Jumping Over My Fear to Join a CF Clinical Trial

I used to be afraid of the thought of participating in a clinical trial for a cystic fibrosis medication. But when my doctor asked me recently if I was interested, I jumped at the chance. My desire to help myself and the CF community finally outweighed my fears.

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Amye Phinazee
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The people who participated in clinical trials and paved the way for cystic fibrosis care are the true heroes.

We will never know the struggles they faced. The same goes for the generation of CFers who will come after us. And so on and so forth.

Medication constantly evolves, and new therapies are always on the horizon. But what does that take?

We know that it takes brilliant, scientific minds and lots of funding to create new drugs and therapies. But oftentimes, amidst the excitement of new scientific discoveries, we forget the most important factor in drug development. The secret ingredient that makes it all possible … people with CF.

As a person who grew up fairly healthy and “normal” on the outside, I was never desperate enough to jump into testing for potential new CF therapies or drugs. I didn't start doing airway clearance until I was almost a teenager, and I never touched an inhaler until I was in high school. My lung function stayed a consistent FEV1 of 88-91 percent most of my childhood and teenage years. I was fortunate to stay out of the hospital and off IV therapy until my late teens or early 20s.

In my adolescent years, I often gave samples of my DNA to researchers and earned a Starbucks gift card or two here and there. It was easy, and I was at least doing a little something on my part to advance cystic fibrosis therapy and research without committing to using my body.

But as I've gotten older, my CF has caught up with me. When I was in my late teens, my lung function started to decline, and I started to acknowledge the disappointing truth that my cystic fibrosis was rearing its ugly head. I had lower energy, lower lung function, more frequent hospitalizations, and more side effects … My therapy routine started to take more time, my pill intake drastically increased, and I was seeing or communicating with my doctor more than I cared to.

When I was 23 years old, my doctor saw how hard I was working on my health -- doing stronger and more frequent therapies -- and asked if I would be interested in a clinical trial that he would be overseeing for a new CF medication. I can remember saying, “YES!” without even considering what that actually meant or entailed. I was just so excited that I could try something new to help improve my lung function. My heart sank as I realized that I didn't know what I was committing to.

Then came the intimidating information. I would be taking something that had been tested only in labs, and in some cases, healthy volunteers. And that freaked me out. Questions rushed into mind as my doctor sat down to explain the regulations and requirements for the clinical trial. What if it makes me worse? What if I grow an extra arm? What if I do something wrong to mess it up?

My family and I were hesitant. It's one thing to give samples of your DNA, but to commit your entire body for a drug in testing, that's an entirely different ballgame.

Amye-Dykes-Until-Its-Done-Actual

But after talking to my doctor, I made up my mind. If this is what I can contribute to the care of myself and the thousands of other CFers who are also suffering … if this is what I've been raising money for my whole life…if this is an option for me right now, then there was no question I would participate.

Clinical trials have such a stigma attached to them. There is a level of fear (and rightfully so) that creeps into your mind. But with that fear also comes a sense of pride and duty to the cystic fibrosis community. The thought that I've clung to throughout my experience with the clinical trial has been, “If not me, who?” I push past the fear of what could happen to me and cling to what this could do for the cystic fibrosis community.

I am a believer in clinical trials. I would encourage patient participation when the opportunities present themselves. My doctor wouldn't ask me to participate in a trial if he thought my health would suffer. I'm thankful for the opportunity that my doctor has given me, and I am even more thankful for the willingness and time dedicated to helping CF stand for “cure found.”

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Clinical Trials
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Amye, 25, was diagnosed with CF at birth. She is resilient and does not let CF hold her back. She strives to live a normal life and is diligent about taking care of herself and fighting for her future. Amye and her husband, Zach, are youth pastors in north Georgia. They enjoy going to the beach, the mountains, and concerts. She also blogs at amyephinazee.com  and enjoys cooking and featuring her creations on her Instagram (@phinazeeeats). Amye's spunk is often contagious, and she works to inspire everyone around her to live the best life they can. 

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.