In case Mr. Richard, the letter writer, is more than merely curious but, like many of us, is seeking some authority for hope, he may appreciate knowing that in traditional Judaism among the blessings recited three times every day is one which acknowledges that God “brings the dead to life.” The Talmud (Sanhedrin 91a) also records the following exchange: To a skeptic who asked, “If even the living die, shall the dead live?” Rabbi Gebiha son of Pesisa replied, “If what did not live lives now, surely what lives now will live again.”
This is a question concerning John Brizzolara’s article “I Feel My Liver Donor’s Presence” in the November 13 Reader. He’s talking about a liver-transplant patient, David Clark, and he quotes Mr. Clark on page 50, the second column, as saying, “I wasn’t real happy with the endgame part of the carrot on that particular episode.” It’s a very interesting story, but what does that sentence mean? Is it garbled or what? Would somebody please translate that?
The sentence should have read, “I wasn’t real happy with the endgame on that particular episode.” — Editor
The Clinical-Trials People
Elizabeth Marro is to be congratulated on the candor and perceptiveness of her article about human clinical trials (“Hi, Connie. We’re Ready for You,” Cover Story, November 13). This article has filled in the missing link with some information from the point of view of the clinical-trial subject that simply is not usually available to the primary investigator in such matters.
I am a medical doctor and psychiatrist and have been primary investigator in a number of clinical trials over the past 20 years. I have been serving as the primary investigator of a clinical trial of a natural substance for San Diego.
When I ran clinical trials of psychotropic drugs for a large Midwestern university, I believed with all my heart that clinical trials were of benefit to the drug company for the collection of powerful data to improve treatments, as well as of benefit to the patient. As I truly believed with all my heart, we were simply making available treatments that were not yet commercially available to treatment-resistant patients who were suffering. I noticed even then that a large amount of the patients whom we recruited were the uninsured and those who probably could not afford any care other than the clinical trial. I felt I was giving them a wonderful chance. I always felt, as I do in my current work, that patient health is paramount, that a patient must be pulled from a clinical trial if another treatment would be better. I knew that when I did such things at least some people were unhappy because they wouldn’t receive the full compensation for completing the trial. I thought it was just a different viewpoint. What I could not see then is that we are developing a separate subpopulation of people who do clinical trials. These are people who need compensation to live — compensation which may be directly proportional to the risks, even risk of death, that may accompany a clinical trial. Once there were a few “creative” people who would get an occasional clinical-trials job to get out of a scrape or, in the more famous case of El Mariachi director Robert Rodriguez, to finance a movie.
Now there is a body of citizens who use the clinical trial to make a living. Many people are against using animals in clinical research because they consider this cruelty. Recent data eloquently presented in the Reader by Elizabeth Marro establishes correctly that recent trials locally involving blood products may have been responsible for higher death rates and that some recent clinical studies in the United Kingdom have caused Europeans to revisit clinical-trials criteria.
My recent clinical work has been far removed from either universities or pharmaceutical companies. I have been clinically studying natural substances. Nobody involved with any of my interests has enough money to compensate patients.
I have received countless telephone calls from would-be patients who hang up when they learn I can offer only a minimal compensation for mileage.
If research on animals is inhumane, then research on humans can only be worse. There seem to be plenty of people in America who are genuinely dependent upon money received from clinical trials. Usually the clinical-trial protocols aren’t equipped with controls to detect people who deceive in order to evade dismissal or prolong their participation and earn more money. We are foolish to trust the veracity of the scientific data they provide.
We are inhuman in terms of our own ethics. We simply cannot let this practice continue. The USA, once the first country to have workable social programs, now obviously has inadequate ones for these people to even exist. We have review boards that check the ethics of practices of human research. Their power is restricted to interpretation of a series of criteria in a meticulous way. It is time to do something about the criteria. They have not been examined in the light of current social realities.
There is an amazing amount of knowledge streaming from high-quality science endorsing natural and nondrug treatments.
We cannot permit the clinical-trials establishment to be a weak and poor substitute for inadequate social programs.
We must stop the human experiments right now. Review the human ethics. We know plenty about how to heal people. Let us simply heal the people, without exposing them to risks in the name of commercial profit. This may present a problem for large institutions, like universities, which have allowed thousands of trials — run now more often by commercial organizations — to pay them. The bias is evident, but it is removable. There is plenty of good human clinical science, perhaps some older or less flashy, to teach healers how to cure patients. Only by letting go immediately of the clinical-research-money bias can educational institutions win the faith of a questioning, angered public.
Stop human clinical research, at least until all ethical guidelines are reviewed.