The patient always get screwed

Stephen L. DeFelice, M.D.

April 20, 2012

If you’re presently or a future patient, are you aware that our health care system is designed to keep you as a patient with your disease or disability for a long time?

There’s talk about health care everywhere but are you aware that you, the patient, as in the past, has not been included in the discussions? Has Congress, the President’s Administration or high level medical organizations ever asked patients or potential future ones what they want and then what they can do to make it happen?

The questions are simple to predict. Patients would ask for the following. ‘I have my disease (or disability) and want to get rid of it” or “I’m healthy now and I don’t want to have any disease” or “We don’t want free hospitalization or free drugs. We just want to be healthy”.

In medicine we are dealing here with the prevention and treatment of disease to deliver what patients want. And how is this brought about? By the discovery of medical breakthroughs, including cures. Now hold on to your hats for you will find this difficult to both emotionally and intellectually swallow. Congress or any other body that I know of has never had a hearing on ways to establish a general innovative and productive medical discovery system! The inevitable conclusion is the patient is left out in the cold and what’s more unforgivable, nobody has told them this inexcusable omission.

In my recent post, I quote the former Commissioner of the FDA, Dr. Andrew von Eschenbach, who recently wrote an op-ed piece in the Wall Street Journal regarding medical discovery, “Breakthroughs for humans were and still are a long way off.”

In the same post I also referred to my book published in 1972, Drug Discovery; The Pending Crisis where I wrote, “Our present system of drug discovery is almost designed not to cure the great diseases that confront us. There is no doubt that many will be cured in the distant future, but it is unfortunate that many must wait.”

My constant theme is that medical discoveries are made by conducting clinical research or studies. For over a half a century we have and erected frustrating barriers to conduct such research. And, today, the patient has no rights to participate in a clinical study, and they don’t even know it.

That’s why doctornauts or physician volunteers for clinical research, where doctors can more easily participate in clinical studies, would lead to more potential therapies being tested and more breakthrough discoveries made in the near rather than the distant future.

Senator Bill Frist, a distinguished physician and former Majority Leader of the Senate,   understands the need to test more therapies and drafted the Doctornaut Act ( More about that later on.