Congress, don't leave cystic fibrosis patients behind

I was 3 weeks old when my parents found out I had cystic fibrosis – a rare, genetic disease that affects some 30,000 Americans, causing thick mucus to clog up our lungs.

I've fought this disease every day since. I wake up at 4:30 in the morning to inhale medication. Up to three times a day, I strap on a device that looks like a jet-pack to shake the mucus from my lungs. I've had to take as many as 40 pills a day.

CF patients never know when we'll fall gravely ill. For much of my life, I was hospitalized three to four times a year, for up to six weeks at a time, receiving antibiotics through an IV. When I was a preteen, I was diagnosed with a bacteria in my lungs, and told I would need nine months of IV treatment. I've been told by doctors that I could lose my hearing and face major organ damage, that I needed a lung transplant, and that I would die a painful death.

This kind of thing makes it hard to plan for the future, or even the next day. And yet we persevere in the hope that tomorrow will bring a cure.

And we do have reason for hope. In my 19 years, drug research and scientific advancements have been transformative for people with CF. Our average life expectancy has more than doubled, from 14 when I was born to 37 years today. Life expectancy for children under 6 with CF is even longer.

My own journey has also included a devotion to fitness. I started running in my early teens, even though for me the effort felt like I was wearing nose clips and breathing through a straw.

I ran my first half marathon at 14. I've run two more since, plus several triathlons, and a Chicago full marathon in 2019, when I was 16. In June, I became the youngest man with CF in the United States (possibly the world) to complete a half ironman.

I mention all of this not to brag, but to illustrate what scientific progress can mean to people with rare, incurable diseases.

The treatment I take now became available in 2019, and has been completely life-changing. It's the first medicine to target the underlying cause of CF, a mutated gene, and it significantly improves lung function. That means I can now take a full, deep, unhindered breath. It feels fantastic.

And while this drug is not a cure, in younger children, it can stave off common complications and slow the progress of the disease. It is giving us the thing I never knew if I could have: A future. I'm even hopeful that with continued hard work by researchers, the initials CF could come to stand for "Cure Found."

However, whether or not that happens could depend on a piece of legislation before Congress. I don't often speak out on national policy. But just as I try to raise money for CF when I run races, I feel compelled to speak up for my community in the political arena too.

Right now, an existing law called the Orphan Drug Act encourages research into rare diseases like mine. The hard truth is, since CF afflicts fewer than 100,000 people worldwide, curing it will never bring in the kind of profits associated with treating common conditions. The Orphan Drug Act gives companies a tax credit to help with the expense of conducting trials on rare diseases, which makes the research financially viable.

Unfortunately, a large and complex spending bill making its way through Congress – the Build Back Better Act – would cut back eligibility for this tax credit.

For the CF community, losing this incentive to continue research would be both heartbreaking and life-threatening. Patients, parents, physicians and researchers have come so far. We have hope. But we need Congress to allow us to finish the race.