slayadragon
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>Of all the problematic ways in which the CAA has acted toward patients throughout its history, this may be the most cynically manipulative move yet. Those “advocates” understand how much it costs people with this disease to attempt to act on their own behalf. They know how demoralized this community is after having its hopes of a cure ripped away from it. They know how hard it is for people who have lost so much of themselves to believe that anything that they might do could have a positive result.
>But the underlying truth here is that both the government and the CAA care tremendously about the opinions of patients. If the patient community as well as specialist physicians remain firmly opposed to this, it will make it very difficult for them to move forward.
>This is the reason that the CAA is putting so much effort into trying to manipulate patient opinions about the IOM study — because patient opinions matter. And that gives patients much more power than most of them realize.
>The other truth here is that even if the IOM committee ends up going through (which, despite what the CAA says, is by no means a sure thing at this point), the best way for patients to influence what happens on that committee is to fight against it every step of the way.
If patients agree that IOM has the power and cooperate with their efforts, then the committee will be able to say that they took patient wishes into consideration — while at the same time doing whatever they please.
>On the other hand, if patients continue to insist that the IOM is going to come up with an inappropriate definition and that we are going to be mad as hell about it when they do, IOM will be under much more pressure to include our experts on the committee and to not stray as far from the Canadian Consensus Criteria (CCC) in their recommendations.
http://paradigmchange.me/wp/?p=208
>But the underlying truth here is that both the government and the CAA care tremendously about the opinions of patients. If the patient community as well as specialist physicians remain firmly opposed to this, it will make it very difficult for them to move forward.
>This is the reason that the CAA is putting so much effort into trying to manipulate patient opinions about the IOM study — because patient opinions matter. And that gives patients much more power than most of them realize.
>The other truth here is that even if the IOM committee ends up going through (which, despite what the CAA says, is by no means a sure thing at this point), the best way for patients to influence what happens on that committee is to fight against it every step of the way.
If patients agree that IOM has the power and cooperate with their efforts, then the committee will be able to say that they took patient wishes into consideration — while at the same time doing whatever they please.
>On the other hand, if patients continue to insist that the IOM is going to come up with an inappropriate definition and that we are going to be mad as hell about it when they do, IOM will be under much more pressure to include our experts on the committee and to not stray as far from the Canadian Consensus Criteria (CCC) in their recommendations.
http://paradigmchange.me/wp/?p=208