When you have a poorly understood illness that is killing you you have two choices: pay out of pocket or die. It doesn't matter if your country has universal health care or not because treatments will not be covered until they go through a lengthy (decades) approval process. If your illness is controversial then it will be even longer.
It doesn't harm anyone to publish real healthcare prices. Please do not fight something that will harm no one. This will benefit some of the most neglected people in society.