Hi
I was asked to participate in this study. I decided against it because I’d rather get back to as normal of a life as possible right now post-op and not worry about whether I would end up with a bad reaction to a drug in testing.
fully understandable ...
I would hard pressed to believe that the chairman of cardiology at the Cleveland Clinic would be leading a study with bias to pad the pockets of big pharma.
well actually that's pretty much exactly what part of his role is. It is to (subject to ethics considerations) seek out any study which will bring research funding into his organisation. Hospitals like Cleveland are research hospitals. While he may have some questions about is this a warfarin replacement (which nobody is suggesting it is) he may indeed be very pleased to have a warfarin suppliment for reasons like patient compliance and testing.
It certainly seems that most people on this board are more proactive about their warfarin management and play a more active role in their personal care, but for the large amounts of valve patients who don’t have the will or means to do so these sorts of advancements could be life savers.
well personally I think being proactive and dilligent in managing the drug which we need to ensure good health is a bad thing.
Exactly as yo usay however there are some patients who (perhaps infirm, perhaps even mentally incapable, perhaps even stuck in a pernicious system which mis manages them and badgers them to not leave it) who would be benefited from a new drug which fulfilled the promises of no side effects, no testing needed and doing a good job of preventing thrombosis.
Equally though there is the wider world than the USA participating on this forum and many of us (even some American Citizens) are just out of pocket for everything. Actually (having read here) that can also be a good thing, because it also brings freedom. For instance I'm an Australian and fully free to self test and self administer. At first my Dr was involved (he writes the prescriptions after all) but it didn't take much for him to see that I was doing a better job than the Clinics.
Self testing also brings with it a freedom to travel, and depending on where you are in your life being free to pack up and go to Finland with no return date needed is valuable, nay liberating. There are others I know who are often travelling for their work (still in their 40's) and self testing is just a small thing to pack in their bag.
Sure, its possible that the drug under evaluation here will work better in the day to day (for years and years) for the patient, but we just don't know yet. Meantime there are still people working with warfarin and who will perhaps feel that the price of warfarin and testing is lower than a new drug.
Still, all this is premature because it has not yet completed trials, nor has it been approved.
All I see in this thread is a number of us old hands expressing "we don't mind the way it is" and other people getting unhappy with that. Research is good and welcome, but I don't place advance bets on the outcomes especially when the existing system serves me well.
Lastly unlike yourself I make a significant effort to stick around (no judgement, just obvervation) to actually provide practical help to people who are bound to manage their INR. I know those people have benefited from my assistance in a tangible way, not just a "emotinallly supportive" way. Not that
both aren't needed, its just I'm more a practical man than a
hugger.
