Recently, I was interviewed on Fox 2 news about a new ALS drug called edaravone. Edaravone is the first drug to be approved for ALS in 22 years. In a small study in Japan containing just 137 people, it showed a 33% slowing of progression. Only half of the 137 people actually got the drug. It is not a cure. While any progress is good and I am grateful for the efforts being made, I think it best for one to be very realistic.
The reporter was Dan Gray. They called me down to SLU hospital to get a patient’s view of the situation. The first, and main question for me as a patient with ALS was “how do I feel about the new drug?”
I tried to keep my answer as soundbite short as possible. I said that in a disease with so much treatment failure, one learns to be cautious not to get your hopes too high or else you live your life on an emotional rollercoaster. Adding to this is a big kicker. The drug requires weeks of daily hospital infusions. I would go from riding my bicycle in the woods every day with my fiance and friends to partially living at a hospital downtown. 33% slowing is good. The trade off for that possible slowing is pretty sobering thing to consider.
Dan Gray must have been thinking. “Who the hell got me the wrong person? I want a feel good “I am so stoked!” dancing for joy story”. You can’t hire good help these days.
Not having enough time to get the right patient in, Fox 2 just cut out everything having to do with the real answer and just strung together every statement I made about how I like to ride my bike in the woods, which I do.
I don’t think that they made me look bad, it was a cute looking bit. What upset me was the reinforcement of the fact that television news is for entertainment purposes only.