Chuck Murry, MD, PhD, Director, Institute for Stem Cell and Regenerative Medicine at UW Medicine talks about stem cell clinics, and what buyers need to look out for.
Interview conducted by Ivanhoe Broadcast News in April 2019.
Let’s talk a little about the proliferation of these private stem cell clinics. You are personally offended by this. I can tell.
MURRY: I am. I’m slightly indignant about the whole operation. I myself have been trying to put stem cell therapy online to regenerate people’s hearts and it’s taken us about 20 years. And when I see people leapfrog over painstaking science and go direct profit, I find that very frustrating.
How is that even happening?
MURRY: It’s kind of like the Wild West. It’s as though people can just go and set up a shop and say we can cure anything with these cells as though they have magical powers not defined by biology or physics and they just wait for people who are desperately ill to come in and its completely unregulated. The Food and Drug Administration is becoming increasingly concerned about it and they’re starting to act. But I think the FDA waited too long to start. This blew up on them and there’s 900 or so of these clinics around the country right now. And that is way more than they have the human resources to deal with.
What can be done at this point?
MURRY: Well consumer education is the first thing. The more educated the public is, the better. It’s buyer beware, basically, when it comes to this. So that’s the that’s the first thing. The second thing is that we can’t rely on the federal government to do everything. We’re going to have to rely on state governments to try to get involved, state medical associations and maybe some attorneys general who can have more and more resources at their disposal and can take care of these problems locally.
There have been many stories on stem cells and how they truly are going to be the next frontier in a lot of medicine.
MURRY: That’s right.
You can see why people would see it and take a chance on it.
MURRY: Yeah. Stem cells are going to be a revolutionary treatment for all kinds of diseases for which we currently have inadequate therapy. But this is a slow revolution. It’s not like when chemists could make little things in a test tube and it was very easy to take that into people. This is so much more complicated. This is cells as medicines. And so learning the rules has taken us a couple of decades. We’re just starting to get to the point where we can in good conscience administer these to patients.
What’s the danger to patients other than it not working?
MURRY: The first thing is you can lose a lot of your hard earned money, because these are all cash on the barrel basically to pay for it. The second thing is that people have been seriously harmed by this. People who have gone for injections in their eyes have been blinded. People who have gone for injections into their knees or into their backs have gotten infections that led to bone infections, things like that. Other people who have gotten injections into their brain for central nervous system disorders have had brain tumors come about as well. A woman had a tumor growing in her kidney as well from a result of these unregulated cell therapies. So these things have not been tested. They’re not manufactured under controlled circumstances. And some of them are playing out fraudulent where they will give you Novocain in your knee instead of stem cells. And of course the pain goes away for a little while because it’s anesthetic.
How do you address the hope component of it?
MURRY: Hope is really important in medicine. When people lose hope they tend to go downhill very rapidly, because loss of hope leads to despair, and this starts a big downward spiral. So hope is absolutely essential for patients to do well to recover. The last thing you want to do is to take away hope. That is personally what makes it difficult for physicians. When people call me and I urge caution about these clinics, they say, what can you do for my multiple sclerosis or for my child who has this devastating illness? And I say, the field is working very hard on this, but today we only can offer conventional treatment, and I strongly urge you to stick with it. We hate not having better therapies, and we empathize with the psychology of the patient who is desperately ill. But that is where our professionalism as physicians need to step in. We have to help them choose and not leave them to their own devices.
Umbilical cord stem cells, autologous – is there are a lot more than that and is one better than the other or worse than the other as far as these private clinics go?
MURRY: First off, there are legitimate uses to stem cells. The entirety of bone marrow transplantation, which is a medical wonder, is based on stem cell science and Nobel Prizes were awarded for it and so forth. And that’s really been the first stem cell approach, and then umbilical cord blood came along, and that’s also a legitimate, authentic use of stem cells. But, all of that is to regenerate people’s blood-forming ability. The use of stem cells for anything else is experimental or fraud. If it’s experimental, you should never be charged for it. So anytime somebody wants you to pay for a stem cell treatment, aside from bone marrow transplantation, you should be very suspicious. Look at what are these clinics using. They’re using bone marrow. They’re using cells from fat, where they do liposuction basically and then spin the stem cells out of that. These aren’t even truly stem cells. They’re just blood vessel cells and connective tissue cells, and they’re administering them back in. And then there’s even sketchier cells that come from amniotic fluid, where you aspirate the fluid that a baby is suspended in or you grow them from the amniotic membranes after or after a child has been delivered that sort of thing. These cells are not well taken care of there. We really don’t know what the history of these is. These are typically grown up by people that don’t have pharmaceutical grade facilities for cell manufacturing and that sort of thing. And I think it’s very sketchy. The quality control steps are simply not in place for most of these people to be doing legitimate cell manufacturing.
If there are 900, some people must be believing that it’s working.
MURRY: Some people must be believing that this is working, and that’s really interesting. And so then why is it that some people believe strongly in these? And I’ve talked to many patients who have what I call testimonial level evidence – just individual stories where something seems to have worked. So there’s two possible reasons. One is that there is some biological activity to these cells, and maybe they are anti-inflammatory, maybe they can tell the immune system to chill out a little bit so that it makes your arthritis less painful, that it unseizes your shoulder a little bit so that you get better mobility. So that’s certainly a possibility. And then the second is this thing called the placebo effect. We know that when people enroll in medical protocols they feel better. They go to see physicians, and they feel like they’re proactive in terms of doing something for their health, that sort of thing, and their body and their spirit seem to do better. And so that doesn’t mean nothing is going on. It just means that it’s you can’t attribute it to the cells themselves. So those are the two reasons that I could think of. But if there is real potency to these cells, it should be discoverable by standard rules of Western medicine, which is like, let’s do a study. Let’s gather some data and let’s see how it compares to the standard of care. Is this better same or worse? It’s not that hard, and that’s not being done. They just skipped all that hard work in the middle.
What would you like to see happen?
MURRY: I think what needs to happen is a multi-pronged approach. We’ll continue to strive for public education on this, but I think the impact of that is going to be limited. I think that the desperation of being ill is going to override the rational effects of public education. And so I think the state needs to do something – state, broadly speaking. I think at the level of the Food and Drug Administration – I think they need to continue cracking down at a much higher rate than they’re doing right now. Then I think the states are going to have to get involved. I think State Medical Association, state legislatures and then the Attorneys General as we have seen in several places – there was a great example in North Dakota where the Attorney General just cracked down on the leader, the first stem cell clinic that opened up in the state. They were shut down within a couple of weeks. And that has been the end of it from the state of North Dakota. So now mind you’re a very small state. You know, it’s easier to do things in a small state, but it’s an example of success.
What haven’t I asked you about the issue that you’d like to get across?
MURRY: In terms of the future there is a lot of reason to be optimistic. Stem cells are going to change medicine in several important ways. First the easiest one to imagine is that cells are going to be medicines. They’re going to be the building blocks through which we can regenerate tissues. The areas that are the furthest along are the eye for macular degeneration, retinal blindness, that sort of thing. In the brain for Parkinson’s, spinal cord injury, insulin producing cells for diabetes and then my own field part where we think we’ll be able to regenerate human heart as well. So those are sort of the big five right now. And then following that will be kidney and lung and cartilage for arthritis and things like that. So, I think there’s really a lot of reason to be optimistic that we’ll actually be able to rebuild the body from its component parts. What’s less obvious, but maybe as impactful, is the cells as drug discovery vehicles. We can now generate any cell type in the human body – brain, liver, heart, muscle, whatever we need, and we can find drugs that will impact diseases of those systems. Or, we can find unexpected toxicities, for example, does something make the heart’s rhythm go wonky, which is a really common complication of a drug that is hard to predict. And if we can use heart muscle cells for humans in a dish to find a lot of these toxicities we don’t have to spend a billion dollars on a clinical trial in order to just withdraw the drug later after it’s caused complications. So I think stem cells are going to impact all of these areas of medicine. I’d just like people to hang in there with us while this is getting legitimately developed. It takes time. If they get fed up with these predatory stem cell clinics, I hope they don’t paint us all with the same brush.
END OF INTERVIEW
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