Lobbying for a cure

Sam Kirton isn’t taking his diagnosis of pulmonary fibrosis lying down.

This week Mineral resident Sam Kirton is traveling virtually to Washington, D.C. to ask the state’s Congressional delegation for help in his fight against pulmonary fibrosis. He hopes more people who may have the condition can identify it before it causes them serious health problems.

Kirton, who is 59, had a chronic cough for a long time but attributed it to allergies. The Air Force veteran and government contractor had otherwise been in good health. Then, in the fall of 2016, he began experiencing shortness of breath and clubbed fingers, which he said was “not like me at all.”

A doctor observed scarring in Kirton’s lungs and told him he had idiopathic pulmonary fibrosis, which limits the oxygen he can get into his bloodstream. By idiopathic, the doctor meant that it was unclear what had caused Kirton’s condition. The disease affects more than 200,000 people in the U.S., or one out of 200 adults over the age of 60, according to the Pulmonary Fibrosis Foundation.

“It used to be associated with people in the asbestos industry or to coal dust,” Kirton said. “In my case, these things didn’t apply. There may be a genetic link, but I couldn’t clearly define that in my family.” Kirton had smoked cigars when he was younger, but doctors saw no evidence that was a contributing factor.

There isn’t an obvious treatment for people with Kirton’s condition. He tried a couple of orphan drugs, so called because they are unprofitable to produce for medical conditions that are rare. The drugs were intended to slow the disease’s progress, but the results were inconclusive. By 2019, Kirton was forced to start using supplemental oxygen to breathe. But he didn’t give in.

“I made a commitment to be the happiest sick person my wife’s ever met,” he said. “We’re not going to let it run over us.”

Kirton became an ambassador for the Chicago-based Pulmonary Fibrosis Foundation, advocating for patients and for solutions. When he meets this week with staff for Virginia Senators Tim Kaine and Mark Warner and Congresswoman Abigail Spanberger, Kirton plans to ask them to find funding for research into what causes the disease in the National Institutes of Health and Department of Defense budgets.

“We have a chance to touch a lot more people’s lives, and we’re going to leverage that,” he said. 

Kirton is now a candidate for a lung transplant to try to resolve his problem. He was approved for one in March 2020, but deferred action because of the coronavirus pandemic.

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