his research study. Specifically he is looking for individuals with broad, systemic infections that are unresponsive to normal treatment, or that can not be treated for some reason. Because the course of treatment itself has not been tried before, and it involves massive, but controlled, doses of pharmaceuticals that can be toxic, he is looking for cases that are very serious.” He paused, and looked down, then said quietly, “Actually, he is looking for terminal cases.”
The doctor looked up at me then and made eye contact again. “Listen, I don’t have anything better to offer and this is at least a chance. You don’t have to go to Toronto. His team has sent me their treatment materials and testing protocols, and you can stay here in Vancouver. I will monitor your progress and send them reports. It looks like there might be side effects from this treatment regimen. It might even accelerate your decline. On the other hand, it is the only thing that I can see that might make a dent in your problem. I took the liberty of sending him copies of your medical records, and he has already told me that you are an acceptable candidate to be in the study if you agree.”
Science makes progress and often comes to the rescue in times of need. I thought of Max Theiler, who discovered the cause of the deadly disease, yellow fever, which is transmitted by mosquitoes and was a major killer in tropical areas and around port cities. In the 1920s, Theiler was working nonstop on his research because he, like me, was also working under a death sentence. In his case it was diabetes, which at that time was untreatable and usually ultimately fatal. However, Frederick Banting and Charles Best discovered insulin as a treatment, just in the nick of time. Theiler became one of the early recipients of this new cure while it was still considered experimental and potentially dangerous. He took this experimental drug as part of an unproven treatment regimen, and ultimately lived to receive the Nobel Prize for his work on yellow fever some thirty years later. Perhaps, as in Theiler’s case, I too might get lucky.
My enrollment in the research project first required that I sign a long, involved consent form, typical of those used in most medical research. I had to indicate that I understood that the procedures used might not cure me, that I might be placed into a “control group” that received placebos rather than active drugs, that there might be side effects, that if I died (even if the cause of death could be traced back to the nature of the treatment), the researchers could not be sued because I had agreed to this process. I had to agree that I understood and consented to the fact that the specifics of the treatment, drugs, and procedures would not be indicated to me in advance. Lovely—I was signing away the rights to my body and they weren’t even going to tell me what they were doing.
My treatment took me to the clinic on a regular basis for administration of the drugs and testing. I was given a checklist to indicate any side effects, of which I had a ton, including nausea, headaches, diarrhea, ringing in my ears, and occasional dizziness, but they usually became tolerable enough for me to continue living “normally” a few hours, or at most a day, after each treatment. I had to tough my way through the discomfort without knowing if it would be worth the effort, since I had also been warned that it might be several months before they knew if the treatment was working. Actually, the side effects were comforting because they confirmed that I was getting the actual treatment, not the placebo that the “control group” was getting.
At least 4 months after I’d started the experimental procedure, on one of my office visits, my doctor entered carrying an envelope that looked suspiciously like the one that had contained the consent form, but when he pulled out a small sheaf of papers, he smiled. That was the first smile that I had seen
The doctor looked up at me then and made eye contact again. “Listen, I don’t have anything better to offer and this is at least a chance. You don’t have to go to Toronto. His team has sent me their treatment materials and testing protocols, and you can stay here in Vancouver. I will monitor your progress and send them reports. It looks like there might be side effects from this treatment regimen. It might even accelerate your decline. On the other hand, it is the only thing that I can see that might make a dent in your problem. I took the liberty of sending him copies of your medical records, and he has already told me that you are an acceptable candidate to be in the study if you agree.”
Science makes progress and often comes to the rescue in times of need. I thought of Max Theiler, who discovered the cause of the deadly disease, yellow fever, which is transmitted by mosquitoes and was a major killer in tropical areas and around port cities. In the 1920s, Theiler was working nonstop on his research because he, like me, was also working under a death sentence. In his case it was diabetes, which at that time was untreatable and usually ultimately fatal. However, Frederick Banting and Charles Best discovered insulin as a treatment, just in the nick of time. Theiler became one of the early recipients of this new cure while it was still considered experimental and potentially dangerous. He took this experimental drug as part of an unproven treatment regimen, and ultimately lived to receive the Nobel Prize for his work on yellow fever some thirty years later. Perhaps, as in Theiler’s case, I too might get lucky.
My enrollment in the research project first required that I sign a long, involved consent form, typical of those used in most medical research. I had to indicate that I understood that the procedures used might not cure me, that I might be placed into a “control group” that received placebos rather than active drugs, that there might be side effects, that if I died (even if the cause of death could be traced back to the nature of the treatment), the researchers could not be sued because I had agreed to this process. I had to agree that I understood and consented to the fact that the specifics of the treatment, drugs, and procedures would not be indicated to me in advance. Lovely—I was signing away the rights to my body and they weren’t even going to tell me what they were doing.
My treatment took me to the clinic on a regular basis for administration of the drugs and testing. I was given a checklist to indicate any side effects, of which I had a ton, including nausea, headaches, diarrhea, ringing in my ears, and occasional dizziness, but they usually became tolerable enough for me to continue living “normally” a few hours, or at most a day, after each treatment. I had to tough my way through the discomfort without knowing if it would be worth the effort, since I had also been warned that it might be several months before they knew if the treatment was working. Actually, the side effects were comforting because they confirmed that I was getting the actual treatment, not the placebo that the “control group” was getting.
At least 4 months after I’d started the experimental procedure, on one of my office visits, my doctor entered carrying an envelope that looked suspiciously like the one that had contained the consent form, but when he pulled out a small sheaf of papers, he smiled. That was the first smile that I had seen
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