There are more good guys and bad guys out there than ever.
In the Old West, at least as portrayed in the old movies I used to watch as a kid, the bad guy often had a black hat and the good guy a white hat. In the stem cell world, it is not that simple…the bad guys don’t wear black lab coats and the good guys white ones.
Sometimes it may be difficult to tell who’s who….and of course sometimes people fall into the “gray zone” in between.
As more and more patients consider treatments it is becoming increasingly important to equip them with tools to sort out who’s legit and who isn’t in the stem cell universe.
The stem cell good guys have no interest in seeming like bad guys, but the stem cell bad guys sure do want to appear like good guys, right?
So sometimes it is hard to tell the difference.
Today I’m talking about some ways to tell the difference.
Keep your ears open for talk of the “plot.” What do I mean? The stem cell bad guys talk about mythical secret plots by Big Pharma, Scientists, and the FDA against stem cell treatments. The bad guys frequently invoke such wild plot theories (stated as fact) as excuses.
Speaking of excuses, the bad guys also somehow just never publish their supposed “clinical trials” or their research more generally. Why? They say it is because the journals and their fellow stem cell scientists, who review their papers, are in on that same big secret plot against them. The good guys are far more likely to have a track record of published papers.
As a patient or otherwise a non-scientist, you may ask me, “Okay, Paul, so how do I figure that out?” It’s not complicated or requiring of a science background. You go to the Pubmed database, available to everyone on the globe for free here.
You type in the names of the doctors at the clinic, last name first and then include a first initial. Then you simply put the search term “author” in brackets afterwards and hit “enter”.
For example, for me it is:
Then look at the publication record.
If this doc has a common last name, you might want to include both first and middle initial together (e.g. knoepfler ps[author] for me). You can also limit the search to be more focused by including a second term such as “stem cells”.
For example for me you could do the search as:
knoepfler p[author] AND stem cells
The “AND” should be in ALL CAPS.
You want the doc doing your stem cell treatment to have a consistent stream of publications, usually at least one every year. Ideally you want to see publications specifically mentioning your disease of interest…the doc should be an expert in that.
OK, what else are clues to differentiate between the good and bad guys?
Generally speaking, the good guys of stem cells might suggest you consider a clinical trial at no cost to you, while the not-so-good guys charge you to be in a clinical trial that is assuming they have a clinical trial at all.
The good guys of the stem cell world also, while perhaps wishing the FDA would move faster on clinical trials, generally do not use angry words in front of patients against the FDA. So if you are considering a treatment at a potentially dubious clinic, a good test for you as a potential patient or parent of a patient is to ask the doctor his view of the FDA….something like “What’s your relationship with the FDA?” is a very effective question. If they turn red and look angry or upset, I’d move on elsewhere.
The good guys of the stem cell world are typically very excited to tell you about their research…perhaps a little too excited, but in a good way. Kind of like a grandparent glowingly going on about how their grandkid did in school. Good scientists may talk your ear off about the work they are doing. They might introduce you to their students or other trainees. In contrast, the bad guys generally avoid specifics and are more likely to introduce you to patient testimonials. They start getting nervous if you ask questions like “How exactly will this transplant work?” and try to change the subject. If they do answer your question they may go to one extreme or another. They may use a bunch of hopped up jargon to try to make you feel stupid or to the contrary they may oversimplify it to the point of being meaningless.
A good general rule of thumb is that if you don’t understand how a stem cell treatment will work and it doesn’t make sense to you based on what the doctor or clinic told you, you are not stupid, but rather the treatment is likely bogus. Give yourself credit.
If a doctor or clinic says you must go outside the U.S. for a stem cell treatment, you should be extra cautious. A reasonable question to ask is “Why?” Again if the FDA gets trashed in the answer or plots are invoked, it’s not a good sign.
Another good question is to ask the doctor what his training was in stem cells. The truth is that there is no medical specialty in “stem cells” or “regenerative medicine” so watch out if they claim they did such training.
Also look out for claims that sound too good to be true because they are almost certainly lies.
90% cure or “success” rates are, for example, too good to be true.
100% safe is a lie.
Also watch out for the doctor who says he himself got a stem cell treatment or his kid got one…this is a big red flag.
It’s really a jungle out there in the stem cell world nowadays with an ever-increasing number of dubious clinics that simply want your money.
You may ask yourself, especially if you have a very serious medical condition “What have I got to lose? The worst that can happen is that it won’t work”. However, that is not true. Dubious stem cell treatments done by doctors or fake doctors out to take your money could seriously injure or kill you or your child.
I hope this post helps you navigate these dangerous waters.