• Commentary by Thomas Mims

Trikafta is a game changer

Typically, I try to keep the Sun’s sports pages focused on local athletes and largely free of my personal input. This week, dear readers, I ask that you’ll indulge me for just a moment while I share some exciting news that directly impacts yours truly – the cystic fibrosis treating drug Trikafta was approved by the FDA. I’ve been on the job as the Sun’s sports guy for just over six months now. Since taking over, I’ve covered two high school seasons, profiled several young athletes and shared my experiences with a hotdog eating contest in perhaps too much detail. In the story about the latter, I mentioned my cystic fibrosis. CF is a terminal genetic disease that affects the lungs, pancreas, liver and several other bodily functions, either directly or indirectly. For instance, a medicine I was on once to combat a bacterium in my lungs ended up damaging my once perfect hearing and vision. Now I wear glasses and can’t hear high pitched noises in my right ear. The disease slowly eats away at your body and can take your mind with it. Depression is very common in people with CF, particularly those who are regularly admitted to the hospital. Cystic fibrosis is a widely varying disease in how it affects those with it because there are countless mutations of the gene that determines whether you will have the disease or not. Some see more pulmonary symptoms, some have more digestive complications, and others may barely need treatment at all. These mutations are what made Trikafta such an important drug. Before Trikafta, there was Kalydeco and Orkambi. All three have the same goal – correcting a defective CFTR protein that controls the mixture of salt and water on many bodily surfaces, such as the lungs. The defective protein causes chloride to be trapped in the cells and prevents it from reducing the amount of mucous. That mucous is what causes a majority of CF-related problems. Kalydeco and Orkambi were able to perform this correction, but only in a limited number of patients and mutations. Trikafta, however, is expected to work for an estimated 90 percent of patients, per the FDA. For those 27,000 people, myself included, Trikafta represents the best treatment for cystic fibrosis to date. During trials, the average improvement was a 13.8 percent gain in percent predicted forced expiratory volume in one second (ppFEV1). That’s a fancy way of saying the amount of air patients could blow out of their lungs in one second after a deep breath went up significantly. For reference, when I am at my healthiest, I tend to have a ppFEV1 between 55 and 60 percent but when sick, that drops to the low 40’s. Trikafta improves a patient’s baseline numbers, on average, by a percentage similar to the difference between my peak and worst lung functions. You come to these specific pages for sports, not science lessons, so I’ll turn my focus there now. This drug could absolutely impact the ability of some to participate in athletics. That almost 14 percent increase in lung function will absolutely improve the performance and stamina of a CF-diagnosed athlete. A quick Google search of “Famous people with cystic fibrosis” turns up a rather short list, and one that is notably scant with athletes. The most famous sport-associated name with cystic fibrosis isn’t even an athlete. It’s Gunnar Esiason, son of Bengals and Jets quarterback Boomer Esiason. In honesty, I spent part of my childhood jealous of Gunnar because maybe, had my dad been a famous quarterback, I could have been one of the faces of CF. In hindsight, that’s a silly thing to be envious of. At the time though, it was a motivating factor that led me to spend countless hours throwing a football through a tire in the hopes of one day becoming the first quarterback with CF. That dream died when I grew to be six feet tall and couldn’t manage to weigh more than 145 pounds, no matter how much I ate. But now, perhaps the door to a “cystic” quarterback is open. Maybe someone who would have fallen just 14% short will now have what they need to maintain the health and regimen needed to reach the highest level. Hope might be at an all-time high in the CF community, and as Andy Dufresne said in “The Shawshank Redemption,” “Hope is a good thing, maybe the best of the things, and no good thing ever dies.” With Trikafta, hope is alive, and so too is my dream of a sports star living, and thriving, with cystic fibrosis.

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