"So What's the Story?"
I opened up the newspaper the other day, eager to see the article that I had been interviewed for (http://www.theglobeandmail.com/life/health-and-fitness/health/online-gateway-pairs-parkinsons-patients-with-clinical-trials/article4270614/) ; mostly anxious to see which picture from the photo shoot they chose. (I’ve always been leery of a copy editor’s choice in this area and overly critical of my own “Parkinson’s stare”). A sigh of relief - the picture that greeted me wasn’t too bad but as my eyes skimmed through the article, my relief changed to disbelief.
As a member of their Patient Council, I had been asked by the Fox Foundation to speak with a reporter about Fox Trial Finder, an innovative tool used to bridge the gap between researchers and patients which is a major barrier when it comes to clinical trial recruitment. My disbelief eventually changed to anger. I felt duped. I was never told that the content of the article would be directed in what I felt was a negative direction. I turned to my computer to try and give words to my growing disappointment. This is what I wrote.
“As a physician, advocate, patient educator and someone who has lived with the challenge of Parkinson’s Disease for over 14 years, I am deeply disappointed with the journalistic angle this story has taken. If I had known the one-sided direction that this article would present, I would never have agreed to be part of it or at least would have been able to refute some of the implications made. Instead I was told that it would be a piece on the difficulties of trial recruitment, a real issue that is very concerning and needs to be brought to public attention.How significant are recruitment issues? The article fails to point out that 85% of all clinical trials are delayed by recruitment problems and that a staggering 30% of studies fail to recruit a single subject. What a huge waste of resources, not to mention time. Time. That means for those of us that are suffering with life-altering disease, even more time without better treatments and the cure we desperately need. More time struggling with daily disability, more time not living to our full potential, more time living with the burden of our disease. What this article also fails to mention is the rigorous ethical review that all studies must endure and the strict and unyielding government guidelines that must be followed to ensure participant safety. The implication that patients are somehow are coerced to participate in clinical trials should not be generalized. In all cases every patient must give informed consent and is per protocol, encouraged to discuss and ask questions not only with the study coordinator or the investigators and medical professionals involved, but also their own physicians. I myself when in clinical practice (before the Parkinson’s took away my career as a family physician) spent many hours discussing the pros and cons of potential studies patients brought to my attention, helping them to decide whether a trial was appropriate for them.In this case, which is the only situation I can speak for, it is unjust to insinuate that the Fox Trial Finder is somehow motivated by profit. The motivation behind this endeavor is only to bridge the gap between patients and the research community, a barrier that results in significant delays in the development of new and better treatments. There is much exciting research going on globally but that research cannot be translated into treatments that will benefit patients unless clinical trials are filled and we work together to promote and support our scientists. The Michael J. Fox Foundation saw this need and developed this innovative tool to address this concern. They are in business to put themselves out of business, to have a reason not to be in existence and from personal experience I know that the search for the cure, not profit, is the driving force behind their efforts.Ultimately it is unfortunate that this biased point of view was presented in the context of Fox Trial Finder and that it may in fact discourage participation in the clinical trials. Without trial participation, better treatments and a cure will remain elusive which means for those of us waiting for medical breakthroughs, there will be many more difficult days ahead."
A mouthful indeed but I was angry at being associated with what I felt was a biased article, embarrassed that perhaps its sentiments would somehow be mistaken as my own. I didn’t end up sending this rebuttal but instead posted an abbreviated and much more politically correct one instead. This unfortunately is not my only negative experience but it is my most recent.
Now I must not repeat that which I have just so vocally criticized and end with such a one-sided perspective. The media can also be a tremendously influential and supportive vehicle for any cause. The article that was published in a different newspaper the week before presented the facts in a balanced manner and there was actually a significant rise in registration to Fox Trial Finder in the days following its publication (http://www.thestar.com/living/health/article/1210595--michael-j-fox-launches-web-site-that-connects-volunteers-to-clinical-trials) . And over the years I have met many journalists whose motivation is to help disseminate information for a worthy cause, who work hard to present a balanced perspective. My respect and gratitude goes to them because undoubtedly they have been instrumental in increasing public awareness, thereby accelerating the funding and participation needed to find a cure for this disease and help many other causes.
Overall I am not jaded and I believe that there truly is integrity in journalism, that the media recognizes its power and influence and in general, is motivated to help a worthy cause, not hinder it. Perhaps I’m naïve. I just hope that in the future as I continue my mission to raise public awareness, that I somehow avoid becoming a casualty for those that are exceptions to this rule.
Like Fox, Soania Mathur's first instinct upon diagnosis was to hide her disease. She was 26, pregnant with her first child, and just beginning…