Understanding the motivation of a Huntington's Disease Advocate
I never pictured myself as an advocate for anything. I'm not politically motivated, nor am I active in politics. I was never one to volunteer to collect for cancer or any other disease for that matter. Instead, I was like most people trudging along, trying to make ends meet, enjoying my family and friends always striving for something better, celebrating life's ups and enduring life's downs.
I became a bit jaded shortly after hearing and reading about Huntington's Disease back in 1999-2000. I had been reading about how a particular scientist in British Columbia had stopped HD in a mouse model, and I remember thinking about how magnificent it was and that soon there would be a cure for my wife whom I was sure had the disease. I was so sure of it that I allowed her to live in denial and accepted her decision not to be tested for the dreaded disease. But I was happy since I felt that this was not only hope but a certainty.
As the years wore on, the discovery that I had read about seemed to disappear, and many more discoveries would arise only to fade away. My hopes faded with them, and my mind gradually came to a place, a dark place of acceptance that was first recognized by a profound sense of disappointment that my hopes were deemed as nothing but something to tear down and trample on. I have heard this same sentiment in many people over the past few years. They too had succumbed to hopelessness after having their hopes dashed too many times by the what seems to be the research community and the pharmaceutical industry and even those that profess to be at the pinnacle of advocacy for the Huntington's community.
My advocacy has been simple and honest. I never wanted recognition nor financial reward. All that I ever wanted was healing for myself, and I received that. I received that from many in the community who call me in the middle of the night in crisis for someone to talk to. A stranger, removed from their situation, sometimes thousands of miles away. I am that guy you know that you can call anytime and you do. I keep track. In 2017, I received 158 calls from people that I do not know in the HD community who simply wish to talk to someone who might understand their fears and grief and most disturbingly for many, their lack of hope. You would think that this would be depressing work, but I don't find it as such. Instead, I found that helping people sustained me and actually helped me discover how my hope could be sustained.
I hadn't really thought about my evolution until a gentleman messaged me whom I knew to have a similar experience to mine, and he mentioned how he had lost all hope for his wife. The message was short and at the same time very dark as this man had been one of the most upbeat people I had ever seen. I came to realize that he was succumbing to what I had years before. I follow his, as well as his wife's journey and realized that he had just had a major change in his life with his wife and that he was having difficulty handling the implications of that change. It's a normal but heart-wrenching reaction that we as humans experience when negative changes happen to those we love. The one thing that we both shared though? False hope or wishful thinking.
A recent article that I wrote for WeHaveAFace Global Times brought all of these feelings to the forefront for me personally.
In December 2017 we all received information that the Phase 1/2 trial of IONIS HTTRx had successfully reduced the mutant huntingtin protein in humans. It was heralded as a huge breakthrough, and we were all overjoyed, and although I was cautiously optimistic, I secreted myself to the nearest pub and celebrated by myself with a pint of a local brew. I wanted more but decided to leave and visit my wife and let her celebrate with a drink of rum...together.
It soon became apparent that very little information had been released and that there were important questions that needed answers and many people were now looking at the breakthrough as a cure rather than a possible treatment for the underlying causes of Huntington's Disease. This caused me great concern since I knew how many would react once they found out the truth, even if the drug eventually proves to be of use to some.
My concern only deepened when I began to see articles about a study that concluded that we need to rethink how we look at HD in particular, when does it begin and that the problem may not be that those that suffer from the disease produce too much protein but that they may not produce enough. This makes me wonder why we would want to block it and is it possible this new IONIS drug could cause more harm than good?
Let me make myself clear. I want the IONIS drug to work. I want it to work for us all.
All of this came to a head when I started to ask questions to a high profile individual in the HD community. He was aware of the article I had written on the subject which was basically a condensed version of the original. My article was deliberately written to be easily understood by anyone who took the time to read it. This individual, however, was not happy with it. He said the study was irrelevant, dangerous and that it was irresponsible of me to circulate it. There was a lot more said by this individual through email and to me on Twitter, but you get the drift, it was all negative. This study came from Rockefeller University.
It's relevancy I will leave up to the scientists. I am not one, nor am I a doctor. What I am is an advocate...and a good one. What is dangerous and irresponsible is criticizing the findings of scientific studies that he admits were similarly replicated in the past while touting the IONIS study which has yet to release detailed findings. And what is also dangerous and irresponsible is building up hopes in the HD community that has endured a barrage of failed studies for many years only to have their hopes smashed to pieces.
My gut tells me that this has to do with money. It always does. Some people can put a price on a group of people but I can't. The HD community is worth more than that.
Disclaimer: The opinions expressed in this article may or may not reflect those of WeHaveAFace.