Top 10 list of important, easy to understand facts for patients about stem cell treatments
For better or worse, I am in the unique position of being a stem cell scientist and also a former cancer patient. Looking on the bright side this gives me a unique perspective on things compared to many of my colleagues.
I know there are thousands of people out there looking for more practical information about stem cell therapies and treatments. These folks understandably are using the Internet to look for some clear, good info on stem cell treatments either for themselves or their loved ones. Too often the info that is out there is either wrong, partially misleading, biased, or overly complex.
So in this post I want to address this need for trustworthy factual information and no-nonsense perspectives. I am speaking as a scientist, patient advocate and cancer survivor in the form of 10 key realties list below to help you guide your way through the jungle of stuff out there about stem cells. As mentioned above, I have now updated this post for 2016 as some things have changed in big ways in just the past few years. Keep in mind this is not medical advice and you should absolutely talk to your personal doctor with whom you should make your own decisions.
1) Stem cells are often essentially a type of drug and possibly permanent in your body after a transplant. Yeah, stem cells can be extremely unusual drugs, but they are often drugs even if some argue they aren’t. The FDA considers them drugs in many cases. Unlike other drugs, once a patient receives a stem cell drug, it will not necessarily simply go away like other drugs because a stem cell drug consists of living cells that often behave in unpredictable ways. What this means is if the stem cells are doing bad things your doctor has no way to stop it. You have no way to stop it. Also because stem cells are alive they can grow inside your body, move around, and change. This can be helpful or harmful, but the big point is that it is not something that is controllable or reversible.
2) Side effects. Like any medical product, even aspirin, stem cells treatments will have side effects. Not maybe. Definitely. Our hope is the side effects will be relatively mild. Different kinds of stem cells have variable risk profiles, but if someone tells you that the stem cell treatment they are selling has no risks then that is a big red flag and I would walk away. They are either woefully lacking in knowledge or aren’t being honest with you. Sometimes clinics will either on their websites or in person acknowledge risks almost as sort of a disclaimer, but then they’ll tell more casually that there aren’t really any risks. A common statement is “The only risk is that it won’t work.” That’s false.
3) The only stem cell treatment explicitly approved by the FDA for use in the U.S. consists of versions of bone marrow/hematopoietic stem cell transplantation. What this means is that any other stem cell treatment you see advertised on Facebook or Google or elsewhere that indicates it will be given to you inside the U.S. is not FDA approved. The exceptions to this are if it is part of an FDA-approved clinical trial or it is using stem cells in a procedure that meets other criteria (e.g. being both homologous use and minimally manipulated–yeah I know these are jargon terms).
4) If you venture outside the U.S. for a stem cell treatment, use extra caution, but in 2016 also be very careful inside the U.S. Whether you travel abroad or closer to home, have a knowledgeable physician inside the U.S. guiding you, preferably your primary care doctor who mot often are not going to buy into hype. We have to avoid the trap of thinking that only the U.S. can offer advanced medical treatments and these days many American patients get their stem cell transplants here in the U.S. from dubious clinics.
5) Stem cells are not a cure-all. I am as excited as anybody about the potential of stem cells to treat a whole bunch of diseases and injuries, but they are not some kind of miracle cure for everything. When a doctor offers to inject some kind of stem cells into a patient either into the bloodstream or into a specific place that is injured such as a shoulder, we just do not know at this point if it will do any good with the exception of bone marrow transplant. You should start getting worried if the clinic tells you that one kind of stem cell such as fat, bone marrow, or amniotic stem cells can treat many different conditions. There’s no science behind that kind of claim. Stem cells are not a panacea.
Patients often mention to me that the doctors offering stem cell treatments told them that the treatments are proven safe….or that your own stem cells cannot harm you…or that adult stem cells are harmless. I often tell people to think about how much research and how many questions they ask when looking to get a new car. You should bring at least that level of intensity (ideally much more) to getting info about stem cell transplants too as the stakes are even higher. Be skeptical. Ask many questions and if you aren’t convinced, then don’t do it.
6) Don’t let celebrities be your guide to medical care. The number of famous people getting stem cell treatments is increasing including sports stars and politicians. Don’t let what these folks do influence what you decide to do about your health. Just because they are famous do not believe for one minute that they are any more informed than you or your personal doctor about medical treatments or stem cells. If anything I think sometimes famous people are more reckless with their health than average people like you and me.
7) Reach out to scientists as a source of info. As a scientist I am always happy to hear from people outside the scientific community with questions about stem cells and other research. I can’t speak for all stem cell scientists but you might be surprised at how likely it is that if you send them a very short, clear email with one or two questions that they will respond and be helpful. We can’t or shouldn’t offer medical advice, but we can give our perspectives on stem cell research and its clinical potential, etc. Just do not cold call scientists as you are unlikely to find them that way and even if you do, they may be cranky. Email. If they don’t reply try someone else and don’t be offended they we didn’t answer. Often times we may not answer because we are super busy. For instance, I often get more than 100 emails a day.
8) The people selling you non-FDA approved stem cell treatments want your money. As such they will do their best to convince you that their treatment is safe and effective. The more convincing they are then the more money they make. They may offer patient testimonials either from patients who truly believe they were helped or from people who are paid to say the treatment helped them. The bottom line is that the sellers of dubious stem cell treatments are generally in it for the big bucks. Admittedly I do think that some of these providers truly believe stem cells are helpful, but you’ll never see even them offering to give patients the cells at cost. These are instead very much for-profit operations.
9) NEW–Just because something is called a stem cell “clinical trial” doesn’t mean it really is and being listed on clinicaltrials.gov means a lot less than it used to. I am contacted weekly or even daily at times by patients or their families and they are rightly focused on getting information that they can trust. Many stem cell clinics call the treatments that they offer by the name “clinical trial” and that’s often misleading. In the standard meaning of “clinical trial” the experimental therapy being tested has the FDA’s approval to be used in the study, there are data supporting the study, and those doing the trial do not charge patients to be in it. You shouldn’t have to pay to be a guinea pig. I think that’s almost always going to be unethical on the part of those giving it. I often suggest that people turn to the federal website clinicaltrials.gov for information and that is still a great resource, but be aware that many pseudo-clinical trials are popping up on there that are really mostly about making money. They do not have FDA approval in many cases and there are other issues of concern. So even on that website use caution.
10) The most important thing is information/data and you have a right to see it before treatment. Before you or a loved one get a stem cell treatment, ask two key questions. First, is the treatment FDA approved and if not, why not? Second, can you please show me the data that proves your treatment is safe and effective? See what kind of answer you get. If they criticize the FDA or invoke a plot by “big pharma” to block stem cells then that is a warning flag. If they refuse to show you data, then that is a big red warning flag. They may say it is confidential or that it is not published yet, but as a patient you have a right to see the data, assuming they have any data at all.
These facts will likely change over the coming years, but right now I think they represent reality. I know as patients we need hope, but these unapproved stem cell treatments will at best take your money for nothing, and at worst will endanger you or your loved ones.
The post above is for information only and is not medical advice. All medical decisions should be made by patients in consultation with their personal physicians.