Multiple vs single goals
I can see both sides on the issue of whether to have one demand at a time rather than a sequence (I think that's the choice we've got).
I don't know how to judge which is better because I don't know who the people on the receiving end of it (Congress?) would perceive a petition with a single goal vs one with multiple goals.
I suggest we ask someone (or several someones) who are on our side and know about this. Does anyone have a friendly politician in their circle? What about asking Llewellyn King?
Mention the IOM report vs not
We have several audiences for any demands that we make: (1) patients and supporters who we want to get behind our document; (2) the direct target (Congress, NIH, etc.); and (3) the general public, who we'd be trying to get interested via the media.
Apart from the NIH or other agencies who paid for the report, we can't assume that any of them have heard of the IOM report.
It's our big weapon and it's likely that only a tiny percentage of patients will hate the report so much that they won't be willing to use parts of it to their advantage (5%? 1%?). I think we'd lose far, far more support from patients by not using it than we'd gain, and we'd have far less impact on our other audiences. Undermining the report by saying 'some patients don't agree on recommendations that are irrelevant to the points we're making' makes absolutely no sense to me.
I'm concerned that an abstract principle of seeking to please all at the lowest possible common denominator is being placed above our actual goal: which is, to get our demands met.
Let's not have the 5% tail wag the 95% dog.
Project management
I agree with @alex3619 that we've got several stages of decision-making and it might be helpful to address them as they arise. I see them as:
1. Agree a list of demands and detail them out (so that we're not just asking for 'more funding' but specifying how much, what for, etc.).
2. Having seen what those demands are, see whether they best stand alone or as a group (and consulting with politicians or those who know how that works, including CFSAC reps, perhaps, would help).
3. Make a decision about citing the IOM report.
Just my view. Nothing is a 'deal-breaker' for me in terms of not being willing to sign a petition but at this stage I can't see myself putting any energy into a campaign that didn't use the IOM report to turbo-boost its chances of success.
I can see both sides on the issue of whether to have one demand at a time rather than a sequence (I think that's the choice we've got).
I don't know how to judge which is better because I don't know who the people on the receiving end of it (Congress?) would perceive a petition with a single goal vs one with multiple goals.
I suggest we ask someone (or several someones) who are on our side and know about this. Does anyone have a friendly politician in their circle? What about asking Llewellyn King?
Mention the IOM report vs not
We have several audiences for any demands that we make: (1) patients and supporters who we want to get behind our document; (2) the direct target (Congress, NIH, etc.); and (3) the general public, who we'd be trying to get interested via the media.
Apart from the NIH or other agencies who paid for the report, we can't assume that any of them have heard of the IOM report.
It's our big weapon and it's likely that only a tiny percentage of patients will hate the report so much that they won't be willing to use parts of it to their advantage (5%? 1%?). I think we'd lose far, far more support from patients by not using it than we'd gain, and we'd have far less impact on our other audiences. Undermining the report by saying 'some patients don't agree on recommendations that are irrelevant to the points we're making' makes absolutely no sense to me.
I'm concerned that an abstract principle of seeking to please all at the lowest possible common denominator is being placed above our actual goal: which is, to get our demands met.
Let's not have the 5% tail wag the 95% dog.
Project management
I agree with @alex3619 that we've got several stages of decision-making and it might be helpful to address them as they arise. I see them as:
1. Agree a list of demands and detail them out (so that we're not just asking for 'more funding' but specifying how much, what for, etc.).
2. Having seen what those demands are, see whether they best stand alone or as a group (and consulting with politicians or those who know how that works, including CFSAC reps, perhaps, would help).
3. Make a decision about citing the IOM report.
Just my view. Nothing is a 'deal-breaker' for me in terms of not being willing to sign a petition but at this stage I can't see myself putting any energy into a campaign that didn't use the IOM report to turbo-boost its chances of success.
Last edited: