After a Year of Trikafta, Where Do We Go From Here?

I used to scoff at the idea of saving money for retirement. It didn’t seem feasible to me to try to plan decades into the future. I accepted long ago that I wouldn’t live past 40, so why save money for a distant future if it was unlikely I would ever see retirement?

Some might view not planning for retirement as irresponsible. But cystic fibrosis is a disease one can’t have strong opinions about, particularly regarding how one might act, unless they’ve had it.

Many of us have thought about death since a young age. Mortality is not a concept Americans enjoy talking about, so it’s on us to process death internally, and then gently tiptoe around it to avoid upsetting those who care about us. Or, maybe we do it because we fear being labeled “morbid,” “depressing,” or “pessimistic.”

While I still talk openly about death, I have begun saving for retirement.

I can’t fathom how much has changed for me after being on Trikafta (a triple combo of elexacaftor, tezacaftor, and ivacaftor) for a year. While I will share how drastically my life has improved after taking it, I have a couple of disclaimers. I am exceptionally healthy, which is not necessarily true of everyone on Trikafta.

Also, some people don’t openly share information about their health. But I believe it is important to discuss just how life-changing Trikafta has been for me.

Since being on Trikafta, my lung function (FEV1) has increased and stabilized above 90%. I never imagined being at such a high level of lung function in my mid-20s. And it’s been over a year since I’ve needed antibiotics. My mucus is thin and clear, and I can hardly expel any. I can’t even produce sputum for cultures, and I haven’t cultured any bacteria in my throat cultures in a year.

Most remarkably, my sweat chloride has dropped from 110 to 44, for an unbelievable drop of 60%, to an intermediate range for CF diagnosis. I may be able to come off of inhaled antibiotics, and my doctors and I have discussed reducing redundant medications to lighten my burden of care. Some days I don’t cough at all, and my exercise regimen allows me to feel, as much as I despise this word, “normal.”

It can’t be overstated how unbelievable the physical improvements have been. The days of waking up an hour and a half before work or class to do my treatments, or waking up in a coughing fit with tears streaming down my face, feel like a lifetime ago. I feel like a new person with a future I had never previously envisioned. Trikafta has not only changed my daily life, it has also changed my future, potentially granting me an extra few decades of life.

If you know me, you know I have a hard time reflecting on this and simply being grateful. Of course, I’m deeply grateful! But this renewal of life I have been privileged to see is not the reality for everybody living with cystic fibrosis. That is not a world I can accept.

I think about my friends in Canada, Mexico, parts of Europe, India, South America, Africa, Russia, and everywhere else who are suffering without access to even basic medications. With Trikafta, some of those other basic treatments, such as hypertonic saline, the vest, and Pulmozyme (dornase alfa), may not be necessary. And if given to patients early enough, concerns about access to inhaled and intravenous antibiotics may not be a priority if mucus is so thin that culturing bacteria consistently is a ghost of CF past.

Many people still are not eligible for Trikafta or have yet to see vast improvements with it. We have a long way to go until every person on Earth, diagnosed or not, is expected to live even 80% as long as people without CF. It is not idealism to say that these people should all see robust figures, and that we must do absolutely everything in our power to achieve those results. It’s the moral and ethical thing to do.

How will we get there? The first step is acknowledging what type of medication Trikafta is. Patients are not customers, but everyone enjoys talking about economics. From a purely economic perspective, getting Trikafta to every eligble person with CF on Earth is fiscally smart. It would reduce the treatment burden of everyone, which would in turn reduce the insurance burden and cost. Improved health would reduce hospitalizations, thus reducing cost as well.

Is it ethical to view patients this way? Maybe not, but we know that often happens, so if we’re going to consider it a reasonable piece of discourse, let’s get Trikafta for everybody and give them a brighter future.

Let’s help everyone with CF plan for retirement.

Follow along with my other writings at my humbly named site, www.trelarosa.com, or subscribe to my newsletter “sonder, essays” at trelarosa.substack.com.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.