Sometimes when I talk about possible placebo effects with fans of stem cell clinics I feel like placebo becomes akin to a bad word in the discussion. However, any kind of medical procedure can cause placebo effects in people. We’re all susceptible to it.
I believe that many perceived positive outcomes at stem cell clinics are really placebo effects.
For one thing, many patients have told me about a phenomenon I’ll call “the fade”. Stem cell clinics themselves know exactly what I mean by “the fade.” It’s a big reason I think there isn’t a genuine positive benefit of the stem cell clinic offerings.
A typical patient going to a stem cell clinic (even patients who become big fans of clinics and of less FDA oversight) who thinks they benefited does not have a lasting positive outcome, but instead has only a temporary sense that they feel better. This improvement generally fades within days, weeks, or at most a few months.
Admittedly, it’s possible that “the fade” is sometimes not due to placebo effect and instead could be due to the body taking some time to eliminate the injected stem cells, but I bet it’s mostly placebo-related. Either way it means patients don’t get what they have come to expect. Another thing that supports the idea of placebo effects being common at clinics is that both some patients and clinics will sometimes say that they either instantly feel better or feel better within just minutes. No, stem cells aren’t magic that works so fast like that.
What happens next for patients with quickly fading perceived results?
After one injection and “the fade” kicking in, the clinics will frequently tell the patient they need another stem cell injection and in fact they can get a somewhat discounted price on injection 2, which then becomes injection 3, and so on. Clinics make big bucks off of repeat customers, while usually neglecting to tell new patients that the typical customer does not just get one $5,000 or $10,000 injection (or more), but many such shots.
Some stem cell clinic customers fully acknowledge that they might have had a placebo effect from clinic injections, but others get offended at the idea. The effect may also be related to expectations and clinics often do hard sells on the supposed miraculous power of their stem cells (see image above).
In a 2013 article on Texas stem cell clinic Celltex, Dr. Arnold Caplan, often called the godfather of mesenchymal stem cells, the type used at most stem cell clinics, had this mind-blowing quote on expensive placebo effects (note that “Jones” mentioned is a Celltex leader who himself got stem cells):
“Jones found he needed another stem cell infusion four months later (he has had them every four months since) to keep his symptoms under control. “I’m afraid to be without stem cells,” he says. So far he’s received 3 billion stem cells by infusion and injection and spent more than $100,000. Plenty of people, including medical colleagues, have suggested he’s experiencing a placebo effect. Jones is convinced he’s not. “My therapy was real, it was effective, and it made me better.” The most rigorous trials—double-blind, randomized, placebo-controlled—are designed to prove any benefits are due solely to the treatment. “There’s no question that with therapies like this there is a very high placebo effect,” says Caplan of Case Western. “The FDA will shudder, but I say, if you want to pay $25,000 and get pain relief for four months as a placebo, go do it.”
Caplan is right about the big potential for placebo effects, but I don’t agree with him on the idea of it being OK that patients may often be getting just placebo effects. Also, from what I’ve heard “the fade” usually kicks in earlier than four months. This quote further doesn’t really seem to appreciate the economic hardship that many patients go through, sometimes through online fundraising that exposes their private health info, to pay that price tag. I also doubt that the average patient thinks the benefit will only be for a month or a few months at best.
Finally, placebo is actually a good word overall as it is used to describe a component of a properly controlled, blinded clinical trial, one that is actually able to really tell if stem cells really work and are safe.