Trikafta and Alex Tarletsky
2020 began for Coaches Cure CF with a celebration far beyond the throws of New Year’s Eve, even one exceeding any celebration from recent memory. Our excitement started in October of 2019 as the 4th Vertex drug, Trikafta, was approved by the FDA. In November our hopes and prayers were answered when Alex added Trikafta to his therapy regiment.
Basically, Trikafta is science fiction in real-time. This twice-daily pill is a combination of three medications, two of which Alex was already taking. The main charge of Trikafta is the root cause of cystic fibrosis as it proposes to correct the genetic defect of the disease at the cellular level. Even more exciting is the fact that this therapy will address nearly 90% of the cystic fibrosis population.
Cystic fibrosis is a complex disease as it waits for no one and nothing. While winding up the fall 2019 semester of college classes, Alex’s health took a serious decline and he was hospitalized shortly before Thanksgiving. Delaying exams, finals, and papers became a certainty while his doctors resumed the regiment of IV therapy and care which Alex had previously fought so diligently to terminate. After 2 weeks of in-patient care, he returned home with a multitude of medications and therapies in hand to combat the new level of challenges that cystic fibrosis set in place. However, Trikafta was now in hand; insurance approved, shipped, and delivered just one month after its FDA approval!
In the weeks and months since the holiday season, Alex has worked ardently to regain the level of health that seemed to have swiftly dissipated over the past 4 months. With Trikafta by his side, Alex’s health is steadily making a combative improvement. He was able to finalize his college courses from home and while the spring 2020 semester of classes is taking place locally, he fully expects to be back on campus for summer enrollment. His overall health is strong enough at this point that his care team is currently discontinuing the three times daily IV regiment in exchange for an oral therapy program. This change will allow Alex to work part-time, attend classes, and regain much of his daily independence. He couldn’t be more excited and is thrilled with the opportunity to return to physical activity as the very real possibility of actually playing pick-up basketball and getting out on the golf course again is becoming a reality.
Planning has begun for the 2020 Coaches Cure CF Golf Invitational on May 11th. Chris and I, along with the entire committee are excited about this, our 12th year of golfing and supporting research for cystic fibrosis. As we celebrate Alex’s 25th birthday we can’t help but look back to see how far research has come since 1995, and we know that the progress we have witnessed is due largely in part to the sincere kindness of our family, friends, and perfect strangers. We are excited and look forward to seeing you in May, and as always, we are truly grateful for your thoughtful generosity and thank you for making our cause, one of your own.