Life-Changing moment- My Trikafta Approval

Sitting at home yesterday, the phone rang and I recognized the number. In that moment, I knew I had lived up to the words of advice my father gave me, twenty-plus years ago. Because of this, my Trikafta approval was in my grasp.

Let me go back to the winter of 1995. Atlanta was about six months away from hosting the Olympics. The Braves had just won their first of many world championships — or so I thought. My dad and I flew up to visit Thomas Boat, MD, at the University of Cincinnati, who was my physician for nearly a decade since his days at the University of North Carolina. Dr. Boat had seen me through my difficult college years when my lung function decreased drastically because of the way I took care of myself. Or perhaps it’s more accurate to say the way I wasn’t taking care of myself. Dr. Boat always spoke the truth and I had more faith in him than I had in any other doctor at the time, and probably any other doctor I will ever have.

I’d “cleaned up my game” since those trials in college and was a pretty good patient, though years of skipping classes and treatments had delayed my college graduation. I ended up graduating in 1996 instead of 1995 with a majority of my class. Yeah, I still missed a therapy here and there, and worked out most days during the week. I ran on occasion but had never run a long distance. I had a good appointment report that day in 1995. My lung function was back around 100%. It had slipped more than 20% during my depression in college but was slowly climbing back up. It’s not the appointment that was a vivid memory, though. It was something the other two people in that room said that morning. 

Dr. Boat said, “Everything looks good … for now.” It wasn’t the first three words that caught my attention. It was the last two. “For now?” What did he mean by that? My anxiety took off. Am I going to start feeling like Jell-O tomorrow? Are all people in their early twenties great and then the decline is like falling off Mt. Everest? 

My dad, who accompanied me to every appointment in my late teens and early twenties, was not a man of many words. He and I probably wrapped up most conversations with one word responses or even just simple nods. But that day was different. He responded to Dr. Boat’s analysis by saying: 

“That’s why you have to take care of yourself, Andy. You have to be ready so that when something big comes down the pipeline, you’re ready.”

After giving his advice to me, my dad asked the doctor his routine question, “Any advances in CF research?” Dr. Boat responded with his usual answer, “We’re hopeful. Maybe 7 to 10 years we could have something.” 

Seven to ten years felt more like a prison sentence to me and sad to say, it turned out to be much longer than that. But my dad’s words made me realize I had to step up my game. I didn’t want a cure or much less a major breakthrough to become available and I was either gone, or had let health go to the point it would do nothing for me. It was then that workouts went from 3 to 4 times a week to nearly every day, then eventually to every day. Short runs once a week slowly became 3 to 4 times a week to nearly every day, then every day and finally to running the Peachtree Road Race 10 kilometer event every year for 23 years and counting. 

Skipping therapies here and there stopped completely. I haven’t missed one since.

Fast forward to yesterday late afternoon. I saw the phone number, knowing immediately who it was, and was pretty certain I knew what it meant. I’d lived up to the deal quietly made between my father and myself that day. 

It was my rep at Vertex. “Andy, do you have a few minutes?” I put her on hold. Tears began flowing down my cheeks before I reconnected and said, “I’m good now.”

She continued, “Andy, you’ve been approved for Trikafta. Congratulations. Are you excited? Nervous?” 

I told her that I’d been waiting a lifetime for this drug. Three other breakthrough drugs had been approved by the FDA over the last seven years, but none of them fit my genotype. I had to keep “being ready when something big came down the pipeline.” 

Twenty-two days earlier, ironically the same day I’d been on The Today Show promoting CF awareness, the drug Trikafta was approved. It was only a matter of time that I would hear whether I was approved to take it or not. Though I grew frustrated for the next few weeks as social media blew up with posts revealing patients getting Trikafta from here to California, I knew insurance would eventually fold and I would get my “something big” drug.

The pharmacy still has to discuss it with the insurance company and complete some paperwork, but it looks like I’ll be receiving Trikafta late next week and be starting it soon after. I know I will probably exceed my deductible rather quickly and have to pay out of pocket a little more than previously, and there will likely be side effects. Getting used to the drug may take time and there’s always risk of the drug affecting my liver to a point where I can’t take it, or we adjust it, but that’s honestly not the point. 

The point is I had a deal with my father, or better yet myself, and stayed true to my word.

And now I have the opportunity of living longer and spending more time with my children so I can make deals with them, too.

Thanks, Dad.

Read more on my Trikafta Approval journey here: http://www.cfwarriorproject.org/trikafta/