Who decides whether a stem cell therapy is “good” or “bad”, and should that kind of a judgment be more focused on direct patient perspectives such as their stem cell therapy reviews as consumers or based on biomedical science? Both?
I’ve written before about how stem cell patients are increasingly thinking of themselves as consumers and posting stem cell therapy reviews online including on more general consumer review sites such as Yelp. As much as one can find many positive and some negative overall reviews on the web, I wonder how much these mean for stem cell offerings? Also, are stem cells worth the cost (see post here on stem cell therapy costs).
Many of us have come to put some significant weight on overall review averages (think 4.5 stars out of 5 for example) for products or services on sites like Amazon. Even if such reviews can be “gamed” at times to some extent, if there are hundreds of different reviews I figure the mean review score is probably reasonably accurate, right? But what about reviews for something as narrowly focused and health-oriented as stem cell offerings? Below, I’ve taken a look at some of what’s out there in terms of stem cell therapy reviews. Note that I don’t consider star reviews on Facebook to count as a review.
Knees. If you just search on the web for “stem cells knees reviews” in addition to various websites like here on The Niche that are informational and provide opinions, there are some for-profit clinics that pop up with reviews per Google’s top search results. The mean reviews are generally positive (above 4 stars out of 5), but who is doing the reviewing there?
I also wondered: where does that Google star metric come from? It seems to come from something I had never heard of called “Trustpilot”. How good is Trustpilot? It’s really hard to say. There are some news articles from a few years back suggesting the company was struggling with fake reviews, but not sure about now. If you turn the tables on Trustpilot and Google it, it gets mixed star reviews from other websites. The medical literature on stem cells for knees if taken as a review of a sort suggests it’s not ready for prime time and shouldn’t be sold for profit.
Lungs. A search for reviews of places offering stem cells for lung or pulmonary issues didn’t pop up any reviews. Looking directly for reviews of one of the more high-profile clinic firms selling stem cells in this area, the Lung Institute, didn’t find much concrete either in terms of a summary of many reviews from which one could take an average. Just a few individual reviews mostly that were mixed in terms of positive and negative perspectives. I thought maybe I should look on the Better Business Bureau website. There was one complaint I found there. I did a few quick searches more generally for “stem cells” on the Better Business Bureau website in major metro areas across the U.S. and found basically no reviews so not helpful. This could change.
Autism. I’ve been writing about stem cells for autism for years and I’m skeptical of both the for-profit and traditional clinical trials going on. There are no consumer reviews popping up in a basic search here either, even though I know there is huge interest out there from parents and others.
What about stem cell brands?
Regenexx. One of the more prominent stem cell brands is Regenexx, which markets unmodified (minimal manipulation) bone marrow stem cells for a variety of orthopedic conditions (apparently, homologous use). Regenexx in the U.S. appears FDA compliant, but I have some doubts about its efficacy. Also, safety isn’t absolutely crystal clear yet even if it seems generally pretty free from cell-related serious adverse events (e.g. see here). What do consumers seem to think? I don’t know what it means, but Regenexx has a ton of reviews out there and they seem generally very positive (via Trustpilot), where this brand has more than 500 reviews and a good average. Skimming the reviews they don’t jump out at you as fake (e.g. they aren’t repetitive).
Overall, it is going to be hard for consumers to make educated decisions about stem cells based on online stem cell therapy reviews and they also often have a tough time navigating through dense scientific research articles in journals full of jargon. This situation makes it all the more important for stem cell researchers to reach out with thoughtful perspectives.
Well, it eems like even a more basic analysis by a prospective patient is possible- just take a look at your potential clinic’s social media- do they publish, are the doctors certified and even more basic, is the grammar and presentation such that it reflects the practice in a positive light. Before all the comments about ” grammar police” I’d just want a prospective patient to consider – if they can’t get the grammar right across multiple sites , articles, blogs, is there a chance this would be representative of the potential care and/or results.? I know it’s only grammar, but it’s also only your health!
I agree! Typos and grammar errors make me extremely suspicious.
Centeno’s Marketing Manager has given him a 5-star rating on his personal Google Review profile.
do you also do stem cell on the shoulders/
Step one: review the process of Google reviews. The “owner” of a Google site can delete any reviews they wish. That skews the ratings in their favor.
Why would Google allow that?
Not sure if that is changing with this onboarding or not:
https://regenexxcorporate.com/
https://www.regenexx.com/regenexx-partners-with-access-healthnet/
https://www.regenexx.com/regenexx-pulse-healthcare-announce-partnership-reduce-orthopedic-surgery-rates/
My understanding was that insurance at best only covers a small amount of the total Regenexx cost:
https://www.healthlinkcenter.com/costs-and-insurance/ “Insurance only covers office visits, consultations, diagnostic testing, examinations and bracing. Regenexx stem cell and blood platelet procedures are not covered by any insurance carriers including Medicare. “
The less complicated your injury, the more likely any clinic, such as Regenexx, can help you. But I went to the Regenexx Broomfield clinic several times (several joint problems) and it was far from perfect. The treatments kept changing with each trip I had (nothing consistent), there was no follow up advice (what to do after treatment), one of my trips was literally not documented, and the prices have gone up by about 300% in the past 8 years, which is a tell tale sign of their main priority.
And there are patterns on their Google Reviews with 20 or so people all suddenly giving 5 star reviews in the same week, when no one had commented for months prior. I think it is a part of their gimic now – “rate us for a discount next time”!
I don’t question their injection techniques and they certainly know far more than a lot of clinics as far as pain patterns go (Canadian doctors are pure amateurs as far as pain patterns go).
However, with such extensive growth of their company, I believe they have lost sight of their clients – actual pain patients, and have no issue robbing them of their retirement savings.
The last time I was there (2014), they charged $500 per joint for injections (on top of the consult fee, lab fees, bone marrow aspiration procedure cost or prp cost). The last I heard (2016) it was up to $1500 per joint for injections on top of everything else (stem cells, prp, etc). Stem cells are over $7000 USD there (they were once just $3500 USD). In Canada, they just charge you for the solution (stem cells or prp), and inject you until it is all gone. Usually about $300-$700 Cdn dollars for prp and about $5000 Cdn dollars on average for bone marrow stem cells. And they’ll do both knees or hips for that amount (ex: $5000 Cdn for stem cells in both hips). Regenexx would charge over $7000 USD for EACH hip. Considering that the Canadian clinics too are making a profit, Regenexx prices are out to lunch. Can you spell GREED?
As well, as much as a lot of people on Trust Pilot had good success with their hips and/or knees for 8-12 months, many say the pain returned thereafter. Paying $10,000 USD per year for the rest of your life for temporary relief isn’t good enough. No one can continue to pay this amount for the long term.
And the Regenexx Cayman clinic is only for the rich. Even a hotel room there is over $1000 USD per night. Never mind the procedure ($25,000 USD).
With several insurance companies recently covering Regenexx, their multimillionaire status may soon make them billionaires.
However, their marketing approach has made several in their profession lose respect for them as much as others have gained their respects.
Canada has yet to get a Regenexx clinic and from the doctors I have spoken to here, Regenexx are thought of as marketing experts, but otherwise nothing more spectacular than other regenerative doctors. We have a different attitude towards medicine and helping to heal people (money is not the priority and doctors all get paid nicely as it is). I can’t help but feel that if a Canadian doctor joins Regenexx, their colleagues in Canada will lose total respect for them and question their motives/values $$$$
Hi there,
Where is Canada did you get your PRP and stem cell treatment? I come from Toronto and I’ve been looking into this as a possible alternative treatment to knee replacement down the road. I currently reside in Toronto. I know there are places that offer PRP but I’ve never seen any that offer stem cell therapy.
I’d appreciate if you could take a few minutes and respond.
Many thx.
Websites like healthgrades.com, yelp.com, google.com, vitals.com, zocdoc.com, etc. all encourage patients to rate doctors and if they just had a pizza or a burger. Some may be helpful….but really hard for a patient to understand if they got good medical advice or care if they are only basing it on waiting time or even on outcome. Sites like Yelp don’t even vett the reviews to see if they were from real visits…..and fake reviews are not removed (personal experience with this) so I always caution patients to treat the reviews like a data point that may or may not be accurate. I the problem with reviews correlating to medical and surgical proficiency is far far far worse in regenerative medicine given the nature of the chronic diseases being treated and the fact that it is cash pay.
I have been fighting a local “Stem Cell Therapy” clinic here in Illinois…they are total snake oil peddlers! Old people are lined up for “stem cell” injections at $5,000 each. “Find out if it will work for you!” “It may take six to eight injections before you see results!” Not FDA approved, not covered by insurance…when I asked, “Why hasn’t this been approved by the FDA?” the “doctor” (chiropractor) said, “The FDA is stupid!”
The injections are “pluripotent stem cells taken from placentas of donor mothers in Mexico, in a matrix with growth factors”. ha ha
I had to dig deep to find the address of the ABC…it’s a post office box inside a USP store.
Editor’s Note: comment edited to include “ABC” instead of name of the firm.
@Paul
“The medical literature on stem cells for knees if taken as a review of a sort suggests it’s not ready for prime time and shouldn’t be sold for profit.”
Could you please tell where we can find these reviews?
Hi Richie,
I wasn’t thinking of specific review articles, but rather meaning “review” in a “big picture” kind of sense thinking of the current literature in a meta sense. Collectively there isn’t a strong case that this approach is truly effective. Paul
The patient is usually looking for a treatment for a very specific condition. Then, for a specific treatment of a specific condition the specific questions are (1) Safety, (2) Efficacy, (3) Cost, and (4) medical expertise and honesty of provider(s).
For many specific conditions there are no surefire options, so it’s a very difficult balancing game.
It would be useful to compare a specific treatment by one of the providers with another treatment option by another provider. For example: surgical removal of a meniscus (the go to choice of surgeons for many decades) with a Regenexx injection of platelet lysate and autologous stem cells derived from your own bone marrow. Use Pubmed to search the literature, and arrive at your own conclusion…
For myself, the Canadian Health care system had nothing useful to offer me with regards to a long-standing rotator cuff problem. A Regenexx platelet lysate injection didn’t cure me totally, but it got me over the hump and from there I have been able to exercise the problem down to nothing-burger status.
Regenexx has the best medical doctors I’ve ever come across when it comes to thorough analysis and thoughtful diagnostics — and helpful advice quite apart from stem cells. They don’t have a cure for all things orthopedic and they have been quite open about that to me. I was treated by them in the early days, when we were all taking a bit of a punt…
Hi Brian,
Like yourself I am a Canadian in search of other medical alternatives to sustained sports injuries over the years. The thought of knee replacement surgery is frightening as I am not that old.
? to hear your thought. Am thinking about going to Chicago for an assessment.
Paul, You need to separate grain from the chaff. While I totally agree with you that scam stem cell clinics are proliferating all over US, there are legitimate stem cell clinics which are preventing surgery and helping patients in the musculoskeletal arena. Regenexx is one of them. I am not part of them and I dont have any conflict of interest. I am a clinician who like Regenexx performs only spine and joint procedures and making a difference in patients’ lives. Painting “all” stem cell clinics in negative light is an intellectual failure on your part. Dont forget you are driving patients towards surgery [which always doesnt help and sometimes makes pain worse] by trashing legitimate stem cell clinics.
@sairam,
I see your point that there can be important differences between individual “stem cell clinics”. However, they generally share some things that in my opinion make it wise to view them skeptically. None offer FDA-approved stem cells. Teasing that apart, some don’t need FDA approval while others do and a few fall into gray zones, but absent FDA approval and without data from sufficiently-powered & completed RCT, what is being offered is “unproven”. What we call “stem cell clinics” also (with a few notable exceptions like Regenexx) don’t publish their data in at a minimum fairly solid journals that really do good peer review. The point of all the clinics is to make profits too, which gives those running them inherent conflicts of interest if they claim their offerings are research.
But again, there are differences too in that some clinics have more egregious practices such as doing things that don’t even make any remote common sense, hiding or downplaying adverse events, letting people who aren’t physicians do stem cell transplants, even when physicians do stem cell transplants they are operating outside their area of expertise and training, etc.
What to call “stem cell clinics” is complicated.
I discussed these kinds of issues further a few months ago: https://ipscell.com/2018/03/what-should-we-call-stem-cell-clinics-is-snake-oil-too-harsh-for-some/
I would ask you what you believe are the specific key attributes that in your view make a stem cell clinic “legitimate” or to use your language “wheat” rather than chaff?
There are no FDA “approved” stem cells. There is not a FDA “approved” process or category and that is one of the very confusing things to patients when seeing terms like “FDA approved” on a clinic web site. For stem cells, FDA has regulations in place that ultimately boil down to whether or not a product meets section 361 or 351 criteria. If a clinician is using or making a product that is deemed a biologic drug by the FDA regulations then that clinician/clinic should have an New Drug Application and Biologic Licence Application approved by the FDA BEFORE treating patients. With recent laws well documented there are newer alternative pathways like getting a RMAT, The problem is that none of the clinics/clinicians using biologics that require further FDA oversight are actually following “the rules”….instead daring the FDA and Justice Dept. to enforce the regs. For Cell Surgical and US Stem Cell that has finally started to happen.
I know this is an old article but there are so few people publicly talking about this subject criticality..
I’m desperate due to growing hip, abdominal and lumbar back pain. Ortho docs can’t seem to diagnose me. Neither can Gastro, urologist, or pcp. I’ve had a CT scan, mri of thoracic spine, 2 rounds of epidural shots in lumbar spine. 12 weeks of PT. 3 months of chiropractic care. Acupuncture. I have $200 new tennis shoes, fancy inserts for other shoes, fancy slippers for the house. I have tried varieties of back pads, back braces and posture trainers. I’ve done an anti-inflammatory diet. Splitting my time between a sitting desk, a chair and a yoga ball. Ive had x-rays, ultrasounds, tried antispasmodics, had a colonoscopy, done the whole30 Diet, done the keto diet, lost 60lbs. Been advised to get inguinal hernia surgery/mesh, and a sports medicine doc has me on round 2 of PT. And I’m worse today than when I started.
I’m on a biologic called Tremfya which I have recently ceased – for psoriasis and psoriatic arthritis. I’ve been on this a little bit longer than I’ve had the back pain.
Here’s my question to you. Biologics are FDA approved.
So they’ve done clinical trials to know this isn’t going to kill people when it hits the market. But right in the literature for the medicine they state flat out – they do not know why these drugs work. FDA approved, doctor prescribed.
Secondly – drugs like Humera have been on the market longer and it was found that some people, over the long term, build antibodies to this drug. They’re learning about these drugs far far after FDA approval and prescribed en masse.
So it’s obvious the FDA approval isn’t a guarantee of safety.
We are all well aware of drugs that get fast tracked by the FDA and other problems over the years at that body falling to regulatory capture by industry.
Look, I don’t want to believe in chaos and anarchy. And I’d like to believe “in the process”.
But I have a hard time bowing to them as a final authority.
If you were in my shoes – depressed, anxious, diminished as a husband and father, in a world that treats pain patients like drug addicts not deserving of any kind of relief, not living in a medical or recreational marijuana state, condition worsening, unable to get opiods bc of all the peeps that abused prescriptions, bought street drugs, and killed themselves.
How would you skeptically look at Regenexx?
People I see as skeptical generally place an almost…. faith in scientific journals regardless of reproducibility problems. They ignore business interests and cultural cloisters in academia and how they influence work (see the Grievance Studies affair) and put a whole lot of stock in a logical fallacy (appeal to authority) in regards to regulatory bodies who have long lost their trust.
Almost as if religious, they fall back to non-existant pillars that are far more movable and flexible than given credit for.
So as a patient, how do you weigh that.?