Lung Transplant Foundation, FDA Confer About BOS

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Lung Transplant Foundation | Cystic Fibrosis News Today | BOS | illustration of a meeting

The Lung Transplant Foundation is hosting a meeting with the U.S. Food and Drug Administration (FDA) with the intent of educating the agency and public about the challenges of living with bronchiolitis obliterans syndrome (BOS), a severe complication of lung transplants.

“This is the first time that regulators and policymakers on [Capitol] Hill will hear directly from patients and caregivers about what it is like to live with BOS, a disease that represents an incredibly high physical, emotional and economic burden on patients, their caregivers and the healthcare system,” Amy Skiba, executive director of The Lung Transplant Foundation (LTF), said in a press release.

The meeting will be held 10 a.m. to 3 p.m. EDT Wednesday in Washington, D.C. Registration to view the livestreamed event is available online, and there will be opportunities for remote audience participation. The meeting will include patient panels and audience discussion sessions to discuss challenges of living with BOS, treatment strategies, and potential clinical trials.

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The LTF is encouraging people who have BOS, or are at risk of developing the condition, to fill out an online survey.

“We believe that understanding the patient journey can help the FDA make more informed decisions as they review potential therapies for BOS and will assist pharmaceutical companies in the design of clinical trials for BOS patients,” Skiba said.

Cystic fibrosis is characterized by the buildup of thick, sticky mucus in the lungs, which can increase the risk of lung infections and eventually lead to impaired lung function. In cases where lung function is severely impaired, a lung transplant may be given.

BOS, also referred to as chronic rejection, affects as many as half of lung transplant recipients in the five years after a transplant. BOS is a severe complication that often leads to respiratory failure and death just a few years after diagnosis.

It also imposes substantial costs on the healthcare system. The average cost of care for a transplant recipient with BOS is increased by about $150,000 in the year following diagnosis, compared to transplant recipients without BOS.

“While lung transplants give recipients a second chance of life, unfortunately, an estimated 50 percent of recipients will develop BOS five years post-transplant and be faced with no approved treatment options,” John Michael Reynolds, MD, a professor at Duke University School Medicine, said.

“As clinicians, we applaud the LTF for leading the way for transplant patients who have already faced an incredibly long and arduous journey with lung disease and eagerly welcome new therapeutic options to help change a patient’s prognosis, should BOS occur,” Reynolds said.