As a mother, advocate and someone keenly attuned to the nuances in the health care landscape, I am concerned with the impending decisions of the Colorado Prescription Drug Affordability Board (PDAB).

My son, a warrior in the unyielding battle against cystic fibrosis (CF), has seen his life’s narrative fundamentally rewritten by the CF medication Trikafta. The introduction of Trikafta in his life has not only stabilized his health but fostered growth and stability. I feel tears coming on just thinking about how fast this drug turned his whole life around. Since starting on it in the fall of 2019, he has not been hospitalized at all. Not once. Not only has his health stabilized, he gained ground, reaching lung function percentages he hadn’t seen in years. And for the first time in his life, he could hold a job.

But, despite the astonishing improvements my son has experienced, Trikafta is a treatment, not a cure. It’s an expensive, but necessary, lifeline he and countless others depend on to maintain their hard-won ground in the fight against cystic fibrosis. The potential of a full life is theirs to enjoy, so long as this miracle drug remains within reach.

Stay up to speed: Sign-up for daily opinion in your inbox Monday-Friday

And yes, Trikafta is expensive. Targeted treatments for specific CF mutations are expensive. But so are two-week hospitalizations four times a year. Or a lung transplant and the anti-rejection drugs and treatments that go with it.

So is a funeral, the cost of which isn’t only measured in dollars and cents.

As PDAB considers which medications will have their costs regulated, the full scope of the issue must be considered. Though the noble ambitions of the PDAB to make medications more accessible is laudable, the possibility that individuals with rare chronic diseases might find themselves pushed further to the margins is distressing.

Current considerations by the PDAB could inadvertently restrict access to drugs vital for rare conditions, including cystic fibrosis.

I echo the sentiments of many when I express the anguish over the escalating costs of treatments for prevalent chronic conditions. Yet, as the PDAB moves ahead in this endeavor, a nuanced perspective that recognizes the distinct challenges posed by rare diseases is imperative. In striving for affordability, we must not curb the spirit of innovation that allows for treatments like Trikafta – medical breakthroughs that throw a lifeline to patients teetering on the edge.

The task before the PDAB is not an easy one: balancing the delicate scales of affordability with accessibility. But as they move forward, I implore the board to retain a broad lens, one that considers accessibility to life-saving drugs.

My son’s journey with cystic fibrosis has been thoroughly changed with the usage of Trkafka. It would be a massive blow to him, and many other cystic fibrosis patients, if their access to this medication was in any way impacted by actions of the Prescription Drug Advisory Board.

Jodi Bowersox is an author, artist and seamstress, as well as the president of the Colorado Authors League. She is the mother of two sons, the younger of which has cystic fibrosis. She lives in the heart of Colorado Springs with her husband Kevin and four crazy cats.