The U.S. Food and Drug Administration (FDA) organized a workshop on pulmonary fibrosis, which took place on September 26th, in collaboration with the Coalition for Pulmonary Fibrosis (CPF), with the purpose of advocating for the disease throughout the country. Four of the eight panelists at the workshop also attended a meeting on Capitol Hill with 18 other advocates and 38 congressional offices.
The CPF’s vice president, Teresa Barnes, who was one of the founding board member for the CPF before she joined the staff in 2006, was one of the FDA panelists. Barnes became involved in advocating about the disease because she herself experienced the pain of PF firsthand, losing five members of her family to the disease.
Heather Snyder of Harrisburg, Pennsylvania, the CPF’s Daughters of Pulmonary Fibrosis program northeast regional co-leader, was another of the advocates. Snyder suffers from the disease, which forced her to receive a lung transplant three years ago, and her father died from it when she was only a child.
CPF representatives Curt Thompson, from Richland, Mississippi, whose wife and twin sister were also victims of the disease, as well as Faye MacInnis, from Newark, Delaware, who lost her husband to IPF, were the other two advocates present on Capitol Hill.
“We are pleased that so many of our advocates were asked to participate actively in the FDA’s IPF Workshop,” said CPF’s CEO, Mishka Michon. “They each have much to share that can better help the FDA to understand what patients and caregivers face with this devastating illness.”
The eight panelists present at the FDA workshop were chosen by the FDA based on their perspectives and personal experiences, to provide insight into the disease symptoms, quality of life, and drug treatments. There is yet no therapy approved by the FDA for IPF, however, the administration was willing to discuss alternative treatments. One of the purposes of the FDA workshop was to hear patients and their testimonials, in order to understand each symptom and experience, as well as their opinions on current approaches to treat the disease.
In addition, the FDA was sensitive to the fact that the disease is highly debilitating and has a high mortality rate, which makes it difficult for patients to travel to attend meetings such as this one, which explains why the majority of panelists were caregivers and family members.
The Capitol Hill meeting was part of the initiatives organized by the CPF for the 2014 Pulmonary Fibrosis Awareness Month, held in September, which was established by the organization and is already in its 12th annual edition. The CPF prepared a series of activities in order to raise awareness about the disease and support research for a cure.