When Twitter told me last week that my former next-door lab neighbour just mailed phages to a dying girl, I actually started believing that my research might mean something. Not eventually, but today.
I used to think phage researchers like me were meant to do plaque assays in a lab for a few decades, while “other people out there, in 50 years, maybe” would sift through the information I would eventually publish and use it to cure people of bacterial infections. I’d gotten comfortable with the idea of doing research for the sake of research. I’d become proud of my patience and my willingness to do science without needing it to help people. I thought this made me a good scientist.
My thinking started to change when I heard the story of Tom Patterson, the patient cured last year in San Diego of his A. baumannii infection following phage therapy. The part that really got to me was how his treatment was essentially crowd-sourced in an effort led by his wife, Steffanie Strathdee (@chngin_the_wrld).
Fast forward to a week and a half ago, when I noticed that Steffanie’s phage-sourcing efforts were back in full force. This time, she was working to save 25-year-old Mallory Smith from drug-resistant B. cepacia. This time, however, I was watching it in real time. She used hashtags and @mentions to ask researchers to send phages. She used caps lock to emphasize urgency.
I had a fleeting thought about texting my friend from Jon Dennis’ lab at the University of Alberta, because I knew they worked on B. cepacia. Instead, I thought, those hashtags aren’t for grad students like me or for labs like ours. Those messages are for companies that make lots and lots of phages using proprietary processes, for labs with ties to hospitals that work with patients, for government organizations like the US Navy and its phage library.
And then I saw Steffanie tweet a thank-you to @JonDennis8 for sending phages, and I realized that the kind of researcher she was trying to reach was me.
I shared all of this with my friend Jan Zheng, who specializes in how humans interact with computers. He designs ways of simplifying this experience. Upon seeing the Twitter trail and hearing about Mallory and Tom’s stories and the phage hunts associated with both, he excitedly proclaimed that he knew how we could simplify this experience too.
We spent the next several days creating Phage Directory (phage.directory), a website designed to help treat patients infected by drug-resistant pathogens with safe and effective doses of phages, on a last-resort, emergency basis through the FDA’s Emergency Investigational New Drug process.
Although phage therapy is not yet ready to be adopted by mainstream Western medicine, the FDA is ready for phage therapy on a case-by-case basis as long as antibiotics are tried first. To paraphrase what Scott Stibitz of the FDA said at the Evergreen Phage Meeting this year: those of us who have been repeating the trope that the FDA is an enemy of phage therapy should stop, because we’re wrong.
A major part of what Jan and I envision that this directory will do is to serve as a searchable resource and alert service to help patient advocates find phage researchers who are willing to send phages to a patient in need, on an individual, on-demand basis. We also hope to connect these researchers with those willing to test the host range of these phages on patient isolates and then to propagate and purify promising candidates prior to shipment to the patient.
Two days into building Phage Directory, we found out that Mallory had passed away. This heart wrenching news spurred us on, and we launched the site last Friday. We made a Twitter account and began reaching out to phage researchers and others who might be interested in the cause.
Now, a week after its launch, we have reached 100 followers on Twitter (mostly phage biologists) and have been talking to Steffanie about how a directory like this would optimally function. She put us in touch with Tobi Nagel of Phages for Global Health, who was excited to talk with us. Phages for Human Applications Group Europe (P.H.A.G.E.) has encouraged its members to sign up, and several of them have. Sylvain Moineau and the Félix d’Hérelle Center at Université Laval in Canada are also on board.
On Monday of this week, we found out that Mallory’s parents were thrilled to hear about Phage Directory, and want to help us help other patients in honour of their daughter. On Tuesday, the journalist at STAT News who wrote the original article detailing Steffanie’s efforts to find phages for Mallory interviewed Jan and me for his next story.
What began as an offhand comment that we should make “PhageBook” has become a very real and impassioned effort to identify the barriers to treating patients with phages, particularly in the West, and to systematically design ways to overcome these barriers. Especially at this stage, we are open to suggestions on how best to put together this resource.
In addition to its role as a phage researcher directory and virtual phage library, we envision Phage Directory becoming a resource for physicians and other patient advocates seeking to learn about the actions required to initiate phage therapy in a patient, the associated legal implications, and the particular phages and treatment strategies available.
We see it becoming a communication platform that facilitates and organizes secure exchanges between doctors and researchers, before, during and after phage treatment, e.g. which phages should be tried first or next? How does susceptibility to each phage and antibiotic evolve over the course of each treatment iteration?
We see it providing the public with an interactive lens into the world of phage therapy, where patients and families can identify and communicate with phage researchers and physicians willing to facilitate phage therapy.
We see it helping to build legitimacy and transparency into the process of phage therapy to help regulatory agencies gain confidence in its feasibility.
Overall, we see Phage Directory as an action-oriented tool that will break down barriers to phage therapy by providing a multi-stakeholder communication platform designed to simplify and streamline the process.
Since I’ve joined our remarkable phage community, I’ve become increasingly conscious of its deep commitment to bringing phage therapy to modern medicine. I hope that many of you will add yourselves to Phage Directory and that you’ll sign up for the alert service so you can be contacted in the event that a patient needs your phages.
Finally, I hope that you’ll spread the word about this initiative so we can all take advantage of the momentum generated from Tom and Mallory’s recent public battles to put what we’ve collectively been writing and thinking about for years into a new kind of action.