Quote:
Originally Posted by lindylanka
Laura,
You are probably right about smoke and mirrors, which is why i feel that it is of paramount importance that we find out how levodopa/carbidopa is classified. If it is not listed as an essential drug it should be. There is nothing at present in the pipeline that is as versatile as the simple 100/25 tablet that can be combined with other things to give maximum benefit - despite all the bad press.
In the meantime affirmative action needs to be taken on this, and that can only be done by dealing with the people who make decisions on our behalf, in the right way.
If approaching the right people takes time, effort and clear-sightedness, that's all right, it is something that patients CAN do.
What we do not need now is lots of angry patients, that way we will be written off. It will push us much further from the table we wish to be at.
I simply so not see how anyone can take legal action on something that has not yet happened.
Lindy
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Lindy,
I'm on your side too! I see both side of this I guess in that I understand the anger of patients who feel manipulated and let down along with the fact that we need to focus on being methodical, rational...in other words work to find answers without being overly emotional. I honestly don't think we could file a suit based on what we have right now- I basically was supporting what I see as Paula's fighting spirit; I guess I wasn't taking her literally? Hmmm...maybe I should have -
I am definitely not letting the PD orgs off the hook. I expect very little from pharma but not groups whose raison d'etre is PWP centered in advocacy and information sharing. Maybe I' m off base here, but as a newly diagnosed PWP, I looked to those groups and wondered which I should join based on who best represented all of us-I never have sussed that out. This lack of representation is largely what brought me to Neurotalk and to the PD Pipeline. In the end,I have found all of you and for that I am most grateful.
Laura