The Voice of the Patient Report
This report is the culmination of the Lung Transplant Foundation’s efforts to engage patients in all aspects of treatment development for Bronchiolitis Obliterans Syndrome or BOS.
The Voice of the Patient reports shares patients lived experiences with BOS in their own words. Patients share what it’s like to live with BOS, frustrations over insurance not covering the current available treatments, and lack of overall available treatments for BOS including the burden of receiving treatment.
The Lung Transplant Foundation wants the FDA, drug manufacturers, researchers, and clinical trial design experts to take our patient’s voice, their words, and their experiences and recommends that these findings be considered when developing potential BOS therapeutics and eventually a cure for BOS.
The Externally Led PFDD meeting and hearing our patients’ voices on living with Bronchiolitis Obliterans Syndrome is an enormous step in the right direction in bringing new treatments that keep the patent at the forefront, of our community.
“I found the report to be highly comprehensive. I’ve been aware of BOS for seven years and have read and heard much about BOS in that time. This report has all the information in one place and was presented in a way that was straightforward and easy to follow. After reading the report, I understand BOS better than I ever have. I believe anyone who reads the report will have a very good understanding of BOS and the complications associated with post lung transplant.”
— George Chatneuff
Did you miss the live meeting?
The June 22 EL-PFDD meeting is a historic, pivotal event for The Lung Transplant Foundation and more importantly, for lung transplant survivors. It will help us educate the FDA about the challenges of living with BOS so more effective treatments can be developed.
About BOS
The first human lung transplantation was performed on June 11, 1963. It was considered then (and now) to be something of a miracle procedure. A lung transplant can bring back easier breathing, provide years of life, and replace healthy lung function for people with severe lung disease. The unfortunate complication is a disease called Bronchiolitis obliterans syndrome or BOS (pronounced BOSS). The disease can attack the healthy new lung and make the body reject it. A full 50% of lung transplant recipients may develop BOS. If the condition develops, it can make an already difficult transplant journey that much harder. The poor outcomes regarding BOS are due to poor diagnostic criteria, poorly understood disease pathogenesis and very few studies of therapeutic or supportive care interventions.
Authors:
Carolina Consuegra and Dr. Laura Joachim.
Patient Co-Authors:
Carmel Aronson, Martha Austrich, Denise Des Roberts, Cara Favuzza, Carrie Gobble, Gary Gobble, Amanda Helderle, Sara Kominsky, Ruth Magnus, Stan Magnus, John Rost and Jen Weber.
Editor:
Richie Kahn
Funding:
We would like to thank our sponsors:
- Mallinckrodt Pharmaceuticals
- Altavant Science
- Zambon Group
- PatientMPower
Pharmaceutical partners were not involved in design, planning, coordination, or execution of the meeting.
Consulting Partners:
J. McNary Consulting
Clinical Advisor:
John M. Reynolds, MD
Pulmonologist, Transplant Pulmonologist
University of Cincinnati College of Medicine
Pulmonary-Critical Care, Indiana University School of Medicine
American Board of Internal Med, Critical Care Medicine
American Board of Internal Med, Pulmonary Disease
ACKNOWLEDGMENTS:
We would like to thank LTF board members for their tireless support and assistance in the planning and execution of this EL-PFDD meeting as well as the patients, caregivers, and care partners that made their voices heard.
POINT OF CONTACT:
Amy Skiba Email: amy@lungtransplantfoundation.org REPORT DATE: February 16, 2023
Thank You To Our Sponsors
