ALS could be the theme of an entire class in medical ethics. Its patients face so many complicated decisions and challenges.
The wish of Mr. Phebus makes spectacular press and got the term "Lou Gehrig's Disease" on major networks. That doesn't happen every day.
Where are our national awareness organizations? We understand that this isn't the context that you would prefer for a discussion of ALS, but how can you pass up this opportunity to talk to FoxNews and CNN about the disease itself? The stories obviously grabbed some statistics from some "authority" (max 20K patients?). Could the media not have used more information about how we suspect that there may be many more cases of ALS in the United States and should know when the registry is implemented. That would be nice to hear on national television, especially since both CNN and the CDC are headquartered in the same city. How about talking about all of the end-of-life decisions that people are forced to make in relatively short periods of time? How about explaining how technology and support systems and informed healthcare professionals who understand ALS make a big difference in those decisions. How about explaining some of the emotional aspects of ALS that take PALS on a roller coaster while they try to make good decisions? How about explaining how thousands of Americans facing the ticking ALS clock are trying to figure out how to give their lives a good finish? How about explaining whether organs from PALS and from families of PALS are even accepted for transplantation? How about using your bully pulpit? How about speaking up? How about raising awareness of ALS in a situation that isn't beautiful but certainly sheds light on the disease? The big network cameras were rolling. The subject was ALS. We expect you to show up and speak up and explain the disease to the world.
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