Thursday, 21 April 2016

Dishonest Research Results

There was another article in the media today, another story of a breakthrough in ALS research. If you didn't see it, I can understand. Perhaps it was lost in the swathe of stories and articles about the death of Prince, the musician. The sad truth is that neither of these stories will have a significant impact on my life. I was never a fan of Prince, and buried in the article about this research breakthrough which might help prolong life in people with ALS was the tidbit that this research would likely take 10 years to produce a drug, if it actually works.

Prince is dead. It is a sad thing that anyone should lose their life at 57 years of age, whether he be a famous musician that most of us have heard, or a regularly schmuck like me, although I did make it farther along than he. I am sorry for the loss to his family and friends, sorry for the loss to the musical community.

I am also sorry that an article heralding a breakthrough in ALS research says it will take 10 years to produce a treatment from this research. The average ALS patient dies within 36 months of diagnosis. Fully 80% die within five years of diagnosis, and only 10% make it to 10 years and beyond. I am unlikely to be in that 10%, although this is a faint hope that I might make it to five years.

These articles announcing hope for the ALS community offer so little. I know that research takes time, but I have become substantially cynical about these research releases. I am convinced these articles blaring forth their triumphant successes are more about gaining additional research dollars than they are about significant breakthroughs. Unfortunately, in the process of raising money, these researchers raise hope, in a group that has so little to be hopeful about.

I am not saying we should not fund this research; we should. It is desperately needed for more than just ALS. There are a host of neurological disorders we can do little or nothing about. This research will help more than just me. It will help so many, in the future. But I get a little tired of it all, seeing people express hope, display wonder and excitement at the ability to potentially treat mice with ALS, but not people. At least not for another decade.

We need viable treatments, now. We need a cure, now. We need something to hope for today, not at some point in the future long past our foreseeable death. By all means, tell the stories and print the articles, but let's top burying the reality of timelines and mice somewhere deep inside. It's disingenuous, if not downright dishonest.

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