Stem Cell Infusion : Youthful Miracles

"[YouTube's one billion audience reaches more people than any television network] and presents a formidable platform to market unproven SCTs [stem cell therapies]."
"Providers often use misleading claims, hard sell promotional techniques, an base efficacy claims on patient testimonials."
New Study, published journal Stem Cell Reports

Terry Storm, shown in 2012, works in a Stanford University lab funded by the California stem cell program, which will soon come to the end of its $3 billion in state funding. (Paul Sakuma / Associated Press)

"[The power of the personal-story narrative] often overwhelms the data. It becomes very clear that patient testimonials, patient narratives, are a huge part of the marketing strategy."
"But despite all of the pop culture representations, despite all the excitement around these therapies, there are very few ready for the clinic. If  you see a stem cell therapy being marketed in your newspaper, on YouTube, it's almost for sure an unproven therapy and, at best, experimental."
"Of course testimonials are powerful, because there's a story being told."
"I think we need health-care professional organizations like the College of Physicians and Surgeons to stop their members from operation unproven stem cell therapies."
"Sometimes patients may see studies that have been done. These are generally observational studies, they're not well-controlled studies. So, they’re just asking patients, ‘how do you feel?’ You know placebo effect can play a big role. Especially when there’s a ‘placebo theater’ when there’s fancy technology and someone in a lab coat and people are paying a lot of money and we know that studies tell us, expensive placebos work better."
Timothy Caulfield, Canada Research Chair, professor of health law and policy, University of Alberta

A doctor at a stem cell clinic in Beverly Hills, Calif., collects fat from a patient's back as part of a stem cell procedure in 2014. The U.S. has experienced a boom in for-profit clinics marketing stem cells to patients for a wide range of ailments. Critics say they have flourished because of a lack of oversight. The U.S. FDA recently sent warning letters to two clinics and said it will take a firmer approach to stem cell clinics. (Raquel Dillion/The Associated Press)

Dr. Caulfield, who collaborated on this new study with American and Canadian colleagues, searched through YouTube to find videos relating to five medical conditions, focusing on ALS, cerebral palsy, multiple sclerosis and spinal cord injury, whose sufferers had sought out stem cell therapy, none of which would have been approved for therapeutic purposes. The study team focused on 159 videos for analytical purposes which (with the exception of three) were published by clinics whose therapies were unproven.

Most of the clinics, unsurprisingly were located in India. Next up, the United States and Mexico. Most of the people who sought out this type of stem-cell therapy were Americans -- the next largest groups were East Indians followed by Canadians. The videos featured people describing the process of injections with adult, bone marrow-derived umbilical, fat, placental or fetal stem cells. While effusively praising the therapy, mention of risks appeared an afterthought with merely ten percent of the videos speaking of downplayed risks.

One video alone has seen two-and-a-half million viewers watch an interview by comedian Joe Rogan of actor Mel Gibson, speaking about his 92-year-old father's miraculous regeneration following a double dose of stem cells extracted from umbilical cord blood injected into Gibson's father's hip. He began walking again, his eyesight improved, "cognition power" improved, his prolapsed heart valve healed -- according to Gibson -- in response to Rogan's skepticism. This one interview alone attracted more viewers than any other single YouTube topic.

The stem-cell clinics convincingly inform prospective clients that their therapies -- priced from several thousand at Canadian clinics to six thousand and steeper at those in the United States -- that an infusion of stem cells at their clinics can succeed in dramatically decreasing inflammation, and regenerate diseased or damaged organs and tissues. It's a sales pitch that people are eager to embrace, and to try out for themselves, envisioning an entirely changed self, a renewal of life's prospects in extending quality of life and a more enduring life.

At a Florida clinic, on the other hand, after stem cells were injected into the eyes of three women, the therapy left them blind. And while legitimate research scientists do believe in the potential of stem cells to grow new tissue -- replacing diseased or worn-out ones -- not all therapies are created equal, nor do they have the required experimental research to back up their quality and effectiveness claims. Some that do have papers to bolster their claims for success reporting improvements to some of those treated by them.

In Canada, although Health Canada has failed to involve itself in regulating the industry, it has issued warnings of unlicensed clinics offering unauthorized cell therapies, stating unproven claims that may in the final analysis pose serious risks to people anxious to give them a try. In videoed testimonials people are seen to describe their therapies and how their stem cell treatments have led them to increased appetite, strength, movement and flexibility. Some, on the other hand, also mention such changes to be of short duration.

Some claim to owe the new quality of their lives to the clinics treating them. Others speak of how swiftly the therapy's improvements in their function kicked in: "I started walking straighter. My energy came back and I'm amazed at how quick it happened." Dr. Caulfield is of the opinion that science must work harder at communicating both its promise and its limitations to people. That the same kind of communication strategies used by stem cell clinics who operate for profit, not science, would be useful in educating people.

"We need to use narratives, we need to use interesting videos in order to get across the good science. It's starting to happen. But we need more of it to fight this", he explained. Popularizing science in the field of health sciences so that people can have a more realistic understanding of just what it is they are so quick to submit their bodies to, in the hope that the therapy will work, because those selling it to them assure them it would.

"They are experimental [stem cell therapies]. We don't know if they work, and we don't know how safe they are."

"If a patient called me up to say they are thinking of getting the therapy from a practitioner offering it like this for a fee, I would say that I don't think that's wise."
"I don't think they know they are going to get any benefit. I think they are taking a potential risk, and all of these therapies should be offered within the context of a properly designed clinical trial."

"It is kind of scary because there is theoretical risk that there could be tumours that form. There is a theoretical risk of blood vessels forming where you don't want them to form — for instance, the back of the eye or other places, so all of these things could happen."

Dr. Duncan Stewart, scientific director, Ontario Institute for Regenerative Medicine

Researchers examined the training background of clinicians at 166 companies advertising unproven stem cell therapies in California, Florida, and Texas. (Spencer Platt/Getty Images)