I have re-read Anne's post, aware that all she says is right, and trying to think of how patients who are progressing [most in advanced stages and feeling the urgency] can overcome such barriers. I was becoming enraged, thinking of all the people with money, misusing it, patronizing sick people. Well, that will drive you crazy in about 5 minutes. So I started thinking about what else to do or suggest. It came back to reading this e-patient white paper again. So just in case you haven't, I'm posting the link again.

We will have detractors; those who don't think we will ever pull this off. Those who focus on what we do wrong and not right. Stay the course and read Carey's signature line if you feel discouraged.

Here's the link for encouragement . THere are others like us.
http://www.e-patients.net/e-Patients_White_Paper.pdf

with encouragement,
paula