The stem cell scam: a 60 Minutes expose on the medical snake oil of SCs

[ActiveMSers]

While I participated in an NIH-sponsored clinical trial in the US that was a genuine stem cell transplant, many others with MS (and other diseases) are going out of country for stem cell "infusions," which have zero scientific research backing the procedure up. They are expensive and most, sadly, have a snake-oil element.

Click here for the 60 Minutes story, which aired recently.
http://www.cbsnews.com/stories/2010/...in;cbsCarousel

[KristaH]

That is really sad, I can see why people would try it though. I just wish people would do their research better, and not believe everything they read on the Internet as truth.

[Marinadca]

It is really sad. Over on MS World there is a sub forum dedicated to it....and at first it made me feel hopeful that maybe if things got bad this may be a viable option. But....the more I read about it the more it seems like a good way to separate desperate people from their money

Though I really hope it is a good treatment for those who've already invested in it.

[AMFADVENTURES]

60 Minutes, CCSVI, SCT and DMD’S, I’m so confused

I’m having a difficult time forming an opinion on these things. There are just too many conflicting forces at play that I just cannot sort out. To mention a few:

The US is not the only country in the world with successful research programs. Although it is not something I follow, I think most of the originating developments in organ transplant technology in the last 30 or so years came from outside of the United States. I believe that riskier curative research is much easier to conduct outside of the US and that the potential rewards for success might be more meaningful to a foreign country. The bureaucratic hurdles and financial wrangling in the US cannot possibly be an advantage either.

The laws of supply and demand in conjunction with capitalism, entrepreneur-ism and greed will ensure that there will be a supply for every demand regardless of legitimacy. In a world economy, which does not operate under a unified rule of law, that is a frightening thought. Buyer beware at the very least, but what may seem like an obvious fraud to me might look like a last good chance to someone whose body is disappearing from under them. What constitutes fraud anyway. Are stem cell infusions fraudulent if rigorous physical therapy is the fundamental element of some level of success? By virtue of the placebo effect, even a sugar pill can effect some measure of success. Is that fraud?

Drug companies in the US enjoy a much greater financial return by generating expensive recurrent “treatments” than they do searching for cures. Could that interest extend so far as to discredit and dissuade potential cures regardless of validity? I really don’t know but judging from the financial destruction our own government in conjunction with large financial institutions recently perpetrated, regardless of intent, I’d have to think it is a possibility. And there is no doubt that big Pharma has the financial where-with-all to exert their influence, even impose their will, in many, many different ways. Do not misunderstand, I am not anti big Pharma, they are only operating to the best of their ability under the socioeconomic structures that exist in our society.

My own MS clinic has changed their treatment philosophy a couple of times over just the last 10 years. They went from prescribing a single DMD to prescribing more than one and they changed their treatment of SPMS from “nothing to be done” to continuation of RRMS treatment. I believe there was some research basis conducted by the drug companies, but nothing sensationally successful or explicitly conclusive that I can recall. I do not doubt that the MS clinics may also be susceptible to grasping at straws, in fact, they have reinforced my belief that medical science knows very little for certain about MS.

Add to all of this the current feeling of distrust prevalent in all things not related by blood. I certainly include our own media who have proven time and time again that sensationalism is more important than fact, cause is more important than truth, advertising more important than anything. While they may be quick to pounce upon the potentially fraudulent, they seem much less inclined to investigate things as potentially meritus, unless of course there is a certain saleable “feel good” aspect involved. Just what is a person with MS to think or do?

Sorry if appear negative here, it is not usually my style. I generally try to be so positive that I am occasionally accused of being in denial. I can only think that if I am in denial, how much worse is the condition of our nation.

AMF

[Niko]

I’m having a difficult time forming an opinion on these things. There are just too many conflicting forces at play that I just cannot sort out. To mention a few:

The US is not the only country in the world with successful research programs. Although it is not something I follow, I think most of the originating developments in organ transplant technology in the last 30 or so years came from outside of the United States. I believe that riskier curative research is much easier to conduct outside of the US and that the potential rewards for success might be more meaningful to a foreign country. The bureaucratic hurdles and financial wrangling in the US cannot possibly be an advantage either.

The laws of supply and demand in conjunction with capitalism, entrepreneur-ism and greed will ensure that there will be a supply for every demand regardless of legitimacy. In a world economy, which does not operate under a unified rule of law, that is a frightening thought. Buyer beware at the very least, but what may seem like an obvious fraud to me might look like a last good chance to someone whose body is disappearing from under them. What constitutes fraud anyway. Are stem cell infusions fraudulent if rigorous physical therapy is the fundamental element of some level of success? By virtue of the placebo effect, even a sugar pill can effect some measure of success. Is that fraud?

Drug companies in the US enjoy a much greater financial return by generating expensive recurrent “treatments” than they do searching for cures. Could that interest extend so far as to discredit and dissuade potential cures regardless of validity? I really don’t know but judging from the financial destruction our own government in conjunction with large financial institutions recently perpetrated, regardless of intent, I’d have to think it is a possibility. And there is no doubt that big Pharma has the financial where-with-all to exert their influence, even impose their will, in many, many different ways. Do not misunderstand, I am not anti big Pharma, they are only operating to the best of their ability under the socioeconomic structures that exist in our society.

My own MS clinic has changed their treatment philosophy a couple of times over just the last 10 years. They went from prescribing a single DMD to prescribing more than one and they changed their treatment of SPMS from “nothing to be done” to continuation of RRMS treatment. I believe there was some research basis conducted by the drug companies, but nothing sensationally successful or explicitly conclusive that I can recall. I do not doubt that the MS clinics may also be susceptible to grasping at straws, in fact, they have reinforced my belief that medical science knows very little for certain about MS.

Add to all of this the current feeling of distrust prevalent in all things not related by blood. I certainly include our own media who have proven time and time again that sensationalism is more important than fact, cause is more important than truth, advertising more important than anything. While they may be quick to pounce upon the potentially fraudulent, they seem much less inclined to investigate things as potentially meritus, unless of course there is a certain saleable “feel good” aspect involved. Just what is a person with MS to think or do?

Sorry if appear negative here, it is not usually my style. I generally try to be so positive that I am occasionally accused of being in denial. I can only think that if I am in denial, how much worse is the condition of our nation.

AMF

Excellent points... I wonder why I can't find more topics like what you've mentioned around here. Why isn't anyone questioning the role of our infamous Big Pharma companies and the role they play on our governments, media and our own lives? I don't want to go against anyone in terms of their use for DMDs, not at all, but I wish these sorts of questions were asked. How do some feel about their role as pharmaceutical customers? How do they feel about taking certain drugs despite the negative sides to corporate pharmaceutical companies, and scams and what not? What sort of alternative treatments are available, and are there any that might seem plausible even if not pharmaceutical? Why do people take so many medications knowing that the Big Pharmas are making billions of dollars in revenue and yet never actually provide a cure...but there are alternative treatments by which others "claim" they have been "cured"? But then what about the more natural options provided in the same pharmacies or drug stores, claiming to do the same healing, yet not actually proven and also with mixed results?

Very confusing. Would love to hear from anyone and discuss the multiple arguments to these such issues...

It'd be really nice to know what your opinions are. I am not advocating against Big Pharma or taking DMDs necessarily, I'd just like to explore different points of view and arguments, for and against....

[AMFADVENTURES]

Hey Niko,
The recent demise of Lance Armstrong got me thinking about this very topic again. All you need to do is watch the evening news in the US. Three out of four advertisements during those shows are for drugs to control some malady you may never have known existed, much less that you obviously must suffer from (except during the "Silly Season" preceding political elections). How could anyone possibly be surprised to find out that the foremost cyclists in the world got there with the help of performance enhancing drugs. Drugs are a way of life here. We love our drugs, whatever we use them for, maladies real or imagined, recreation legal or otherwise and of course, convenience. I'm certainly guilty of using drugs for the convenience of not having to address certain health issues by modifying my diet and exercise regimen. We love our health care system too, they can treat almost anything - for a price, usually an exorbitant price - but more often than not, they do a pretty damn good job.

Healthcare costs in the US are expected to rise to 20% of the US GDP by the year 2021. That is a huge number and it has far reaching implications, most of which I’m sure I can’t imagine. But just off the top of my head, it seems a number like that might actually stimulate a sagging economy, even if it’s achieved at the expense of forcing individuals, corporations and government to spend. Think of the jobs it could create, the new businesses, technologies, treatments, research and on and on and on, almost like another tech boom, only sort of fabricated. In fact, it would be interesting to compare the tech boom to the healthcare boom. It could be enlightening in terms of the outcome we might expect. For one reason or another, healthcare in America is a sacred cow. Did I mention that healthcare has THE largest lobby in the US?

As for you individually, IMHO, you are on the right track. Absorb as much information as you can from as many sources as possible, not just MS related sources. Keep a mental scattergram of the value of the information you collect as regards your MS. Keep an open mind, don’t rule out using a DMD just because you resent the way Big Pharma operates, the scientific evidence is there. It’s a continuous process, a commitment today doesn’t rule out a change tomorrow.

My own mental scattergram leans heavily toward controlling my MS with diet and exercise and that has worked well for me. My MS hasn’t been so aggressive that I’m willing to risk some of the side effects of available therapies. At the same time, I try to stay cognizant of the many different things bouncing around out there, particularly if they don’t involve much risk. I'd sure like to find a drug that would help both my MS and my cycling. Anybody know of one of those, I'm not worried about the USADA hitting me up with a doping charge?

Did you happen to see one of the shamans in Bali for help with your MS? Even if it didn’t work, it could be a hell of an experience!