Jun 17 • 11M

Chapter 3, Part 3: “Where are the stories about patients?”

This is Chapter 3, Part 3 of SMIRK, a serialized memoir about my relationship with "Pharma Bro" Martin Shkreli. This post is about patients affected by the Daraprim price hike.

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My experiences uncovering the story of, and falling in love with, Martin Shkreli.
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An illustration of a pill bottle. (By Shannon Loys)
An illustration of a pill bottle. (By Shannon Loys)

When Martin Shkreli’s Turing Pharmaceuticals purchased the rights to Daraprim — a decades-old parasite-killing compound known scientifically as pyrimethamine — and shockingly raised the price overnight from $13.50 to $750 per pill, public reaction was swift, loud, and unrelenting. Just three days after a story about the price increase appeared in The New York Times on Sept. 20, 2015, Martin’s impish visage became a global symbol of greed.

But what was really going on with patients who needed Daraprim? Were they really being forced to forego life-saving treatment because of the cost? Were people dying because of this?  It was hard to say exactly. While everyone seemingly had a scathing opinion to share about Martin and the drug price increase in news articles and on social media, a scant few of the speakers had any direct experience with trying to obtain the medication themselves.

Those questions were very much on my mind when I first started researching Martin’s story for a possible book back in 2017. Unfortunately, it was hit-or-miss trying to gather solid evidence. I made some efforts to reach out to doctors and patients, but got no replies. I wasn’t overly surprised: Doctors were often busy and patients were likely understandably interested in protecting their privacy.

One physician who had spoken out about the price increase, Dr. Judith Aberg, an AIDS and infectious disease specialist at New York’s Mount Sinai Hospital, did meet with me to discuss her concerns about the price hike. She also shared a dossier of about four dozen testimonials from doctors that had been posted on an internet message board (since taken down) or emailed to the HIV Medicine Association. All were anonymous. 

It wasn’t exactly a comforting read. 

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