Malcolm Doyle of West Hartford has been holding virtual meetings with Connecticut legislators to advocate for pulmonary fibrosis research funding and other support.
Submitted by Pulmonary Fibrosis Foundation (PFF)
In late March, West Hartford resident Malcolm “Mal” Doyle held meetings to educate Connecticut legislators about pulmonary fibrosis (PF) – a progressive, debilitating lung disease that causes scarring in the lungs.
Over time, PF can destroy the normal lung and make it hard for oxygen to get into the blood. Doyle was diagnosed with the disease two years ago and has been an advocate for awareness ever since.
“Pulmonary fibrosis is a disease that is not well known and there is currently no cure,” said Doyle. “I was honored to join officials and experts from the Pulmonary Fibrosis Foundation (PFF) in meetings with our government officials in an attempt to encourage more research funding so that we can ultimately find a cure.”
Originally scheduled as in-person briefings over two days in Washington DC, the meetings were changed to a “virtual” format due to the COVID-19 pandemic. Doyle met with staff representatives for U.S. Sens. Christopher Murphy and Richard Blumenthal, as well as U.S. Rep. Rosa DeLauro, to discuss the need for PF research funding and easier access to supplemental oxygen for patients.
He was joined in the meetings by Dr. Gregory Cosgrove, chief medical officer for the PFF; Dr. Mridu Gulati, associate director of the Yale Interstitial Lung Disease Program; and fellow PFF advocate Cindy Chandler.
“Everyone we spoke to was very receptive to our information and we are hopeful they will consider increased research funding for PF and grant easier access to oxygen, in the future,” said Doyle.
After his diagnosis, Doyle was prescribed oxygen therapy and a medication designed to help slow the progression of the disease. He wanted to help others with PF so he started the Greater Hartford Pulmonary Fibrosis Support Group, which now includes 15-20 patients and caregivers who meet every month.
Currently, more than 200,000 Americans are living with PF, a disease which remains largely unknown. According to a recent survey conducted by the PFF, 86% of Americans do not know the symptoms of PF, which include shortness of breath, fatigue and a lingering cough. Improving the understanding of this disease can help encourage support for needed research.
“Raising awareness has a huge impact in laying the groundwork for funding for research and programs to support patients and their families,” said Doyle.
To learn more about pulmonary fibrosis, please visit www.AboutPF.org.
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