The Things They Don't Tell You About Participating in a Clinical Trial

What if you grew up knowing you wouldn’t live to 50? How would you make a decision to join a clinical trial to potentially elongate your life? These thoughts and decisions aren’t foreign to individuals with Cystic Fibrosis.

In 2017, researchers stated that the median predicted survival age for individuals born between the years of 1993 and 1997 with Cystic Fibrosis would live to 31 years old.

Jennifer's Story

Jennifer was diagnosed with CF at age 37, and was born in 1965. To say she is defying the odds is an understatement.

When Jennifer was born a mere 58 years ago, they didn’t know about her genetic mutation of CF. In fact, doctors and researchers didn’t know CF could be a product of a genetic mutation. Over the course of her first 37 years, Jennifer experienced various symptoms, but no one was able to put them together and recognize a root cause of her experiences.

At the age of 11, she had scoliosis surgery - a Harrington rod was placed in her back to fix the curvature of her spine. Nowadays, doctors are understanding a link between scoliosis and CF. After her surgery, she started experiencing pancreatic issues. Her doctor thought he fused a nerve to the pancreas during her scoliosis surgery. To address this issue, she was put on a diet to help manage pancreatic insufficiency. This is another telltale sign of CF - yet it would be many years before a pulmonologist put the pieces together and recognized she has CF.

Jennifer’s clinical trial journey hasn’t always been positive, yet she continues to advocate for their participation. With one trial treatment, she became diabetic. With another, she experienced a severe infection. Yet, she continues to partake in whatever she can, and she has fun while doing it. During one trial, she was inpatient at the hospital on the cardiac floor. She created a walking club for any patient on the floor who needed to walk the halls.

Most recently, Jennifer has been exploring clinical trials for Colonoscopies. Recent research suggests “The risk for colorectal cancer in adults with cystic fibrosis is 5–10 times greater than the general population, and even higher for people with CF who receive a lung or other solid organ transplant”. However, getting a colonoscopy is no easy feat for patients with CF. It involves a 5 day prep period, and last time Jennifer did this, her experience was less than optimal.

And so, Jennifer continues to contribute to research by participating in any and every study she can qualify for. Here is advice Jennifer has for anyone considering participating in a trial:

This is your opportunity to better the experience for the next generation.

You will learn something new every time you participate in something new, and this is priceless.

Sometimes it is hard to not know exactly how you are contributing to the study, but that’s okay! If you are okay with not knowing, then you won’t be disappointed.

Be open to doing whatever they need you to do. If they need to take labs, be okay with that.

Being part of a trial is so life changing because you are doing something to leave your little mark on the planet. It may not feel like it, but you are.

DeAnna's Story

DeAnna was diagnosed with CF at 6 months, when she was classified as “failure to thrive”. She went through the motions of having CF for the first 22 years of her life without a hitch. Then, the hospitalizations began. They started happening yearly, and then every few months, as her lung function deteriorated. As a mom to young children, her lung function plummeted to 32%. She was evaluated for a lung transplant, but decided against it.

Her last ditch effort to save her lung function before having a lung transplant as the only option was to join a clinical trial for the Tobi Podhaler. Thus began her almost 20 year journey participating in various clinical trials. Since enrolling in her first trial, DeAnna’s lung function has increased from 32% to 58%.

When DeAnna joined her first trial, she wasn’t expecting much of anything out of it. She was simply going through the motions because she was so sick. She needed accountability, and the trial provided that, as well as additional care. She didn’t necessarily believe in what she was doing, but soon she found herself becoming increasingly invested. The care coordinator helped her to build relationships with a network of providers, and this is what it’s all about.

Now that DeAnna has participated in a variety of trials, her thoughts have changed. She believes that without clinical trials, she wouldn’t be here today.

Here is DeAnna’s advice for anyone who is considering participating in a clinical trial:

Do it. For yourself - see what is out there, what might work for you. Do it for others - help your fellow person who cannot be in a trial.

This is how drugs come to market. Not only will you be able to help in that sense, but you will also garner connections and a community at local centers.

There is no downside to joining other than time invested in the study. Realistically, you can always quit, but you are going to get a more accurate understanding of where you are in the scheme of your condition. You will also get better care because you have more eyes on you.

If anything, she wishes she could go shout it to the world. Join a trial and contribute to research!