Our mission is to improve the lives of lung transplant patients and their families.

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 (BOS).

The Voice of the Patient Report 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 currently available treatments, the lack of available treatments for BOS, and the burden of receiving treatment.

The Lung Transplant Foundation wants the FDA, drug manufacturers, researchers, and clinical trial design experts to listen to our patients' 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 Bronchiolitis Obliterans Syndrome Externally-led Patient-Focused Drug Development (EL-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.

About BOS

The first human lung transplant was performed on June 11, 1963. It was a revolutionary procedure. A lung transplant can bring back easier breathing and provide years of life for people with severe lung disease. One complication of lung transplant is a disease called bronchiolitis obliterans syndrome or BOS (pronounced "boss"). The disease can attack the healthy new lung(s) and make the body reject the lung(s). Fifty percent 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. 

Did you miss the live meeting?

The June 22 EL-PFDD meeting was a historic, pivotal event for The Lung Transplant Foundation and more importantly, for lung transplant recipients. It will help educate the FDA about the challenges of living with BOS so that more effective treatments can be developed.

"I understand BOS better than I ever have...

“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

Acknowledgements

Thank you to the Lung Transplant Foundation 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.

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

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

REPORT DATE:

February 16, 2023

POINT OF CONTACT:

Amy Skiba
Email: amy@lungtransplantfoundation.org

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