Good deed, Bad medicine
Posted: 28 August 2012 08:24 AM   [ Ignore ]
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This story came across the wires a couple of days ago. Apparently Ty Warner who made billions as the owner of the company that made Beenie Babies stopped to ask directions from a woman who was attempting to raise $20,000 for medical treatment. He later came back and gave her a check for the full amount. This is clearly a very generous act. Unfortunately the woman is going over seas for an unproven stem cell treatment. The term “Stem Cells’ is the latest con game being played by shady doctors over seas and occasionally here at home.

The field holds great hope but very few treatments are actually tested and proven at this point and there have been some significant disappointments and dangers. It does however make a perfect tool for scammers. Treatment often involves injection of blood cells into the blood stream which in itself is not very complicated. There is much more to it than that but that is the only part that the patient sees. The really important stuff happens behind the scenes in how the cells are grown and treated but patients have no idea if the doctor providing treatment has any idea what he is doing in the lab. All they see is a doctor putting in an IV and infusion something draped in promises. Its easy enough for anyone with no scruples to set up an office, put on a suit, and weave a web of hope to these desperate patients.

The woman in this story is going “overseas” for stem cell treatment of chronic kidney disease. I’d never heard of any such treatment that had reached the stage where it could be offered as a legitimate option, but i researched it a bit and all thats been done so far are some rat studies. It would be one thing if she were being enrolled in a legitimate clinical trial but if that were the case she should not have to raise $20,000 since such trials are usually free of charge to the patient.

This poor woman is going to a scam artist for unproven and possibly dangerous therapy all aided and abetted by the altruism of a stranger. I guess its true that no good deed goes unpunished.

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Posted: 28 August 2012 10:41 AM   [ Ignore ]   [ # 1 ]
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Yes, stem cell therapies are one of the most popular areas for medical tourism. Organizations of stem cell researchers in the U.S., who are clearly positive about the potential of this therapy since they study it professionally, repeatedly caution people that it is not yet a legitimate clinical treatment they should seek out:

With a few exceptions—such as the use of bone-marrow haematopoietic cells to treat leukaemia—novel stem-cell therapies are often unproven in clinical trials. Even well-proven therapies can lead to tumour for­mation, tissue rejection, autoimmunity, permanent disability and death. The risks of unproven and unregulated therapies are potentially much worse…
Any medical innovation is ethically responsible when it is based on animal studies or other research that guarantee evidence of safety and clinical efficacy. Adequate measures must also be taken to protect patients from harm, such as clinical monitoring, follow-up, exclusion of indi­viduals who are likely to be harmed or are unlikely to benefit, use of only clinical-grade stem cells, careful attention to dosing strategies and informed consent.

A federal court recently affirmed that this therapy is a “drug” for the purposes of FDA regulation, so it is not legal to offer in the U.S.

Unfortunately, due to much looser regulation stem cell therapies are widely and legally available for veterinary patients despite no better evidence for safety and efficacy.

This story reminds me of the desperate people who have solicited contributions to be treated by Dr. Stanislaw Burzynski, paying for false hope and unfulfilled promises. A sad and infuriating manipulation of the vulnerable.

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Posted: 28 August 2012 01:03 PM   [ Ignore ]   [ # 2 ]
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The woman made her living doing Reiki. No surprise that she found another quack treatment for what ails her. Pity.

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Posted: 29 August 2012 09:33 AM   [ Ignore ]   [ # 3 ]
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I noticed that too. Its telling that she wold not divulge the name of the country she was going to for treatment. She promised to give that information once she returned from having her procedure. An update to the site now says it was done on Aug 19th but of course there is no comment yet on where it was done or what the outcome was. I will be interested to see if they follow up on the story since the treatment will almost assuredly fail.

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Posted: 31 August 2012 10:16 AM   [ Ignore ]   [ # 4 ]
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On the other hand…Big Pharma in the US most likely writes the laws and regulations for these drugs/therapies, just like the rest of the big lobbies do.  Just because the FDA says it’s bad doesn’t mean it is. It just means the Big Pharma companies haven’t yet figured out how to make big bucks off of it yet.  Or they haven’t completed price “negotiations”.  And all they have to do is get the FDA to play the fear card.

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Posted: 31 August 2012 11:59 AM   [ Ignore ]   [ # 5 ]
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CuthbertJ - 31 August 2012 10:16 AM

On the other hand…Big Pharma in the US most likely writes the laws and regulations for these drugs/therapies, just like the rest of the big lobbies do.  Just because the FDA says it’s bad doesn’t mean it is. It just means the Big Pharma companies haven’t yet figured out how to make big bucks off of it yet.  Or they haven’t completed price “negotiations”.  And all they have to do is get the FDA to play the fear card.

I think you misunderstood the problem. There are NO published studies on the safety or effectiveness of this treatment. Whoever is doing this is using these patients as guinea pigs and charging them for the privilege. There are very few details given here but it is unclear if proper informed consent was even given and if these patients understand the risks they are taking by using a treatment that has not gone through the usual clinical trials first.

Doctors with dubious records and questionable methods often use the argument that you put forth to defend their practices ie. that some sort of big pharma conspiracy is behind the reaction to their activities, but the fact is that anyone who doesn’t follow standard protocol for human drug trials should be looked at with great suspicion since their main motive certainly is not the patients best interest.

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