Carey, only time will tell whether you are too optimistic when you say,
"we've got to move that rock that's squeezing us in a manner that doesn't destroy. ...with logical persuasion and good will." One thing is for certain, if we don't try, it will NEVER happen.

It is my experience that people and organizations (made up of people) change only when they have a compelling reason to do so... the "what's in it for me" syndrome. Had the multiple orgs formed one last time around, many key people would have lost jobs, had income slashed, and lost power and prestige. What do we have to offer them to offset this? We need a business plan that spells out the benefits of what we want for all the groups involved.

The temporarily healthy, try as they may, will never understand the desperation of those of us living with a progressive, incurable disease... unless we happen to be their spouse, parent, child, etc. It is up to us to make our pain palpable to them rather than bear our burden in silence. Having patient advisory boards is great if they are consulted about issues that are really important and if their voice carries real weight. Rights are only meaningful if we exercise them and those in power are committed to defending them. This plays out in government every day.

Carey, the long and the short of my response is that patients cannot afford not to take our best shot, but we must tread carefully in the process.

sheryl