['lizbeth]

Phil,

It was a shocking experience to become a cancer patient. The cancer diagnosis was the least of my problems. Being a "good" patient was the most difficult. I hadn't a clue about "Standard of Care". I hadn't a clue about clinical trials and how they worked. When I started reading the results of different studies and showed up at my oncologists asking about them. Whoa, was I ever in deep shit. Any time I try to get more educated involved with my own care I get scolded for 'trying to be my own doctor".

Even doctors talk about their experience when becoming a patient. They may be experts in their own area - but upon becoming a patient they are treated differently, as second class. Any prior knowledge or expertise seems discounted.

So excluding Stage IV survivors from the very process that could save their lives - who is the system truly helping? You are right Phil, we need patient advocates. The medical community, the pharmaceutical companies, the FDA are all currently earning money from the way the system works. The patient has been minimized. Well, we can't possibly understand what is good for us, right? We need someone else to tell us, or so the ones who are currently in charge of modern medicine would like us to believe.

And yet, if the system was changed, everyone could still profit. And the patients who will lose their lives with the current system could be saved. Why do we sacrifice the most vulnerable? For the integrity of the data? Heaven help us, such an advanced society should be able to design a more compassionate system.