Bidding for a Grateful Patient.

Abstract

Bidding for a Grateful Patient Joel S. Perlmutter Patients and families frequently want to help support my research efforts, particularly when there is potential for discoveries that may translate to more effective clinical treatments. Support includes potential participation in research studies as well as financial support. Such donor financial support has huge advantages for me as an investigator. These funds can help support preliminary studies to determine whether some new research direction will be productive. These preliminary data form the critical base for a larger application to the National Institutes of Health. Almost all such submissions require such data to be competitive. Thus, these types of donations provide the “seed funds” to pursue new, innovative ideas. Given that background, one can see why the University Development Office wants to encourage interactions between clinician-scientists and potential patient donors. Of course, as a scientist, this aligns with my interests. Yet, as a clinician, I am somewhat reluctant to initiate these discussions with patients or families since I do not want that to intrude on the patient-physician relationship. In particular, I do not want to have any sense that I am coercing someone who depends upon me for care, nor do I want the patient to feel an obligation. Most particularly, I also want to avoid “reciprocity” in which the patient, their family, or my office feels an obligation to ask for or provide different care. Note that I state “different care” since I aim to provide all of my patients and families with “special and personalized care.” Thus, if a patient and family raises the question of support, I refer them to the development office. Well, I have not always followed this rule. Let me tell you a story of a different interaction that I still question. One Wednesday evening when finishing with the last patient of the day—it was about 8:30 pm—I had just completed the evaluation and discussion of treatment options with a man that I had treated for several years. His adult son, who had accompanied him on this visit, asked me about what was going on in my lab. I knew that it was late, but quite frankly, I rather enjoy talking about my work, so I did. I told them about a new drug that had been developed at Washington University by one of my colleagues, Laura Dugan, and we had just completed a study demonstrating that this drug can recover damage in the brain produced by a neurotoxin that causes an animal model of parkinsonism. Quite frankly, this was rather amazing since the treatment of Parkinson disease has only included symptomatic treatment and nothing slowed the relentless progression. The son then asked me about the next steps, and I explained that [End Page 7] I wanted to develop a measure of the action of this drug in the brain so that I could rationally know that if I extended this work to people with Parkinson disease, I could hit the target in the brain and with the appropriate dose. That evening he asked if I had time to meet with him on Friday morning before he left St. Louis to return home. I said fine, not really knowing anything about him or his family. I had assumed that perhaps he would donate $100 or so to help. But I could not pass up a chance to talk more about my work so we planned on a one hour meeting in two days. So, two days later the son walked into my research office, sat on the other side of my desk and he asked me some rather poignant questions. What were my goals of the research? How long would it take to collect enough preliminary data to submit a viable federal grant application? What was the value of the new methods that I wanted to develop if the drug that we had been testing failed to work in humans? Finally, how much money would this cost? I was not really prepared for that last question so I turned to my computer, pulled up a spreadsheet, quickly formulated a budget and said “about a million dollars.” To which he responded, “fine...