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Out of Order: Having words
November 2013
by Randall Willis  |  Email the author
EDIT CONNECT
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One of the benefits of having worked in some form of the communications industry for almost 20 years is I now feel like I can talk to just about anyone.
 
My degrees in molecular biology and biochemistry—don’t judge me, man; it was the 1980s, we all experimented—allow me to more than hold my own in conversations about melting curves, epigenetic signatures, liver enzyme levels and intent-to-treat populations. My almost-an-MBA—phew, that was a close one for Hopkins—and years in the business world mean I can converse freely on topics like ROI, branding, capital investments and the challenges of corporate culture following mergers and acquisitions.
 
Strangely, however, a life of general good health—knock on processed wood fibers—has meant that I am not in a great position to talk to patients and perhaps more broadly, people enduring chronic disease. This fact was brought home deeply and quite vehemently while sitting around a bonfire a couple of months back in Toronto’s West end.
 
While waiting for the fire to take hold, I overheard half of a phone conversation between a friend and an associate. My friend was quite agitated with what her friend was telling her. When I asked if everything was alright, she told me her friend had just been diagnosed with Crohn’s disease and was scheduled to start intravenous treatment with Remicade.
 
My friend, who herself suffers from ulcerative colitis, felt the prescription was BS and there was no way her friend should have to go to the hospital every couple of weeks to receive treatment. She felt the gastroenterologist had been too quick to prescribe such a measure when there are so many non-pharmaceutical options available, as she well knew because of her own experiences.
 
Having a very strong familiarity with biologics for autoimmune conditions, I started to caution her on what might be going on with her friend’s diagnosis and discuss the various options with her. A quick look at her eyes, however, informed me that this was not a time for rational conversation about pathophysiology and modes of action. Because of my friend’s personal history with inflammatory bowel disease, this was a very personal topic, not something to be handled clinically and impersonally.
 
It can be difficult at times, when discussing various aspects of the pharmaceutical and biotechnology industries, to remember that at the very base of the process is someone who is hurting and afraid. Not a patient population from a clinical trial who act in a statistical manner, but a single individual with his or her own experiences, biases and concerns.
 
What complicates this even further is that rarely does an individual patient experience a treatment in a truly binary manner—it either works or it doesn’t. Rather, treatment typically works to a greater or lesser extent, and so we often end up compounding symptoms with side effects. Is it any wonder so many patients feel like they are guinea pigs being transitioned from frying pan to fire and back again?
 
All this is to say we all need to be careful how dispassionate we are when discussing our pharmaceutical endeavors. While the individual patient—the man, woman or child suffering both the disease and its treatment—doesn’t have to be front and center of every discussion, they should never be far from there. Without them, we have no reason to do what we do. And more importantly, we would want to be treated with respect if we were in their shoes.
 
Willis is the features editor of DDNews. He has worked at both ends of the pharmaceutical industry, from basic research to marketing, and has written about biomedical science for almost two decades.  
 
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