stem cell tourism

...go into detail there, but so how do we get here, what are the drivers? how'd we end up with this what i think isa significant problem? and in fact we did a study not that long ago, we did the study of the international stem cell community, and found it was ranked as the numberone policy issue in this area. the marketing of unproven stem cells, above embryonic stem cell research issues, above patenting issues, above consent issues, it was ranked as the number one, number one issue. what are the drivers? well the first is, i've touched on it already, and this is the problem of hype.

this has been an extremely exciting field and there's huge pressure on stem cell researchers to get to the clinic quickly. so that causes or creates an environment where hype is common, and it also can feed patient expectations. there have been a lot of promises in the area of stem cells, for good reasons, but there have been a lot of promises. you get headline after headline after headline touting the great potential of stem cells, right? that stem cells can cure things, that stem cells are going to revolutionize medicine, that stem cells can treat diabetes as this headline says, that stem cell therapy repairs heart attack damage says this headline,

which that was just an early stage clinical trial. then we have peyton manning again. if you are a desperate mom or dad and you got a sick kid, or if you are desperate yourself, and you see these headlines and then read about those clinics, it sounds really plausible, right? it sounds really really plausible. so thathype kind of feeds the industry, right. in fact we just published, just this weekin science translational medicine, this study where we actually mapped how popular culture, how newspapers represent the readiness of stem cells. and so these are real, these are reports of real stem cell research projects and how did the newspapers represent their readiness, and we went back numerous years to map this out. and what did we find? almost 70% of them said that these therapies were going to be in the clinic

in five to ten years or sooner. which is completely unrealistic if you know how translation process works. so we have that kind of hype out there, and it's understandable, i'm not blaming the research community because i think it's a systemic problem, there's so much pressure on them but nevertheless, that hype exists. so you have that kind of hype about stem cells in general and then you also have some fascinating portrayals of these actual clinics. and i want to focus on this a little bit because i think you'll find it interesting.

so this was a study that we did, had published not that long ago, five years ago, and i think it's gotten worse since then. what we did is we looked at how these clinics were portrayed. so these are newspaper stories about these clinics right, about patients going to these clinics. these aren't newspaper stories about stem cell research, these are newspaper stories about these clinics. and look what we found. it's really amazing. we found that almost all of the stories are positive or neutral. so these are stories about these, some of them fraudulent, clinics, right? and in newspapers they're portrayed in a positive light. only a small percentage are viewed as negative. there's that one dip there you see, that's the isscr when the isscr released a report talking about the dangers of stem cell tourism,

but you know it quickly pops up again right after that, the positive tone. let me give you some examples of the kind of headlines. here's one: "dakota was born blind but now the three-year-old can see as a result of getting stem cell therapy," i think this is in china. is that possible? no. "hope for harvey against palsy," they're human interest stories often, "trip to mexico last resort," i really like this example, it's in the toronto star, one of the best-known newspapers in canada.

and the reason i find this one fascinating because not only did they give the trip a very positive light, as you can see in this quote i have here,it's going to cost 150 000 dollars, and they tell the reader where they can send money to donate to send this person to the clinic. which is really remarkable. now i don't know this clinic, i want to be careful about the language i use describing it, but let's just say hypothetically it is a fraudulent clinic, i don't know the intent of these people. the toronto star is helping to raise money to give to a clinic that perhaps is less than honest about what they're doing. i got to be careful about the language there because i don't know the intent of these providers, and that's a very interesting question in itself that deserves more study.

here's another good example from canada. this one came out a little while ago, actually this one came out right before one of the last times i spoke to a stemcelltalks group, and here you have a group of students not unlike you guys raising money to send one of their classmates to china, this is a blind classmate and they're having a penny drive to raise money to send them there. as you can see, thousands of dollars to send them and they were short, so they were going to hold a dance that night to raise the rest, and it's really heartbreaking. here's the student talking, "i just can't wait to see the sun and colours and trees." almost 20 000 dollars the students raised of the 35 000 to send and they were going to have this, as i said,

this dance to raise the rest. heartbreaking, right? heartbreaking. and here is a very recent one and it's a great, great example for you guys. so this is a couple from edmonton basically, st. albert's just outside edmonton, and this couple, this family is sending their father to mexico to get a treatment similar to what gordie howe had. now the reason i find this so fascinating is it was the gordie howe story, and they say that, they're quoted there, that caused them to go to this clinicand spend their money on this clinic. so, this other interesting phenomenonthat's happening and other driver is that, and this again relates to my introduction, is that increasingly stem cells are talked about in completely i call them "critic-free zones," so we're not talking about the front page in the newspaper or the science section in the newspaper,

this is now increasingly talked about in the sports page. and i love the nadal example, in fact we did a little study on this, on how it was portrayed, and the nadal story was, everyone knows nadal, right? he allegedly got--i think he's number three in the world now--he got stem cells on his lower back, and it was portrayed absolutely everywhere as efficacious or at least the effectiveness was assumed. and this was all in sports publications, right, espn, sports illustrated, the washington post sports section, tennis world, fox sports, this is where it's portrayed. there is no critical portrayal of stem cells there, it's taken for granted that it's going to work. the only critical one i could find was by a stem cell researcher in california.

he does great work, this is a great blog by the way, if you're interested in stem cells, and he's, you know, he points out how this is probably a dubious stem cell treatment. the other place it's completely shown as completely efficacious is in the context of the cosmetics and anti-aging. in fact it's portrayed as if stem cell skin therapies are one of the most major medical breakthroughs in history-- god that's a terrible sentence-- and are being widely used as treatment options for the cure of cancer and other diseases. what a great example of scienceploitation. they're saying it's already being used to cure cancer and other diseases, there's, you know, some cancers it's being used for and now they're using that excitement

to sell these bogus treatments, and here there's so many of them, facelifts, and i love, again in fact, it's so ubiquitous now that elle magazine, everyone knows elle magazine, probably, they have a list of the best stem cell face creams as if it's so efficacious and effective that we can now start listing the best ones, right. it's just ridiculous. now the other place it's starting to happen and become more common is in the context of social media. and we're doing a lot of work in this area, so we've already looked at patient blogs and what did we find there? no surprise, the reason patients are going to these clinics is because they believe there's no side effects associated with them, they think that that's the only choice thatthey have, that they may die anyway,

and that why not give it a try, who can say. but the one i find most interesting is the one on your right there where a lot of these patients portray themselves as science pioneers, therapy pioneers, and they're angry at their home jurisdiction, whether it's canada or the united states or the uk or wherever, they're angry, they think it's deplorable and inhumane that they must put themselves in harm's way, these treatment should be available in canada, is the language. again, as i said before, as if these things are effective and they're being withheld. and that same message came from that gordie howe story from edmonton that i just referred to, the patients thought it was effective and "why isn't it being offered in canada?"