Gunnar Esiason's story highlights importance of clinical trials | Opinion

I hear a lot of stories about rare diseases and how they affect − and often shorten − people’s lives. And I have spent a lot of time thinking about the research and clinical care that helps people with rare diseases live longer lives.

But I recently had the honor of hearing Gunnar Esiason, son of beloved former Bengals quarterback Boomer Esiason, talk about his experiences living with cystic fibrosis, about how the disease stalled his goals as a young man, and about the hope and vibrancy that one clinical trial restored to his life. Gunnar’s story centered for me how critically important this work is − not just to save a life, but to help people thrive.

Gunnar was diagnosed with cystic fibrosis in 1993. With the support of his care team at Cincinnati Children’s Hospital, Gunnar was able to live a full childhood, even competing on his high school’s football team. But near the end of high school, he contracted mononucleosis, and the illness triggered many complications of cystic fibrosis.

Cystic fibrosis is a rare disease, affecting about 30,000 Americans. It causes organs and cells that produce mucus in the body to malfunction, prompting thick mucus blockages that can also catch germs and cause significant infections. It is a genetic condition, and there is no cure.

As the disease began to cause more health problems for Gunnar, he explained, his life felt purposeless, like he existed to survive rather than to truly live.

He enrolled in one clinical trial, then a second. In 2018, he enrolled in a clinical trial and the impact was almost immediate. When his health began to stabilize, it unlocked his ability to seek out new dreams.

He earned an MBA. He took on a leadership role with the Boomer Esiason Foundation, which supports and advocates for people with cystic fibrosis. He got married. He started a podcast. He and his wife are now raising a 2-year-old.

The life span for someone with cystic fibrosis used to be about 30 years. Now, people with the disease can and do live into their 80s.

We talk a lot about saving lives. But through Gunnar, and stories like his, we see that this work is about so much more than survival. It is about fulfillment. Gunnar’s life now is about more than his disease. It’s about love. A home. A family. A career.

The pandemic showed that we can and should fast-track some treatments. Consider Sarepta Therapeutics with its research and development center based here in Ohio, which is working to fast-track its gene therapy for Duchenne muscular dystrophy, another rare disease. Consider the clinical trials underway across Ohio. More than 5,600 are either active or recruiting now in our state. Think of all the people who could benefit. Think about the lives they might live.

The life sciences are, I believe, an economic powerhouse for our state. The industry employs nearly 84,000 Ohioans; salaries average around $84,000 a year. That’s part of why we advocate so hard for investment and policies that support the life sciences here.

But the biggest reason are people like Gunnar, who need new treatments that will help them truly live. The organizations that make up our life sciences industry − medical devices, biopharma, digital health, agtech, labs, research institutions − exist to allow people to dream of lives unencumbered by disease, to set goals that might have seemed impossible while health challenges stood in the way, and to go and achieve them.

We can help create the kind of ecosystem that supports those discoveries. We just need to be thoughtful about investing in it, advocating for policies and laws that support it and learning more about why it matters. We have the chance to not only save lives, but to put people in a position to thrive. What a powerful opportunity. Let’s not let it go to waste.

Eddie Pauline is president and CEO of Ohio Life Sciences, the life science industry’s trade association in Ohio.

This article originally appeared on Cincinnati Enquirer: Gunnar Esiason's story highlights importance of clinical trials | Opinion