'Doctors Said I Was Dying, Then I Was Offered a Way to Live'

I remember what happened to me in 2015 as though it was yesterday: the rush of footsteps, the sheer panic on the faces of the doctors and ICU nurses. The image seared in my memory is of me coughing up blood onto the belly of my pregnant wife.

What led up to this crisis started in 1980 when I was born with cystic fibrosis. My mom recounts that when I was diagnosed, there were no personal computers, no Google. There were no patient communities to rely on.

Naturally, my mom talked to my physicians, but she had to go to the public library to try to figure out what was going on. When I was finally diagnosed, they told her, "Just bring him home, hold him tight, because you don't know how long he's going to be here."

My mom sent me to school. Even though the doctors encouraged her not to waste her time, she did her best to see that I grew up like a normal kid and did all the normal things.

But with cystic fibrosis, there were constants in my life no other kid I knew had: hospital stays and hemoptysis, which is coughing up blood. That started to happen when I was 8 years old. Hemoptysis accompanied an infection or exacerbation that would require IV antibiotics.

Living with cystic fibrosis

I went to the hospital for two weeks every three months throughout high school; in college and beyond, I stayed for a month at a time. That was just what you did as a cystic fibrosis patient. But as I got older, I got sicker, and so did all the friends who I met in the hospital. We were like a little club. By the time I was out of college, most of them were dead. I felt like the last one standing.

In 2008, I met a girl, the first to convince me I had something else to live for. I made plans. I started to exercise. I got a bit healthier. I went into the hospital less often. But the blood remained. I had to change the way I slept; I couldn't sleep flat. I had to be careful what exercises I did; the wrong ones would start the coughing and the blood would follow. Even so, I was living a good life.

In 2015, lying on a bed in the ICU, my wife covered with my blood, I realized something had changed. It had never been this bad. I had multiple blood transfusions, but doctors didn't know what to do; three physicians walked out of my room after telling my wife there was nothing more that could be done for me.

"Start preparing people for Ronnie to no longer be here," they told her. Discharged, I went home. Somehow, just barely, I held on for the next three years. In 2018, I was enrolled in a clinical trial. It saved my life.

The trial that saved my life

I've been part of clinical trials my entire life, starting at age 8. My clinicians knew I was always "game," and would tell me about new trials, but this one was considered a potential game-changer in the cystic fibrosis community. I felt almost like I had won the lottery.

The drug was a pill taken twice a day. It took maybe three days for me to know that I was definitely not on a placebo. There was an almost instant difference in what I could do, in my energy levels, my breathing. I was able to actually play with my children for the first time in years without fearing a massive hemoptysis sending me back to the hospital. I was taking in deeper breaths than I had in over a decade, and I felt more "normal" than I had in years.

The fact that a pill could correct the basic defect of cystic fibrosis still blows my mind; I never thought I would see the day that it would be possible. My cells now worked like a "normal" person's, something that was hard to grasp. I finally felt like I was living the life I was supposed to live. And then the pandemic happened.

While we all freaked out about coronavirus and being locked down, people with the pre-existing condition of cystic fibrosis were especially worried about the impact of the virus on their lungs. But there was something I feared more than catching COVID-19. I didn't know if my clinical trial would continue and if I would still have access to this literally life-saving drug.

But the company who conducted my trial figured it out. They pivoted quickly, and, through remote technologies and protocol changes, the trial was never disrupted. I ended up being on the trial drug until 2022.

Throughout those four years, I heard from my trial coordinator every other week between site visits, virtual visits, and check-ins. I used to say that the one constant in my life were hospital stays and hemoptysis, but since I took part in that trial, I've haven't coughed up blood, nor have I been in the hospital.

When people say that clinical trials save lives, I want you to think of me. In traditional clinical trials, we're thought of as subjects, randomizations, enrollees. But I want you to think of a person, a husband, a father, somebody just like you trying to live and serve their fellow humans.

My counsel to drug developers and pharmaceutical executives, which I recently shared with industry leaders during a keynote address at the Decentralized Trials and Research Alliance meeting in November, is this: don't be satisfied with the status quo. I believe advancements are only made when patients take an active role and drug companies listen to them. My trial, for instance, continued through the pandemic because those conducting it actually talked to the people they were trying to help.

I advocate that we have to be willing to sit down at a table, whether in real life or virtually, and talk to families and patients. Stop guessing at what they need; ask them. Ultimately, it's their lives that are at stake.

Ronnie Sharpe is the co-founder of Savvy Cooperative, a patient-owned co-operative that works directly with healthcare innovators to make sure healthcare products and services work for all patients.

All views expressed in this article are the author's own.

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