Catherine Duff’s Story: Surviving C diff. Through At-Home Treatment Leads to Policy Change

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catherine-duffIn the span of 7 years, Catherine Duff had C. diff. 8 times with each recurrence becoming more severe to the point where she no longer responded to treatment. Her kidneys began shutting down, her heart was stressed. In 2012, doctors gave her the worst news possible: there was nothing more they could do, surgery was not an option her body would survive, and it was time she said her goodbyes and put her affairs in order.

Catherine’s children refused to accept their mother was out of options and through research found Fecal Microbiota Transplantation (FMT) was performed in Australia. Too sick to travel and with six doctors refusing to perform the procedure, Catherine’s husband, a retired U.S.Navy submarine commander, performed the procedure at home. Catherine’s life was saved. Within hours, she went from barely functioning to well enough to shower, dress, and eat!

How was FMT not a common procedure in the U.S. when C. diff is such a prevalent infection and up to 30% of those infected stop responding to antibiotics? To answer this question, Catherine started the Fecal Transplant Foundation to provide support to others seeking FMT through resource links and information, and to support clinical research about uses for FMT.  Catherine also attended the FDA Public Workshop on FMT at the National Institute of Health in Bethesda, MD. As the only patient out of 150 attendees, Catherine saw the importance of telling her story when she learned the proposed excessive regulation and administrative burden on doctors willing to perform FMT killed the adoption of the treatment option. A passionate, emotional debate between doctors and policymakers ensued based on Catherine’s advocacy to save other lives. And 6 weeks later, the FDA changed course to allow doctors to perform FMT for patients with recurrent C. diff not responding to antibiotics based on “enforcement discretion”.

Catherine’s courage to stand up of herself and other patients pursuing a viable, if controversial treatment option demonstrates the PVI Principle of Empowerment, Information, and Accountability.

Congratulations to Catherine for receiving an Honorable Mention for the PVI 2016 Impact Award!

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