Andrew
Senior Member
- Messages
- 2,517
- Location
- Los Angeles, USA
I have a question for the CAA. You say you are no longer in the patient advocacy business, and are strictly a scientific research organization. In light of this, I want to know if you are willing to refrain from involving yourself in patient advocacy issues. For example, if you are asked to comment on a policy issue that affects patients, are you willing to tell them that you don't speak for patients rights or any political, social, or legal issues relating to patients, and because of his you won't comment? And are you willing to refuse invitations to any conference or meeting that deals specifically with these types of issues?
I ask for a specific reason. I was thinking of contacting congress people about a name change, but past history tells me that they will probably double check with you (because you are so visible) and you will tell them not to change the name. And then all my efforts will be pointless.
If you really are refraining from involving yourself in the political and social issues, can I trust you to keep your word? Will you stay out of our way when we try to make what we see as positive changes for patients?
I ask for a specific reason. I was thinking of contacting congress people about a name change, but past history tells me that they will probably double check with you (because you are so visible) and you will tell them not to change the name. And then all my efforts will be pointless.
If you really are refraining from involving yourself in the political and social issues, can I trust you to keep your word? Will you stay out of our way when we try to make what we see as positive changes for patients?