For me it’s been a wild week of grant and paper writing, grant review, going over data, and more, but finally I had a chance to watch this week’s Dr. Oz show on stem cell clinics in full last night and I give it an A+ grade.
A show producer went undercover with an MS patient to a number of stem cell clinics and let the clinic people’s words do the talking about what’s most important to the clinics: money and not patients’ well-being.
The guests on the show included actor and MS patient Montel Williams and stem cell scientist Dr. Sally Temple, the President of ISSCR. They and Dr. Oz all did great on covering this issue. A special shout-out to Sally Temple for doing the show. Not many leading scientists are willing to put themselves out there to make a difference like that.
The show combined science, medicine, and compelling personal stories together with the undercover videos to expose the stem cell clinic industry for what it actually is: an endeavor almost solely focused on making money taken from vulnerable patients. It’s an industry that collects tens of millions of dollars from patients for experimental offerings that have little-to-no data behind them. No FDA approval.
And there have been bad outcomes ranging from deaths to blindness. Tumors.
If certain stem cells work and are safe for specific medical conditions, you must prove it scientifically and medically, and you have to do that first before you start marketing it. This means putting patients before profits.
Many biotech companies are doing exactly that and there are a host of promising investigational stem cell therapies in various clinical trials. Some will be proven safe and effective, which is so exciting! Others won’t work out. We can’t know the difference in advance of getting the data, but stem cell clinics are pretending they know their stuff works and is safe.
What do I say to patients who believe that the offerings of stem cell clinics do work?
Each of us understandably place great weight on our own individual patient experiences, but the experiences of one, ten, or even many more patients don’t prove things if they aren’t studied carefully with controls and in an unbiased manner. In biomedical science we learn that often, even if we are excited about an idea/hypothesis, once we carefully study our data collected from enough properly controlled experiments and it all gets examined critically by qualified colleagues, we end up being proven wrong. Sometimes we are right. The key thing is you have to let data tell the difference rather than hope or belief.
I appreciated how Dr. Oz issued a call to action at the end for his wide audience to tackle the major problem of stem cell clinics. We all need to work together on this. There’s going to be major positive impact from the show as a starting point to more action that involves the FDA, the FTC, and other governmental agencies such as state attorney generals and medical boards.
Do you have a link to a video recording of the show? The episode for February 14 on Dr. Oz’s website links to a different program: “What Happened to Laci Peterson?”, and the stem cells show link from his Facebook page also goes to this other video. Have they been sued over the program content and so pulled it from online? I would really like to watch it. Thank you very much.
I’m getting treated in the Cayman this week. If I get knee cancer and don’t make it back, I was too cool to share a world with the likes of you anyway.
Oh, I will miss your “Life of Brian” posts – they were always entertaining. But anyways, make sure to send a biopsy for analysis or the happy clappers won’t believe you.
I had my stem cells removed from my blood and injected back into my body at a cost of $7500.00 plus various after medications. I got ill and I didn’t get any relief for my COPD which is what was advertised by the organization.
I know that stem cell treatments will eventually be an answer but I am desperate and grabbed at the chance. This was done in Tampa, Florida.
What’s the point of taking stem cells out of your blood and re-injecting them back into your blood? They were already there in the first place. That doesn’t make any sense.
@Bill,
We agree on this one. To me this makes no sense. Paul
Yep – The world is changing
New models – new thinking – new designs
You won’t get your perpetual R&D funding back by bashing those who are moving with the times
If you stick to the old models you will be lost forever – and forever a blogger
https://www.fda.gov/downloads/drugs/guidancecomplianceregulatoryinformation/guidances/ucm351264.pdf
https://www.fda.gov/downloads/drugs/guidances/ucm201790.pdf
This show simply infuriated me. I was diagnosed with ms 45 years ago and have experienced a multitude of ms symptoms. In fact, I began ms modifying drugs before they were released to the public. My neurologist entered my name into a lottery and I was selected. I began slipping into secondary ms four years ago, and we knew we needed to get help somewhere. That is when I stumbled onto XXX Institute. We proceeded to do our HOMEWORK and decided to go to XXXX.
I’m here to tell you that I became a changed woman after my first infusion of umbilical cord stem cells. I thank God every day and it has been 2 1/2 years and I continue to thrive.
It’s quite apparent that you need to do more homework before making the statements that you did on your show.
My family and friends, along with myself, spread the word to help others do their investigations into stem cell therapy, and a show like yours simply put us back with all that we do to help people in need. Shame on yourselves.
Cathy Duke
Cathymduke@gmail.com
Editor’s note: location and name of clinic are removed per blog policy as promotion (even unintentional) of clinics is not permitted.
@Cathy,
I have no doubt of your experience and thanks for sharing it. The problem is that one person’s experience is not proof that something works and is safe. Even a dozen people’s experiences need to be analyzed impartially and careful reviewed by people without a financial interest to know what they mean. The place you went should publish their data in a peer-reviewed journal, use appropriate controls, and not charge for it until it is scientifically proven to work and be safe.
@Cathy,
“Thanks for sharing your experience. In medicine, even one person’s experience could be the beginning of a better understanding of a daunting disease. Often examination of dozens of people’s experiences, analyzed as impartially as possible, and carefully reviewed by people without a financial interest, does not yield a clear understanding of what they mean. The place you went might publish their data in a peer-reviewed journal if the three or so experts selected to review it allowed it; controls that some might consider appropriate or even required would be unethical; and charging for it is allowable because of its intent to treat, and many approved treatments also often don’t yield the desired outcome. Finally, with the scientific approach, few if indeed any hypotheses are ever proven. The goal is to investigate whether there is sufficient confidence that a hypothesis is likely to apply in the future with a measurable degree of uncertainty. Time and experience in medical practice can afford similar levels of statistical confidence for safety and efficacy.”
James at Asymmetrex
http://asymmetrex.com
jsherley@asymmetrex.com
@admin – What is your opinion on Montel forming his own medical marijuana business and promoting the drug it produces as a treatment for neuropathic pain caused by MS based upon his own personal experience and without the company conducting any safety trials, placebo-controlled clinical trials or seeking FDA approval?
Yes, that is an interesting point Bill. I will be awaiting their answer.
crickets….
@Bill, I’d have to learn more about the data that is out there on medical marijuana and neuropathic pain. As you know, I am skeptical of things that aren’t backed up by data from careful experiments so that skepticism applies to this too. Of course another difference with marijuana is that here are federal laws on its use, conflicting state laws, and recreational use issues. These things don’t really apply to stem cells so not the best comparison, but I get your point, Bill. Paul
The point is, has Montel’s company done trials with the specific drug that they are selling? And the answer is “no”. You know that. He’s doing exactly what you oppose except his politics are liberal and his drug of choice isn’t stem cells. If Texas says autologous stem cell treatments are legal there, is that ok with you? Is that any different than pot in California?
@Cathy Apparently, your personal experience doesn’t not carry the same weight as Montel’s.
I’m not necessarily a big fan of Montel’s as I don’t really know that much about him recently so I wouldn’t say his experience carries more weight than any other patients.
Missed the show also – any chance you have a link to the episode? Thx.
Cheers
It was full of untrue statements re HSCT/Stem Cell treatment. Sad day for MS patients that will not seek this amazing “cure” because a panel on Dr Oz got it all wrong.
The XXXX Institute in XXXX does not promise a cure. In fact 65% of people who receive their treatment will see improvement. But in saying that, I will also comment that there are no side affects when receiving stem cells. However, when using the disease modifying drugs (which the FDA stands behind, gives many many users side affects (me included). I personally got to a place where my symptoms were increasing even while on those drugs. The FDA is not certain why the approved drugs will keep symptoms at bay, and that is a key point, in my opinion, where I should have the right to receive stem cells if I choose to do so even though they are at their infancy.