Doctors in the United States practice the best medicine in the world, to which I say, when they are finished practicing, let’s see if they can do it for real. According to the Commonwealth Fund, our healthcare system is the costliest in the world. Yet the quality of care ranks last among major industrial powers in the world.
I think we have known that sad fact for a while. I wonder how those of us with progressive chronic illnesses evaluate the ammunition in the holsters of doctors. Can physicians hit the broad side of a barn with whatever they are firing? My progressive MS long has had the best and brightest shooting blanks. My doctors are good people without options.
Before the stem cell trial, I had abandoned the regular care of any neurologist. I grew weary of trying therapies intended for relapsing MS to see if they did any good. I went through all of them. The interferons did nothing to stop the progress of the illness. IV steroids offered mere moments of slightly enhanced muscle strength that had no lasting power and threatened bone density.
I embarked on a one-year regimen of chemotherapy, Cytoxan, and barely made it to six months. The stuff only wiped out my quality of life, making me constantly sick, weakening me and turning my hair white. I don’t much care about the hair, but I morphed into a fragile fellow who might take a tumble in a strong wind.
After the daily injections of another drug intended for RR MS, I moved to Tysabri, which had no effect, and then moved on to the oral agents. By now, I was adding up the bus fare spent crossing town for treatment and decided something had to give. And so I retired from my job as a professional patient, no letter of resignation needed. I quietly vanished.
Don’t get me wrong. I asked the docs to think outside the box (Good line, huh?). Physicians cannot be faulted for throwing everything they have at a disease. Sometimes it helps, they say. Usually it does not, I reply, but it sure beats doing nothing. Frustration knows no end, though I am hardly the only one in this position.
Chronic illnesses by definition are incurable. Often they can be managed, never visible in the rear view mirror. Expectations can be out of whack and highly unrealistic. We hope, therefore we are. Positive outcomes become elusive, but we must continue chasing them.
Too often, however, we expect better than we get, maybe because doctors do not communicate with us. We have to be our own advocates. Ask questions. Challenge doctors. Push hard. Who better to do that than the person in the hospital bed? We need to step up to the plate. The on-deck circle is empty. I would rather be treated in the USA than anywhere else, but I would like to be treated a little better.