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O’Connell grad shares about breakthrough cystic fibrosis drug

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Every morning for an hour, Walter Whitt straps on a life vest-looking contraption. Then he waits as tiny motors inside the vest gently coax out the sticky mucus clogging his airways. Then he inhales a host of different medications and gets on with his day.


This routine typically keeps complications from his cystic fibrosis at bay, a progressive, genetic disease that makes patients susceptible to persistent lung infections and gradually limits their ability to breathe.


But what’s most frustrating to Whitt isn’t the daily inconveniences of cystic fibrosis but that getting sick can bring him to the hospital for weeklong treat one or two times a year. “The day-to-day maintenance items aren't so bad — it’s the bigger hospitalizations that can really throw my life for a loop,” he said. That’s what he’s hoping the new breakthrough drug Trikafta will prevent.


Recently, the Food and Drug Administration announced the approval of the triple combination therapy treatment, which the Cystic Fibrosis Foundation lauded as “a tremendous breakthrough and exciting news. Clinical trials of Trikafta showed dramatic improvements in key measures of the disease. We are overjoyed that this will mean more people will have effective treatments for their disease.”


According to the FDA, the drug works by targeting the defective protein and helping it function more effectively. Whitt started taking an earlier iteration of the drug toward the end of high school. He has only been on this drug for two weeks, but says he’s feeling less congested and generally better.


“For the first time in my life and in this community, you have a drug that’s actually targeting the genetic defect associated with CF and that’s a huge deal,” he said. “Prior to that, you really didn’t have anything that was fixing the issue. It was more like, how many years can we squeeze out extra for this person versus how do we fundamentally change their life?”


The life expectancy of people with CF who are born between 2014 and 2018 is predicted to be 44 years, according to the Cystic Fibrosis Foundation.


A breakthrough like this is something the community at Bishop O’Connell High School in Arlington, where Whitt graduated in 2016, has been praying for. In 1975, O’Connell student Maura O’Donnell, herself a cystic fibrosis patient, organized a 12-hour dance marathon fundraiser for cystic fibrosis research in honor of her sister and fellow student Brenda, who had died from the disease. Since then, the school has raised more than $4 million through the annual event held in March.


Whitt chose O’Connell in large part because of the community’s awareness of the disease and its efforts to raise money for a cure. “I realized there are people out there, there are communities out there that care about what's happening to me and my well-being and are willing to go the extra mile to help me be successful. It left a big impression,” he said. “It isn’t so common you find institutions that are so supportive, and I don't take that for granted.”


After O’Connell, Whitt studied economics at Harvard University in Cambridge, Mass., and now is taking a gap year to work at a private equity firm in Los Angeles. He’s cautiously optimistic about how Trikafta will impact his life. “I do have to ground myself. This could be really good, this could be the kind of breakthrough we’ve been looking for, but at the same time not everything is what it’s made out to be,” he said. “(I’m) trying to take it day by day. If I wake up one day and I’m 45 and I’ve been taking this drug and my lung function is where it is now, I’ll be really happy. If that’s not the case, it's the same circumstances I’ve grown up with and I'll figure it out.”


© Arlington Catholic Herald 2019