Hi,
I'm a little shy to weigh in all this stuff, because mainly what I have to contribute is some vague-ish opinions and right now I just don't have the personal energy to be involved at an organizing-activist level, and bless you forever on this board who are taking this on - but I read your comments and have a couple of my own...

I was concerned when I read the latest "warnings" emanating from the "study" of websites that offer various kinds of stem cell or cell therapies directly to the consumer. This "study" was published in Cell Stem Cell Magazine lately, and could apply to other innovative therapies as well. My concern is that while I think risks of offered therapies are especially important to be researched and disclosed, this warning point of view and the whole Cell Stem Summit planned for 2009 has a kind of condescending tone to it. No patient or consumer voices seem to be included in the article mentioned above, nor in the advance planning for the summit. Everyone else but, in fact.

And the "concern" seems to be that patients won't get false hope, but I repeat again, hope is only hope. It's not a promise. And I have a right to hold any hopes I want to, understanding that caveat emptor, as is true with every treatment that's out there. I also feel I should have a right to get information directly and make my own decisions about whether or not I want to risk my money and body, and whether or not I want to believe scientists and scientific works and/or products that are not US or UK-based. When they say they only want to protect the consumer from spending money on something that doesn't ultimately work or has dubious or "unproven" results - meaning that it didn't get funded by a company for the double-blind study that would prove it viable as a profit-maker - well, I've been doing that for years (CoQ10, etc.) (not to mention for approved stuff that turned out to be clearly harmful - Vioxx, etc etc)

So I guess my concern is that the flow of information be kept accessible, so I can make my own decisions and choices when I want to, and not have it be ultimately controlled by bodies with unclear agendas. Honestly, I don't get why people are so upset about entities that are offering cures that possibly earn high profits from very sick people when our entire scientific research is now based on that - if it doesn't seem profitable, chances are it won't be researched. It seems like there's anger and resentment out there at what a truly free market approach really means, which is that someone can offer me a treatment that US scientists and corporations don't control, and I can make my own decisions about it, if I want to.

I understand our doctors' positions, too - they're essentially backed into a corner, and can only recommend what's been sanctioned officially - so for them, forget working by informed intuition, or any kind of original thinking or innovative treatment. Insurance won't pay for it, their reputations will be threatened and so on. It's complicated. I was struck by the section of Monkees in the Middle where the one doctor had a strong feeling that the design of the catheter was a little off, but restrained himself from suggesting the improved one he had already designed - that could have made all the difference in the outcome of this trial - because he didn't want to seem self-interested. Yet that could have been very valuable insight that maybe was the nail for which the kingdom was lost.