Why can't patients access phage therapy? Does FDA need to change, or do patients just need a voice?
Description
"This feels just like the early days of the HIV crisis. People are dying, you're not hearing about it. We need a group like ACT UP to bring this to the public. We're not going to get phage therapy until people start demanding we have it."
On this episode, we talk to phage therapy patient advocate Chris Shaffer about how he fought for access to phage therapy to save his own life, and how it's led him to advocate on behalf of other patients being told there's "nothing left" for their infections.
He draws parallels between phage advocacy and 1980s AIDS activism, while sharing his successful treatment journey to Tbilisi, Georgia for phage therapy. He shares his vision for a patient-centered future where anyone, not just the well-connected or the lucky, can access phage therapy if it could help them.
Here's a taste of what we covered:
1. 🦠 Chris's battle with a drug-resistant infection that antibiotics couldn't cure, and how after two years of suffering, he was completely cured in just four months with phage therapy
2. 🧪 The major obstacles to phage therapy access in the US: lack of awareness among doctors, patient trust issues, and difficulty finding phages that match specific infections
3. 🏥 The striking cost difference: Chris's complete phage treatment at Eliava (including doctor visits, tests, and therapy) cost $4,600 vs. $10,000+ for just a single round of IV antibiotics in the US
4. 🔬 How the FDA actually considers phages safe enough that they don't require the same safety testing as antibiotics - but this information isn't reaching patients or doctors
5. 📢 Why Chris believes we need more vocal advocacy similar to the HIV/AIDS movement in the 1980s-90s to push for greater phage therapy access
6. 📱 Practical ideas for improving access through non-profit phage centers, better education for medical students, and targeted communication strategies
Learn more:
- Chris Shaffer's book about his phage therapy journey: https://www.amazon.com/FINDING-PHAGE-Partnered-Bacterial-Superinfection/dp/1733418296
- Chris’ website: https://phagetherapyusa.com/
- Case study on Chris’ case, published in the International Journal of Clinical Virology: https://www.clinvirologyjournal.com/articles/ijcv-aid1059.php
- Eliava Phage Therapy Center in Tbilisi, Georgia: https://eliavaphagetherapy.com/
- 2021 FDA-NIAID Workshop on Phage Therapy transcripts mentioned during the conversation: https://www.fda.gov/media/159401/download
- Pranav Johri's case study that helped Chris trust phage therapy: https://pubmed.ncbi.nlm.nih.gov/37790805/
- An youtube interview we did with Pranav about his story: https://www.youtube.com/watch?v=V-Qso4q52CY
- An interview we published in Capsid & Tail on Pranav's story: https://phage.directory/capsid/phage-therapy-access-india#article
- The PASTEUR Act, which Chris mentions: a bill in US congress (still has not passed) on changing how antimicrobials can be paid for by the government: https://www.contagionlive.com/view/an-update-on-the-pasteur-act