Sheryl, I absolutely agree with you re:

"Carey, I too have mulled the idea of having patient advocates "look at what the orgs do in total: the good and the bad. Maybe put together a report on what each org does; the overlap; the original stuff." This can never happen, however, because ultimately the patients will lose if we go public with this sort of info. It will remain "a dirty little secret" because if we question how the orgs are using the funds they raise, big donors will be less likely to contribute, and then where will we be? We are between a rock and a hard place, just as we are when we have to choose a treatment course. Our lives and millions of others hang in the balance."

And believe me, I thought twice about saying what I've said already in this thread in a public forum. But I think it is a conversation we should be having, and I'm glad Todd opened the dam.

However, I also believe that the orgs should not be publicly shamed with damaging information, or coerced into complying. It won't work, as you stated, and if it did, it is not a productive way to get what we want. Going public with unpleasant financial details is not the way to go. But it doesn't hurt for the orgs to know that we understand in a meaningful way that the current setup squanders money and our future, and that perhaps collaboration would be best for everyone. I'm wondering if the organizations know that patients are even thinking about this stuff.

I'm not advocating the destruction of anything, rather seeking to illuminate the situation, and thinking about ways to solve the problem fractionalization poses short of an actual merger. Ways they could be working together on a project by project basis to leverage their power on behalf of the patient.

I think the value of some sort of patient panel lies in its ability to articulate the needs of the orgs most important constituency. Our voice now is lost among all of the other power players. Although patient frustration is a negative emotion, it is what is motivating us to speak out. The result we seek, though, is positive action on all fronts from those who are already mobilized in our service - the organizations. I think it would be generally positive if patients who care about this and who are in a position to influence, start to have a conversation about what is possible. I think of it kind of as a constitutional right; freedom of assembly or some such nonsense.

But you are right; we've got to move that rock that's squeezing us in a manner that doesn't destroy. Hopefully it can be done with logical persuasion and good will. Am I too optimistic?