Oliver Sacks

This week the New York Times celebrated the acquisition by the New York Public Library of Sacks' archive. And last month The New Yorker published several of Sacks' letters describing his clinical observations that led to the book and movie Awakenings.

Dr. Sacks' powers of observation and communication were remarkable. He worked at a small hospital north of New York city at a time when many with chronic illnesses were "committed." In this environment, he observed those with a wide range of neurologic disorders and shared his clinical observations with the medical community and the lay public, largely through the books he wrote.

Whether fair or not, I think of Sacks as a medical version of Darwin, in that each used their skills to carefully describe things in plain sight that others failed to recognize as important and then integrate large volumes of information to make sense of the chaos for the rest of us. From Darwin we learned about evolution and how genetic and environmental forces combined to make some organisms (plants or animals) thrive and others disappear. From Sacks we learned about the biologic effects of neurologic diseases and disorders while also understanding the complexity of brain dysfunction - at least compared to heart or kidney dysfunction.

As an example, consider this wonderful summary from ereads about one of Sacks' most read books, The Man Who Mistook His Wife For A Hat.

"It stands to reason and to logic that if a man so happens to lose his eye or a limb of his, the man would, more or less, be aware that he has lost that particular eye or that particular limb. However, if a man so happens to lose his self or his sense of self, then that man will not and cannot know this, for he is not present anymore. In this awe-inducing and wonderfully written book, Sacks tells us of the many stories that he has of his many patients."

The one book of Sacks' that I've reread is Awakenings, which tells the story of how Sacks treats a group of catatonic patients with L-DOPA based on the recent discovery of its use in Parkinson's disease. The plight of these people, woken up for months - and one woman for many years - is horrifying and fantastic. We learn that the effects are generally short-lived, as if they are awakened to learn that that it is only temporary, with catanonia soon to return. Imagine their reaction when told their awakening was going to reverse.

I had a brief dialog with Dr. Sacks when I worked at the FDA. He was willing to help me with a question, though he preferred the dialog to be by fax.

I had attended a medical conference where an accomplished scientist spent his time telling the audience how terribly the FDA prevented life-saving therapies from getting to market.

He showed a video of a device that could completely reverse a movement disorder, and it was a very, very simple device. And he told the audience that getting this simple device to patients would cost hundreds of millions of dollars. Even though I knew that was an exaggeration, I also knew that if this device were capable of the impact shown on the video, it needed to be on the market. At the end of the presentation, I introduced myself to this scientist and invited him to engage. I would help him connect with the part of the FDA that would allow this device to move through testing as efficiently as possible, explaining to him that this was part of my job.

I arranged a call with him in the coming days, giving me time to share the video with colleagues at the FDA. They were intrigued and looked forward to the meeting with this scientist. But it was not enough. I realized I needed the insights of someone like Sacks. So I thought, why not Sacks? I knew something seemed "off" about this video, but couldn't figure out what.

The back and forth with Sacks was fantastic, partly because of who I was communicating with and partly because of how clear he was. After a few questions were answered, he delivered his opinion. The patient in the video did not suffer from the movement disorder claimed and the device did not appear likely to be responsible for the benefit for several reasons he shared.

During the follow up call with the scientist, I shared the observations from Sacks and the conversation stopped. The scientists was now uninterested in speaking further. I tried to reengage, to assure him that we'd take his work seriously and hoped he'd address Sacks' observations. But there was no response.

I made several attempts to reengage, directly and through others. But there was no response from the scientist. He ghosted me.

While I would not want to give the impression that the scientist shared false information, it was evident that Sacks had seen something others could not. And he gave me the feedback in a way that I could communicate it in a clear enough manner that it had "Sacks" impact. So perhaps he wasn't ghosting me - there was a reason.

Just as Awakenings is horrifying and fantastic, so was my Sacks engagement wonderful and frustrating. I saw how Sacks could see what others could not and communicate it the others could not. But I also experienced the disappointment that we were not seeing a simple device that could have major effect on people suffering with a movement disorder.

So we focus back from the failed hope of this simple device to the development of RB-190 f0r Parkinson's. From my experience with him, I bet that our robust data would have been enough to pique Sacks' curiosity.