Hi All -
I think that this is an extremely important topic that should not be political in any way. Just the facts. Brenda mentions "comparative effectiveness" and I want to understand more about the pro's and con's of this and other potential changes.
As a 53 year old - 3 time BC warrior fighting for 20 years (so far)- I am presently Stage IV - I don't want to be lost in the fine print (not saying that I am but ...). My life is good even though it is a constant roller coaster ride.
Every action has unintended consequences of which many could be prevented if they are surfaced in advance and better understood. Here are some of my questions: Is there is some kind of cost benefit ratio that is equated to a survival time? If so then does that mean that my (really expensive chemo) may be too expensive to justify usage just to gain a few months (at a time)? Does it mean that I may not be able to benefit from the "off label" treatments and expensive chemo that will not cure me (although I always secretly hope and pray that it will). Each treatment has lasted about 4 months and it is very expensive - but those 4 month periods have added up to 3 years so far. Could it mean that there would be a limited number of treatments offered once you are considered metastatic? What about compassionate use of trial medicines for patients who have exhausted conventional therapy but due to being heavily treated are ineligible for promising trial drugs? Are there any changes being looked at to address this issue? These are some of the issues of concern to me.
I know that we have many brilliant minds on this board and this topic does not need to be political. Please try to look beyond political beliefs or the appearance of political slant in addressing this issue if anyone is doing that.
Love, Hope, Peace - Carolyn
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