Three decades into cystic fibrosis fight, Boomer Esiason and his son Gunnar are winning

As NFL quarterback Boomer Esiason was about to step onto the practice field for the New York Jets in 1993, shortly after being traded to the team, he was quickly pulled off to take an urgent phone call from his wife, Cheryl.

Their two-year-old son, Gunnar, had been rushed to Cincinnati Children’s Hospital. Shortly thereafter, Gunnar was diagnosed with cystic fibrosis, an inherited genetic disorder that causes mucus to build up and damage organs in the body, particularly the lungs, and often leads to permanent lung damage. Symptoms of the disease can appear at any age, but at that time the diagnosis was widely viewed as a fatal pediatric disease.

Esiason, recalling the day with CNBC’s Becky Quick at the CNBC Cures Summit on Tuesday, said the first call he made after speaking to his wife was to his father. His second call was to sportswriter Frank Deford.

In the 1988 NFL season, Esiason won the NFL Most Valuable Player award as a member of the Cincinnati Bengals and attended an award ceremony in Washington, D.C., where the featured speaker was Deford. While Deford was perhaps best known for his work covering sports, he was also a staunch advocate in the fight against CF, following the death of his eight-year-old daughter Alex to the disease.

“I had never heard of the disease, and he spoke, and there wasn’t a dry eye in the house,” Esiason recalled. “I said [to Deford], ‘Can I help you? Can I help you raise money?’ So, I went back to Cincinnati and became a fundraiser.”

Esiason said that when he spoke with Deford that day and told him of Gunnar’s diagnosis, he had thoughts of stepping away from football to take care of his son. However, Deford encouraged him to “use all of your powers to leverage every single media outlet you possibly can to put a name and a face on this disease” to move the fight against CF forward, Esiason said.

“I looked over to Sheryl, and I said, ‘No more. This is going to be a rocket ship, and we’re going to take off,'” Esiason said.

That led to the founding of the Boomer Esiason Foundation, which serves as a patient advocacy leader for the CF community and provides funding to various causes, including research grants, hardship assistance to families affected, and scholarships for students in the CF community pursuing higher education.

Esiason’s advocacy thrust Gunnar into the national spotlight, and months later, the two were on the cover of Sports Illustrated with an article discussing the challenges that people diagnosed with CF face and the impact the Esiasons would aim to have.

But that battle had only just begun for Gunnar. Appearing alongside his father at the CNBC Cares Summit, he said the “care for cystic fibrosis is extremely active and arduous,” and he outlined the hours he spent tied to a nebulizer machine before going to school, how he had to wear a mechanical vest that dislodged the mucus from his lungs, eating from a feeding tube, and the various other health challenges that came with his diagnosis.

“I was dealing with pulmonary exacerbation after pulmonary exacerbation,” Esiason said. He recalled coming home from college and having a conversation with his doctor about how he was running out of treatment options.

“At that point in my life, when I was 22 years old and coming out of college and everyone sort of moves to this city or that city and starts their careers, for me, I was right back at home living with my parents, just going from health crisis to health crisis,” he said. “I just remember feeling just completely overwhelmed, like I have to get out of this perpetual cycle of just hell.”

That feeling prompted Gunnar to participate in a clinical trial for a drug called Trikafta in 2018, which had received funding from the Boomer Esiason Foundation. Manufactured by Vertex Pharmaceuticals, the drug was granted fast track review by the FDA and was initially approved for use in 2019.

“The opportunity sort of felt to me like I could do something with my life, even if the drug did not work,” he said. “Even if the trial failed, it was still an opportunity to contribute to something, and the core learning of that time in my life is that in the rare disease space, especially, patients are a finite resource, and the drug development industry does not move forward without them.”

“When I was offered the opportunity to be involved in the clinical trial, the answer was very quickly yes, not only for myself to get out of the hell I was living in, but also to contribute to the broader CF community,” he said.

But miraculously, after taking the drug for just a few days, Gunnar said: “Everything was gone.”

“I woke up that morning, two or three days after starting a clinical trial .. I remember waking up feeling rested for the first time in my life, and I was 27 years old,” he said. “I had always hoped for something, and I had spent nights tied to my feeding tube, PICC lines, and you name the IV antibiotic, and within a matter of days, it was just pure freedom.”

‘Just won the Super Bowl.’

The two Esiasons recalled how later that week, they played in a recreational hockey league game, something that they continued to do despite Gunnar’s health complications. Typically, Gunnar had to keep his time on the ice short due to his difficulty breathing, often coughing up mucus when returning from his shift.

But in that game, he extended those shifts, often on the ice for multiple minutes at a time, something that Boomer Esiason said raised some complaints from their teammates, but also raised a question in his mind.

“I’m sitting there, and I don’t know what to say. He plays like he’s never played before, and after the game, he’s drinking beers. We stopped to have pizza, and because CF involves the pancreas and the stomach, these kids don’t eat a lot. So, he sits down and basically scarfs down half a pizza, and I’m like, ‘What the hell is going on?'”

Esiason, who had thought his son was on the placebo in the clinical trial, said the moment Gunnar told him he was on the drug and it was helping him, it was “like I had just won the Super Bowl.”

“Everything that he was going through in his life, all of a sudden, there was a future,” he said.

In the years since, Gunnar, now 34, earned his MBA and began a career focused on novel healthcare technologies. He also got married and now has two children — both via IVF. He and his wife used that experience to start a new initiative for the foundation that supports CF families looking to have children with IVF.

Overall, the foundation has raised nearly $200 million in the fight against CF, and has played a key role in helping to increase the life expectancy of those diagnosed with the disease, many of whom now live well into their sixties and beyond, a remarkable shift for a disease that was once seen in the 1980s as a condition where children wouldn’t live past elementary school ages.

“It’s not the easiest thing in the world to take something public like this,” Boomer Esiason said. “But I can tell you that if I didn’t do what we did, and Gunnar wasn’t brought into it, we wouldn’t be sitting here today, and a lot of that has to do with putting a face on something that people don’t know anything about, and that’s what Frank Deford did for me back in 1989, and that’s what we’ve been trying to do since 1993.”