I'm not as sanguine as some about a council of federal employees who will determine which medical treatments are more effective. I understand something must be done about medical costs, but from the time I read plans for bringing the costs of chronic illnesses under control on both Clinton and Obama's websites, I've wondered if this isn't doublespeak for take-it-or-leave-it medicine.
Having been a professor of preventive medicine for many years and having had both cancer and Parkinson's disease, at first I felt it somewhat self-serving to write about this. My husband reminded me that it's self-serving for people to write about social security because they'll one day receive it. So here are a few cautionary thoughts.
When I heard David Axelrod speaking of the planned medical council on Meet The Press, his tone and words were not reassuring. He said "I think most Americans want us to do something about that," referring to medical treatment inefficiencies. I doubt very much that most Americans have a clear picture of what this council could mean for their future medical care. He added that the "council is going to be looking at best practices, at, at, at what, what is working and what isn't and, and making recommendations about how we proceed, particularly within the, the, the federal system."
I understand that David Axelrod is personally familiar with how difficult finding a cure for diseases can be and that is reassuring. But there are still dangers lurking here. One of them is that "best practices" can be seen as falling along a straight line or a within range. The former is dangerous.
Researchers are often quite distant from the patients they study. And many prefer it that way. If we are going to have a council of researchers who keep at arms' length from patients, who seek answers only or primarily for those whose symptoms fall neatly under the inner regions of the bell curve, the many diseases about which medical experts know very little (orphan diseases) and the patients who do not respond predictably will likely, as outliers, suffer unnecessarily.
My political antennae sense some potential seight of hand here. The intentions are likely good. But I've seen and served on research boards and bodies and I wouldn't want most of them deciding my children's future medical care options. Whenever patients are not part of the equation, because they muddle things, the results are skewed. And having spent years working with doctors as a researcher and partner in my own health care and that of those I love, I'm sensitive to the strong views held by many with the loudest voices.
Medicine is a very inexact science. No council can change that fact. It could easily become a smokescreen for clearing a treatment path down the center of major illnesses putting lives in jeopardy that might be saved with some common sense and flexibility. As annoying as patients themselves can be to researchers, if their voices are not heard even a well-meaning council will bring more harm than good.
Medical costs must come down. But as we've learned with business bailouts, better to do it right early on, to anticipate abuse, than to be digging our way out of a mess for years to come.
Dr. Reardon also blogs at bardscove.
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