Living with Idiopathic Pulmonary Fibrosis (IPF)
n 2018, Mal Doyle was diagnosed with idiopathic pulmonary fibrosis (IPF), the most common type of pulmonary fibrosis and an area of significant unmet medical need, affecting approximately 5 million people worldwide. The disease is fatal, as it causes the lung tissue to become thickened, scarred and stiff, leading to irreversible lung damage, severe breathing difficulties and, ultimately, respiratory failure. There is currently no cure for IPF.
To a passerby, Doyle looks like a healthy 83-year-old. But not every patient with IPF is like Doyle. Many are physically impaired, wheelchair-bound with an inability to perform even simple daily activities due to profound breathlessness, and require continuous supplemental oxygen to ease the burden of just normal breathing.
IPF symptoms include fatigue, gasping for breath, coughing and more. In Doyle’s case, he says he has more bad days than good. But despite his ailments, Doyle has a design for living.
"You have to look forward to something," he said. "Whether it’s your next meal, a cup of coffee, a phone call with a friend — you just have to look forward to tomorrow. That’s the key."
During the COVID-19 pandemic, a time when so many elderly individuals, and those with chronic lung disease in particular, are afraid to leave the house, Doyle continues to look forward. He heads out to his local doughnut shop every morning with his face mask and a paper towel to open the shop door. He orders ahead, so he’s in and out, and backs out of the door when leaving to avoid contact with the door handle.
"Many people I know just shake their heads when they hear I go out of the house,” he said. “But I believe in living."
Living also means continuing his work on behalf of the Pulmonary Fibrosis Foundation (PFF) – a national organization dedicated to acting as a trusted resource for all who are affected by this disease. Doyle started a PFF support group that is currently meeting virtually with hopes it would help others struggling with the condition.
"I want to do everything I can to help people with my disease live longer and better lives,” he said. “I want to see that there’s research done that can help find a cure."
At BMS, the wheels are in motion.
Several studies are underway to develop treatments that might slow the progression of fibrosis, according to Aryeh Fischer, MD, Senior Clinical Trial Physician, Bristol Myers Squibb, who has extensive clinical care and research experience in lung fibrosis. "We’re researching multiple mechanisms and approaches, with the goal of helping those living with IPF and other forms of lung fibrosis."
Learning from the Pandemic
The COVID-19 pandemic has also opened new doorways into the study of lung fibrosis, said Bruce Ellsworth, Ph.D., Head, Fibrosis Discovery Chemistry, Bristol Myers Squibb.
“We want to see if there are things that we can learn from COVID-19 and apply those learnings for patients with IPF and other forms of lung fibrosis,” Ellsworth said. “While IPF and COVID-19 are not the same disease, there’s potential to study the scientific aspects of fibrosis formation and resolution to potentially learn from one disease and apply it to another.”
The high need for treatment for IPF and patients like Doyle propel BMS scientists to drive research forward.
“The thing about Mal that really strikes me is his positivity and how motivated he is to get the word out about this disease. He educates people and, in his engagement with BMS, he encourages us to advance our research in this area,” Ellsworth said. “It’s really inspiring to our team to keep driving forward to find solutions for patients.”
For now, Doyle plans to continue his efforts to raise awareness, encourage more research to find a cure, and look forward to his hot coffee tomorrow morning.