Time is the most precious commodity all of us have. Time is also the first thing we lose when chronic illness comes into our lives. I am living with cystic fibrosis (CF). For me, my life has long revolved around a rigorous daily treatment routine, recurring trips to medical centers and operating rooms, incessant negotiations with insurance providers, days spent too sick to climb the stairs, precious hours tending to my feeding tube and time spent coping with the psychological challenges of living with a terminal illness.

I was diagnosed with CF when I was two years old, and at the time, the outlook for my condition was bleak. Following my diagnosis, my parents, Boomer and Cheryl Esiason founded the Boomer Esiason Foundation to advance the cause of the cystic fibrosis community. Since then, our family foundation has raised nearly 150 million dollars in the fight against CF and has supported everything from drug development to clinical improvements and patient financial aid.

Back then, our basic science was solid, researchers had discovered the gene responsible for CF in the late 1980s, but drug development hadn’t yet tapped into the world of rare disease. We only had medications available to manage some of our symptoms — shortness of breath, pancreatic insufficiency, and chronic respiratory infection. There was no treatment available to treat the underlying protein dysfunction that causes cystic fibrosis to manifest in about 35,000 Americans.

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As I entered my early 20’s, I found myself slipping towards end-stage illness. The progressive nature of CF caught up to me. Drug-resistant bacteria had found its way into my lungs and turned my life upside down. My treatment arsenal began to fail me.

When I graduated from Boston College in 2013, I was denied the opportunity to enter the workforce like the rest of my friends and peers. Instead, I was in and out of the hospital.

Over the next five years, I battled through nearly two dozen medical procedures and more than a cumulative year on intravenous antibiotic therapy to slow my descent into the final phases of cystic fibrosis. I was running out of time while I waited for a breakthrough.

My opportunity finally came. In April 2018, I was one of a few hundred cystic fibrosis patients to dose in a pivotal phase III clinical trial to evaluate a new drug designed to correct CFTR, the dysfunctional protein responsible for CF. The medication, two pills in the morning, and one at night worked almost immediately.

Within a few hours, the viscosity of my usually thick, sticky mucus changed; within a week, the constant cough I had lived with for my entire life nearly vanished, and within a month, my pulmonary function tests skyrocketed. I could finally breathe.

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Instead of heading towards end-stage illness, disability income, and an end to my fight with cystic fibrosis, Trikafta, as the drug came to be named, saved my life. In a matter of days after dosing, I was allowed to look toward my future, a future that until then had to seem elusive. I am now in the first year of a joint degree Master of Business Administration and Master of Public Health program at Dartmouth College, a far cry from the days of not having the strength to walk up a flight of stairs.

Trikafta was approved by the Food and Drug Administration (FDA) in October 2019 for patients 12 and older. It is the fourth iteration of a class of medications called CFTR modulators, and it is appropriate for treating up to 90 percent of people with cystic fibrosis based on their genetic profiles.

While Trikafta is not a cure for cystic fibrosis, it has proven to be a life-changing medication for countless people in the United States. We must preserve our access to Trikafta.

A disturbing trend is washing over the United States, though. Insurers are using economic analyses based on a discriminatory cost-effectiveness metric called Quality-Adjusted Life Years (QALY) as negotiating leverage to limit access to life-changing medications.

A 2018 article in Health Affairs said, “QALY calculations inherently privilege treatments that extend the lives of those who can be restored to perfect health, and disadvantage the many who seek life-extending treatments despite having a disability or chronic condition that is not curable.”

Put, QALY is not adequately able to quantify what happened in my own life — my journey from near end-stage illness and no hope for a future to correctly managed CF and entrance into an elite graduate program. Living in a world where I would not have had the chance to dose Trikafta sends a shiver down my spine.

That world, however, has existed in countries where QALY has been used to justify not covering CFTR modulators for people with CF. In the United Kingdom, the National Institute for Health and Care Excellence (NICE) makes QALY calculations to determine which medications are covered by the nation’s National Healthcare Service. In 2016, NICE decided that Orkambi, a previous CFTR modulator iteration, was not cost-effective for its citizens.

Orkambi, a CFTR modulator appropriate for about 40 percent of people with cystic fibrosis, was approved by the FDA in 2015. That breakthrough medication only became available for people in the United Kingdom towards the end of 2019. Four long years for people with a rapidly progressive illness is not a small thing. Orkambi is still not widely available in Canada.

Many Americans have already transitioned off Orkambi to newer modulators, like Trikafta.

An analysis similar to the one from NICE was made in the United States by an organization called the Institute for Clinical and Economic Review (ICER), where it was found that CFTR modulators are not “cost-effective.”

I certainly would like to know why cost-effectiveness is being used against me. Would the analysts at ICER prefer I return to a state of recurrent hospitalizations, traumatic medical procedures, bouts of hemoptysis (coughing up blood), and the fast track towards end-stage illness and disability income? Frankly, I consider the talk of cost-effectiveness to be not only discriminatory but also pure ableism.

Fortunately, we don’t use QALY calculations to justify coverage, or, conversely, take the power of the prescription pad away from doctors in the United States on both the state and federal levels. While federal policymakers remain divided on this issue, the National Council on Disability has come out and said that QALY should not be used in Medicare and Medicaid decisions.

That has not, however, stopped states like New York, Massachusetts, and Tennessee from threatening to use cost-effectiveness to limit formularies.

I call on policymakers to listen to people living with debilitating illnesses and not to put our fates in the hands of a discriminatory economic model. We must preserve access to breakthrough medications, the innovative track that delivers these medications, and, ultimately, make sure that out of pocket costs are low for patients and families. I have great hope for the cystic fibrosis community now that we have a path toward a future. Do not take it away from us.

Gunnar Esiason is an MBA/MPH candidate at the Tuck School of Business at Dartmouth. He is living with cystic fibrosis and serves on the board of directors at the Boomer Esiason Foundation, his family’s non-profit organization that has raised near 150 million dollars in the fight against cystic fibrosis since its inception in 1993. Gunnar maintains a blog about his life with cystic fibrosis at GunnarEsiason.com.