The monster may be of our own making, but you will never get them to admit that. I believe you are right, having grown up very much unwilling to challenge authority, and certainly never arguing medicine with a physician, I had to grow very gray before I realized, and actually believed, that I could read as well as they could.

We must, as a unit, demand (politely) to be heard and further to be listened to. If none of us backs down, if we insist on saying our piece we will not continue to appear as lone difficult patients, but by raising the subjects we want addressed in multiple arenas by multiple individuals all over the world, what we are saying will take on a new character. The character of a concern of PwP, not just the complaint of a patient. There really is power in numbers and power is what will make the difference.

If they are stuck in a rut and we are stuck in a rut, then our focus needs to be unsticking both of us for our ultimate mutual benefit.