Morgan Barrett: From Crisis to Stability, The Life-Saving Power of One Drug

Morgan Barrett, a resident of Kansas, was diagnosed with cystic fibrosis (CF) at only seven years old. She and her two siblings have the same form of the disease, and growing up, they faced many serious health challenges. CF is a genetic disorder that primarily affects the lungs and digestive system and can cause breathing difficulties, frequent lung infections, and problems with nutrient absorption.

In her twenties, Morgan was hospitalized every year for two week stretches to treat flare-ups caused by her CF. These stays involved strong antibiotics, breathing treatments, and care from a team of specialists.

Everything changed in December 2019, when a new CF medication called Trikafta was approved. Soon after, she experienced what patients call “the purge”—a period of intense coughing as her lungs cleared. For the first time in her life, she could breathe without pain. “I didn’t cough, which was the weirdest thing,” she said. “Because my entire life that has been an ever-present thing.”

Since starting Trikafta, Morgan has stayed out of the hospital, her lung function has stabilized, and she’s finally been able to maintain a healthy weight. “It’s been completely life-changing,” she said. The drug has also saved Morgan money by replacing expensive interventions, “I don’t have to take all the medications that I used to take before. All the breathing treatments, all the antibiotics, the hospitalizations—that all went away.”

But this life changing medication comes with a massive price tag—about $28,000 a month.

Morgan currently relies on Vertex’s copay assistance program, which has so far covered nearly the full cost of Trikafta, including $15,600 this year. The program has a $20,000 cap, and once that’s reached, her out-of-pocket costs will depend on the insurance company’s decision under its copay adjustment program.

Morgan works full-time for a statewide environmental education nonprofit that does not offer health coverage. Her family relies on her husband’s job at the University of Kansas Health System for insurance. A return to poor health would put enormous strain on her husband and family, especially since they do not have extended family nearby for support.

To stay healthy, Morgan must maintain her access to Trikafta.

She has already seen the consequences of losing that access though the experience of a friend who had to stop taking it for several months due to an insurance issue. He quickly declined and was hospitalized. “That’s how fast it can happen,” she said. “It would be expensive, and it would be really devastating for a lot of people to backslide. A lot of people, my sister included, were so sick that their lives were at risk. Trikafta came in the nick of time for many of us. It literally saved my sister’s life.”

A long-time participant in CF clinical trials, Morgan stressed the importance of protecting federal research funding. She warned that the proposed cuts to NIH and the FDA could jeopardize progress, especially for people with rare CF mutations who still don’t benefit from Trikafta.

Morgan warns that cutting research funding without strategic planning is dangerous. “This will not be cost savings. It’s just going to transfer the cost somewhere else, plus people will be sick.”