New medicine will improve lives of 90% of cystic fibrosis patients

OMAHA, Neb. — Breathing — it’s not something most of us think twice about.

However for Nick Bell, and other patients living with cystic fibrosis, it’s a constant struggle.

“It’s just a drain on your energy daily,” Mr. Bell said. “You do so many treatments just to keep yourself breathing.”

According to the University of Nebraska Medicine Center, cystic fibrosis is a lifethreatening disease that builds up mucus in the lungs with an average survival age of 47 years.

Like most patients, Mr. Bell was diagnosed as a baby. At low points in his battle with cystic fibrosis, Mr. Bell says it’s felt like he was breathing through a straw.

But, that’s not how he is feeling now.

A new drug, Trikafta, was approved by the Food and Drug Administration in October and has dramatically increased Mr. Bell’s lung function to the point where he’s started working out again.

UNMC physician Peter Murphy says the medicine is the “cutting edge of science.”

“An average of 14% improvement in lung function,” Dr. Murphy said. “As much as 30% for some folks.” He adds patients are able to exercise more, cough less and it’s now easier to clear mucus from their lungs.

Unlike other drugs, Trikafta is eligible for 90% of cystic fibrosis patients.

For Mr. Bell, this new drug has changed his life. About a year ago, his UNMC team told him to start fundraising for a lung transplant. With this new drug, he no longer has to live with that reality.

“To be told that earlier this year, to how I feel right now standing in front of cameras talking about my life ... its a whirlwind,” Mr. Bell said. “It’s definitely been a game changer.”

Before Trikafta, his lung function was at 35%. Now, he’s at 54% with a goal of strengthening that number with this new lease on life.

The new drug will benefit 90% of cystic fibrosis patients, but Mr. Bell reminds us not to forget about the other 10%.

He has met other people battling this disease. One in particular is a 4-year-old Florida boy. “I want him to know that we’ll keep on fighting and raising awareness until there’s a solution for him, too,” Mr. Bell said.