American stem cell clinics put thousands of patients at risk each year through hawking expensive, unproven and unapproved medical interventions, and now Dr. Oz is reportedly taking them on in a new show set to air tomorrow. 
Those running the clinics have affixed the buzz phrase “stem cells” onto a whole range of stuff ranging from A (actual stem cells, but unproven) to Z (zombie cells; aka not really living cells of the stem cell variety.)
While at times in the past the Dr. Oz Show has been criticized for how it discussed unproven health interventions, from what I can tell on the stem cell front now, they are very serious about exposing how risky the stem cell clinic industry has become.
A clip of the Dr. Oz show I was able to see in last week was striking. Another clip above from the show of Montel Williams is quite intense.
I was able to get this quote from Dr. Oz himself about this situation and the show:
“These stem cell clinics are using the potential of legitimate research to take advantage of patients desperate for help. These physicians are violating not only the trust of their patients but also the law and hopefully our show will push the FDA to use its authority to shut them down.”
I’ve set my DVR to record it. If you have any interest at all in stem cells as a patient, scientist, physician, student, grant funder, science writer, FDA person, FTC person, etc., you should check this out.
Dr. Sally Temple, President of ISSCR, is also on the show. I’m told that the stem cell clinic segment will be the second half of the show.
I would like you all to know that I had HSCT a year ago and that it worked! All stem cell therapies are not bogus. HSCT saved my life.
This show should have distinguished the difference between bogus stem cell therapies and the sucessful hsct. Hsct is even available on the nhs for some ms patients! This programe was utter sensationL garbage. Hsct is the ONLY successful treatment for ms and this show will undermine all the work people with ms have been doing fighting to get this stem cell trsndplant more widely available. He should be forced back on to the show with people who have had hsct successfully and make a full apology
While HSCT has some good results, it has also led to deaths due the harsh immunoablation procedures. But neither the National Institute for Health and Care Excellence (NICE) in UK nor the FDA in US have approved HSCT and the NHS does not have any approval to use it routinely to treat any form of MS.
The therapy is still EXPERIMENTAL, just like some of the therapies discussed on the show. Be careful who you call “bogus or successful” until you have all the facts.
Just so everyone understands- there is a logic behind hematopoietic stem cell replacement (bone marrow transplant) for diseases like MS. The patient’s own immune system is responsible for the illness, and removing the immune system and replacing it makes sense. BUT…destroying one’s own immune system is dangerous and is too often deadly. That’s why HSCT is only approved for cancer treatment, when nothing else has worked.
It’s important to understand that there is no logic behind adipose and mesenchymal stem cell treatments. They aren’t being used to replace immune system cells or any other cells. They may locally deliver anti-inflammatory factors, a property that should be examined for orthopedic uses…with unbiased FDA clinical trials.
Since the FDA overreached to take control of autologous stem cells, everyone in the research community assumes it should be controlled by FDA clinical protocols and not medical protocols. Everyone is missing this point in the argument when autologous stem cells should be a medical procedure. I can take the same exact arguments from any venturesome medical procedure and apply it as they have evolved from the beginning with the same difficulties and failures for example open heart surgery. I keep hearing the argument that researchers and academia should take sole possession with the assumption that our own stem cells as so called manipulated with growth factors are the same as chemical drug. It really is the FDA’s fault if a few clinics behave unethical, because the FDA with its lack of resources is in uncharted territory overlooking thousands of medical doctors and clinics in a field that should be regulated by medical state boards, so this vacuum with doctors and clinics with no oversight can only be blamed by the FDA’s overreached. This is what all of you are missing. I am hoping with the new presidential administration the FDA steps aside when it comes with adult stem cells. I think it will happen.
As a patient group http://www.patientsforstemcells.org/home/ and as a 3x adult stem cell patient myself, we’ve repeatedly reached out to Montel and the Dr. Oz show and gotten a, “talk to the hand,” “crickets chirping,” response. Montel’s emotional plea to produce even, “one patient who’s had successful treatment,” and he’d jump up and down, was underhanded personal drama at best. If he really wanted to hear a patients perspective, he would have reached out by now. #StartJumpingMontel is a Twitter campaign we started to publicly share some amazing success stories with the suddenly mute MS celebrity and his equally tongue-tied Dr. Oz.
http://www.stemcellpioneers.com/showthread.php?11451-Dr-Oz-goes-to-the-dark-side
Yes, he was a bit of a drama queen, but are your “amazing success stories” any better? He actually said, show me one person that can PROVE that they are better – and that’s what scientists and clinicians want to see. Although patient perspectives on quality of life are very important, they are mostly not clinical proof that a therapy works for the majority of patients. This becomes damaging for patients who take your word and then pay thousands only to find out it didn’t work for them.
@admin Do you think that Montel’s medical marijuana company should conduct placebo-controlled clinical trials and get FDA approval before marketing their drug(s) as a treatment for neuropathic pain caused by MS?
PAUL- I read with interest your response to an ‘unbalanced and promotional’ article last year at about this time… and find it ironic that you are generally guilty of the same… your posts rarely present a balanced and objective perspective. It would be laughable that we are even discussing Montel’s opinions on stem cells if it weren’t so depressing. Perhaps you could get Kim Kardashian to weigh in next week?
That said, in general, I agree with you… many clinics are aggressively promoting therapies that have limited efficacy at best (try calling US Stem Cell and tell them your child has C-P… the response is scary and shocking). We should, however, all be reminded that the safety profile for stem cell therapies is overwhelmingly positive. The focus, therefore should perhaps be:
1. Focus on therapeutic targets where there are no good alternatives with the standard of care.
2. Implementing basic quality controls in these clinics to minimize the risk of contamination
3. Implementing an objective informed consent process that has a balanced description of risk:benefit
4. Encourage strategies to collect and report data so that we can take these treatment strategies from the realm of ‘encouraging’ and push them into the realm of ‘working’
You put an amazing amount of time and effort into blogging/commenting on these topics…I would encourage you to use your platform to develop actionable plans that could achieve the objectives outlined above. Shrilly ringing the bell or hoping that the FDA will somehow enable widespread access seems unlikely to improve the situation for patients… and that should be the common motivation uniting the Field.
Todd,
Let’s add to that focus list: “Quality control for the transplanted stem cell preparations, including their stem cell-specific dose.”
Regards,
James at Asymmetrex
Totally agree… that was intended in point #2 above
Cyndi- I’m glad that you got a good result. But that’s not the point. Wouldn’t you have rather had an FDA-approved therapy that had been shown to be safe and proven to work? I just saw the show, and I liked the example of having your dentist set your broken ankle- she might get lucky and do a good job, but would your dentist be your first choice for fixing a broken bone?
If these clinics have something that works, they should ask the FDA to approve it. Why not?
“I’m glad you got a good result but that’s not the point.” Really? That’s exactly the point. If getting better is not the point, then what is it exactly? Does their result not count? I’d imagine they’d prefer something that helped them, regardless of what the FDA says. Yes, a dentist should not be treating rheumatoid arthritis patients, or any other non-dental patient with any kind of “stem cells” if that’s even what they are doing. That does not mean that MSCs don’t help the symptoms of RA.
Also, are we discussing adipose cells, bone marrow cells, cord blood cells, cord blood tissue cells, or what?
Sorry, “Umbilical cord tissue cells” not “cord blood tissue cells”. Of course there are different types of ‘stem cells’ in cord blood, etc
.
My son used his own Stem Cells. Plz do homework on this very important subject.
This post was about RP but allogeneic MSCs are much better suited for autoimmune issues, as I assume you must understand.
Why not Jeanne? – because the public understands that an FDA seal of approval is not always the ideal anymore – look around you – in 2017 we have thousands of FDA approved products that prolong QT intervals leading to Torsades de pointes and potential sudden cardiac death; which have SAE black box warnings, including death; which are IARC classified class I or II carcinogens; not to mention 2 million ADE / yr in the U.S. including 100K fatalities, “turn their head” personal importation rules; more than frequent post marketing safety labeling changes; meanwhile a wide array of products that the FDA offers minimal to no human use oversight which generate hundreds of billions of dollars annually: dietary supplements, cosmetics, GRAS food ingredients (which never have to be tested in combination), tobacco, medical marijuana, pesticides and herbicides, medical foods, compounded drugs combinations – we are in a new era which everyone must get used to or the U.S. will fall so far behind the rest of the world it will never catch up
Hmmmm….would it be better if the FDA did NOT regulate drugs? That’s what the stem cell clinics are arguing: just trust us…(and pay us).
Dr. Burt in Chicago has treated 10,000+ successfully and is close to getting this FDA approved. But approved or not I could get 1,000 to comment on this of their success stories.
Where was that side of Dr Oz’s show? No where, because I guess he does not care about really helping ppl like my son.
My husband was diagnosed with Retinitis Pigmentosa six years ago. The doctors told him his only hope for saving his vision was stem cell therapy which was at least 8-10 years away. He was told to go home and apply for disability. He wasn’t ready to give up so easily. We turned to the internet and started researching stem cell treatments for RP. We found a clinic in Mexico that had been providing stem cell therapy successfully for more than 10 years.
Feeling he had nothing to lose we traveled to Mexico for the first of three treatments. Stem cells were taken from the bone marrow in his hip and injected around his eyes. There was a noticeable improvement in his vision in just a few weeks. He returned in 3 and 6 months for more treatments. His vision has improved to the point he has gotten his drivers license back and has returned to work.
His doctors were shocked and amazed at his improvement. Our family doctor and optometrist have both referred RP patients for the same treatment. To paint ALL stem cell clinics as bogus is highly inaccurate. The treatment DOES work. It is used in clinics around the world and for you to discourage people from taking steps necessary and available to improve their health is irresponsible of YOU!
Thank you for your story and so happy your husband is better. STEM CELL TREATMENT DOES WORK. Shame on OZ & MONTEL for a dishonest show, that could have helped 1,000′
“…another daytime TV show and mine were recently noted in a BMJ article for only having proof for half of what we shared with the audience. A similar figure is often used to approximate the amount of randomized clinical trial data underlying conversations in physician’s offices across America. This reflects that natural gap between what is proven in clinical trials and the needs of our patients.” – Dr. Oz
I understand reservations about Dr. Oz, who doesn’t have a strong track record with the truth. But I get calls every day- many stem cell researchers do- asking about the legitimacy of some clinic that has promised to cure an incurable disease. All the people hear is bragging by clinics who claim that they can cure anything for the right (large) price. I would welcome another voice- a public voice…assuming that the Oz message is one of warning to the desperate about charlatans who only wish to exploit them, not make them better.
I agree with Jeanne and although I haven’t seen the full show yet, from what I’ve seen and read, Dr. Oz has taken this very seriously and tackles it head on, which is impressive. Paul
I saw the show and it certainly doesn’t qualify as journalism, that’s for sure. They found a couple unscrupulous providers (after over a year of “investigating”) and attributed their actions to all doctors and clinics providing any kind of stem cell treatment. It’s no different that finding a unscrupulous stem cell researcher and claiming that all stem cell researchers are the same. “Hey, you just saw it right here, didn’t you?” …sure.
Oz didn’t bother having any knowledgeable guest on to present the other side of the issue – and there is another side.
Montel is certainly conflicted with his medical marijuana MS business and his PoNS device business.
Amen!
Uneducated info about Stem Cell HSCT …I’M SO UPSET BECAUSE DR OZ SHOW COULD HAVE HELPED MANY.
Yay! – the highly respected Dr. Oz coming to the rescue of the “legitimate” stem cell industry – please – face it Paul, your time is over – give it up – your “team” had their chance and blew billions of taxpayer and private $$ with nothing to show for it – most stem cell companies are going out of business or being acquired for death spiral market caps; CIRM is imploding; no meaningful clinical data after years of promise – sorry – you backed the wrong horse – the evolution of the industry is hence what you now see in front of you
Be careful what you wish for..
https://www.washingtonpost.com/news/morning-mix/wp/2014/12/19/half-of-dr-ozs-medical-advice-is-baseless-or-wrong-study-says/?utm_term=.af2dccb9943c
http://www.livescience.com/50576-dr-oz-miracle-claims.html
http://www.vox.com/2015/4/23/8485711/dr-oz-criticism
So now Dr. Oz is the champion of evidence-based medicine? What a joke!
What this industry desperately lacks is an unfettered knowledgeable voice whereby potential stem cell patients can talk things over. Unfettered meaning not fearful of speaking up, of lawsuits, job termination, links to companies etc Once patients receive unbiased quality info the charleton’s business will dry up.
The other thing that needs to happen is that the fda trials need to catch up to private enterprise. It’s excruciating how long it takes. More money for more trials.
@Clifford, thanks for your comment. It sounds like you can bring diverse perspectives. Paul
The problem with witch hunts is that most of the people who burn aren’t witches. The problem with television science is that it is entertainment first, and often inaccurate. If the Montel Williams bit is any indication of what Dr. Oz will air tomorrow, more harm will be done than good.
If the issue of the merit of private stem cell treatment clinics in the U.S. is to be addressed responsibly and with balance, then the physicians who maintain these clinics must be talked with, and not just talked about.
Even the est. 40,000 APPROVED bone marrow stem cell treatments that are performed each year in the U.S., though often effective, have a significant rate of failure and harm (as in graft versus host disease). And these treatments cost on average $40,000.00. Some treatments for childhood leukemia that use umbilical cord blood as the source of stem cells can cost as much as $200,000.00. Montel Williams’s rant could have been about one of these, our currently best, and approved, stem cell treatments, except no “preying” would have been charged. Our most effective stem cell treatments are still far from perfect, and they are very limited for what types of organs and tissues can be treated.
Good medicine can yield good science. Instead of just blindly screaming bloody murder, we who are the professional scientists and physicians need to put our heads together to identify and strengthen what is good in private stem cell treatment medicine towards advancing stem cell medicine overall. Don’t call on the FDA to shut it down. Instead call on the FDA to lead in investigating it, identifying what is positive, and providing guidance for how to keep it in the best interest of patients who trust private physicians, just as do patients who trust clinical trial physicians.
Could Dr. Oz’s show ever provide such a responsible report of the current state of affairs? Not impossible. But also not very likely…and not sounding like it, given what was posted here to announce it.
Thanks for the alert!
Asymmetrex
http://asymmetrex.com
It’s difficult to comment until after I’ve seen the show but it sounds as if it’s going to be a one-sided, highly-biased hit piece by Dr. Oz of all people. http://www.alternet.org/personal-health/four-biggest-quacks-plaguing-america-their-bad-claims-about-science
It was totally wrong on almost all the info they spouted out. Sad day for those that HSCT can help. Ppl like my son and the 10’s of 1,000 that Dr. Burt in Chicago and others have helped. 10 years later these patients are HAPPY AND BETTER THAN BEFORE.
My fingers are crossed that he gets everything right! If so, this could be the piece we can point to when patients contact us about some clinic.
Well Dr. Oz and panel got it all wrong. So angry right now. Another panel of uneducated ppl talking about something they know little about. That was obvious!!
Hi Jeanne,
I think they did well overall. Did you watch and if so, what did you think?
Paul