have FDA approval to do this so anecdotes are not a strong foundation for this kind of practice in my opinion.
Some argue they don’t need FDA approval, but regardless there should be rigorous data to support such medical interventions to at least lower risks and increase the odds of benefits. Instead in most cases for clinics across the U.S. there are mostly vague impressions and feelings from the clinics that what they are doing might be helpful and isn’t harmful.
Hiltzik also discusses some FDA issues as they relate to stem cell clinics and recounts the case of the Irvine Stem Cell Treatment Center run by Dr. Thomas Gionis as well as two other co-owned clinics that together received a warning letter last December.
Then the article focuses again on StemGenex including his reporting on the clinic’s claim of accreditation:
“StemGenex claimed on its website to be accredited by the Accreditation Assn. for Ambulatory Health Care, which provides seals of approval for outpatient surgical facilities. It’s not. StemGenex removed the references to the AAAHC from its website after we asked about them; the AAAHC also issued a cease-and-desist letter. StemGenex says the references were “outdated.”
So could clinics like StemGenex help people and what about some patients sometimes transiently feeling better after getting “treatments”?
I’m skeptical.
In part brief periods of feeling better could be a placebo effect at work. We need solid data from controlled studies to be sure. Hiltzik recounts the case of a customer Vivian Sjodin who has paid almost $30,000 for treatments at StemGenex, but whose possible perceived benefits he says reportedly faded over a period of months.
This not only raises the issue of the high cost of stem cell treatments at clinics, but also the fact that many businesses want their customers to keep coming back for additional stem cell purchases.
In the lead up to the September FDA stem cell meeting we can expect to see more attention by the media on stem cell clinics and that’ll be a good thing in terms of educating us all about what is going on in that industry. Note that Stemgenex and other stem cell clinics are amongst the many speakers on the agenda. Let’s see what everyone has to say.
My Partner of 11 years has Parkinson’s coupled with Lewys Body syndrome.
We are both in our early 80s, but I, fortunately, am very healthy and on a good day reckon that I am really 65, but on a bad day 66 !
We are considering the possibility of accepting a StemGenex treatment, in the pious hope that it might make her life more bearable, even if it does not cure the problem.
I would like to hear, as soon as possible, from anyone regarding their first hand experience (particularly from anyone who has had treatment by StemGenex in similar circumstances) in order to assist us in making a reasoned decision as to whether or not to proceed with this course of action.
HELP please !!!
https://blog.cirm.ca.gov/2015/06/04/desperate-patients-and-false-hope-a-troubling-trend-for-stem-cell-based-therapies/
http://www.10news.com/news/investigations/team-10-clinics-offering-bogus-stem-cell-treatments#Clinics%20offer%20%2415%2C000%20Parkinson%27s%20treatment
http://www.10news.com/news/team-10/team-10-clinics-offering-bogus-stem-cell-treatments
There are some pretty wild claims here about stem cells helping people. Those who make such comments should back them up with data, links, etc. in my view or otherwise they don’t carry much weight.
The only unsubstantiated wild claims are those found in the article. Perhaps the standard you want to apply to the bloggers should have been applied to your author. Pay the journal database fees and do the research pre-publication. It’s preposterous to assert readers should do the work the author should have done prior to publication. What your asking for is in the literature.
So then Mr Cole why do you continue to comment.
Disclosure, I aka former USAF honor guard commander and special oops solider. I do not subscribe to conspiracy theories but “in my opinion” what’s going on in western medicine is beyond a conspiracy it’s sinister. The fact is big pharma makes its money when one buys synthetic drugs following a prescription as dictated in the physicians desk reference drafted by who? https://en.m.wikipedia.org/wiki/Physicians%27_Desk_Reference
Treatment using adult stem cells as a treatment modality does not lead to reliance on synthetic drugs to mask symptoms. In my opinion the answer is quite simple and I suspect you know the answer which in my opinion is simply money and greed.
This article is about as useful as boobs on a pig in evaluating utilization of stem cells as a treatment modality. In fact, there are 40 years worth of stem cell research in animals and plenty of clinical data on stem cell treatments in humans. I’ve seen MI go from 25 to to normal following stem cell treatment. The key is to be careful who you get the treatment from and follow their history in stem cell treatment modality development through their publications. It’s not FDA regulates because it’s minimally invasive if isolated from a blood draw and the stem cells returned to the blood stream following activation. It’s preposterous this article suggests otherwise and its author clearly did very little research and perhaps we should ask the author If he is a paid shill of big pharma? This thpe of authorship is reckless and irresponsible. Do your own research people don’t listen to anyone, not even me. The research studies are out there to document one can proliferate totipotent (not pluripotent where most clinics focus) stem cells in vivo that can be coaxed into the vascular system and for the chronically ill isolated through a 400ml blood draw and reintroduced to the blood stream. The miraculous thing is the human body intuitively knows where to send the stem cells (I.E. Most critical needed area for survival). It’s all well documented and plenty of disorders have been treated. In my opinion one should Search the literature before vomiting trash journalism like this ridiculous article.
Charles Cole since you have apparently done so much research why are you not willing to share these links so the rest of us can get as educated as you on the subject. Otherwise I feel you should bow out of this discussion.
There seems to be an ever increasing gap between what real life patient are experiencing and many in academia are reporting on. I don’t know the Stemgenex group, but the continual effort to discredit ALL clinics treating with stem cell here and abroad is overreaching. Is it just me, or does this seem like a “disinformation campaign?”
“Contrary to the blinkered portrayal of stem cells in the article, there are in fact almost 3,500 ongoing or completed clinical trials using adult stem cells, listed in the NIH/FDA-approved database. Moreover, large numbers of patients have been treated with adult stem cells. In 2012 there were almost 70,000 patients treated around the globe in that year alone, and almost 20,000 patients treated in just the U.S. in 2014. Cumulatively, it’s been documented that as of December 2012, there had already been over one million adult stem cell transplants. This means that now, over 1.5 million patients have had their lives saved and health improved by adult stem cell transplants.”
http://dailycaller.com/2016/08/22/adult-stem-cells-the-best-kept-secret-in-medicine/
Why would this disinformation campaign be happening?
http://www.regenexx.com/research-industrial-complex-wastes-big-money/
Great post! There is clearly a campaign of disinformation. Disclosure: I am a former usaf honor guard commander and do not subscribe to conspiracy theories. However, what goes on in western medicine is beyond conspiracy it’s sinister. We all hear “big pharma” referred to as the boggy man. It’s the power they wield in lobbying activities. Why is their a campaign of disinformation? Curing patients using adult stem cells does not foster long term reliance on synthetic drugs. So your answer I suspect you knew is simple, money and greed.
Jennifer the moderator keeps deleting my reply to your post, excellent post and it’s obvious what’s going on here….
@Charles,
Haven’t you heard of comments requiring moderation? No deletion, just comment moderation, which can take a few hours if I’m busy doing other stuff.
Paul
“This means that now, over 1.5 million patients have had their lives saved and health improved by adult stem cell transplants” Jennifer, have you seen any peer-reviewed, controlled clinical data to support any of these improvements or is it all patient anecdotes? Just asking.
Is there any point in spending money on stem cell treatments at the present time? This blog says to “be cautious”, but that hardly seems strong enough, seeing that there is no solid evidence of any benefit. If medical data accumulated from the clinics’ treatments could be used to further knowledge of stem cells, that at least would be something. Maybe a law could be passed forcing them to compile follow-up data on their patients.
The data is out there and it’s published in medical journals. Don’t draw definitive conclusions from an article like the one posted here, it’s riddled with opinion and inuendo. Do some research, stem cell treatment modalities utilizing the right type of stem cells administered by those with 30-40 years of publications I medical journals know what they are doing and talking about, don’t believe what you’ve read here, it’s absolutely useless in my opinion based on the patients if seen treated with Parkinson’s, Alzheimer’s, diabetes, Polytrauma, ALS etc that no longer exhibit the effects of those diseases following stem cell treatment.
No one cares if you’re a USAF honor guard commander. Appeal to authority fallacy. Why don’t you show us the evidence of your patients with ALS that no longer exhibit disease phenotypes after stem cell treatments instead?
I’m not your research assistant, do your own research, there’s plenty of publications to dispel the physcho babble of paid shills such as this ridiculous useless article.
As for service, be grateful there are those willing to serve to preserve the freedom to post imbecilic nonsense on the web.
And military service isn’t the issue here, irresponsible reckless journalism is the focus. Stay on task….
I’ll leave this here for you, Charles. https://en.wikipedia.org/wiki/Philosophic_burden_of_proof. I’ll be waiting for the evidence!
You’re a hoot! The burden of proof is on the author of this article, not those pointing out the fact it’s grossly inaccurate. Pay your own journal fees, do your own research, it that had been done prior to posting this garbage we wouldn’t be having this dialog. Ponder that while you wait on others to do your work.