Growing Up with Cystic Fibrosis
Ella Balasa was diagnosed with cystic fibrosis (CF) at only 18 months old, after suffering from constant sinus infections, upper respiratory infections, and a bout of pneumonia. One of three siblings, Ella jokes she won the ‘genetic lottery’, since she is the only one with CF in her family. Despite this, Ella had a relatively normal childhood.
“I spent a lot of time in the hospital being treated for lung infections when I was growing up,” Ella recalls. “My daily treatments and medical care made me feel different from the other kids my age, which was difficult.” Cystic fibrosis affects not only the lungs, but also the pancreas’s production of enzymes, which are needed for digestion. While in school, Ella would visit the nurse’s office daily before lunch to take her enzyme pills before eating.
In college, Ella chose to study biology and ended up working in a laboratory after graduation.
“It was in this role that I first realized my own experiences as a patient could help bridge the gap between research and patient communities,” Ella says.
At the time, her team was studying antibiotic resistance, something Ella had personally dealt with in her own medical journey. “I’ve had to use antibiotics frequently to treat lung infections, which over time means that my body has developed a resistance to them. There have been points in my life where treatments wouldn’t work for me because of this. It was interesting having this connection between my own life and the research we were working on,” Ella recalls.
Amplifying the Patient Voice in Research
Inspired by this connection, Ella started volunteering with the Cystic Fibrosis Foundation and joined several advisory committees. She was able to use her degree and experience to review study protocols and provide input about what the priorities and needs of patients are when developing new research studies.
It was through this early work with the Cystic Fibrosis Foundation and other groups that Ella began developing a more professional patient voice. Her connections led her to start working with larger industry groups to help develop patient-friendly communications about upcoming clinical trials and new treatments. Since 2020, Ella has committed herself to working full-time as a patient engagement consultant.
“My goal is to lend the patient voice into developing better treatments and services,” Ella says.
Since then, Ella has grown her industry connections by speaking on panels, at conferences, and by attending other events. She began branching beyond CF consultation, ensuring the patient perspective is represented within research for other rare diseases. Now, Ella works with industry professionals to identify and meet the needs of many different patient communities.
Phage Therapy & Clinical Research
Around the time she began getting involved in advocacy, Ella was invited to be a part of a documentary about CF where she met another patient who was receiving an experimental treatment called Phage therapy. “This was an alternative to the antibiotics I had become resistant to, so I was very interested in trying it,” Ella recalls. The next day, she contacted the research team at Yale directly and was approved to begin the medication.
The treatment was incredibly successful for Ella, which inspired her to write an article for Huffington Post about her personal experience with CF, antibiotic resistance, and seeking alternative treatments. “I was really excited to bring more exposure to the topic of antibiotic resistance because it is common for people with chronic conditions and isn’t talked about often,” Ella says.
Since her treatment in 2019, there has been a lot of advancement in the field of PHAGE therapy, with clinical trials now available and more research being explored.
Ella is a proponent of clinical trials, explaining, “The best way to bring new treatments to communities is by participating in the necessary research. As a patient, it’s a commitment that needs to be decided carefully, but if you do choose to participate, you become a piece of the larger puzzle that leads to new medications, therapies, and even cures. Patients can and should be involved in the decision-making process and outcomes of new treatments.”
Unfortunately, Ella is not eligible for most CF clinical trials because her lung function is below 40%, one of the most common general exclusion criteria used in research. “I believe it’s important to develop adaptive trial endpoints and protocol designs to make clinical research more inclusive to a broader population of patients,” Ella says. “Everyone wants new treatments, but the eligibility criteria often exclude the patients who need new treatments the most.”
Connecting Patients & Industry
“Empathy must be the root of all healthcare interactions. For there to be meaningful communication between larger pharmaceutical companies and the patients they are serving, there needs to be a desire to understand the needs of patients and the barriers they may be facing in their daily lives. Real patient care happens along the way, when industry provides support and interest in patients outside of their experiences taking a new medication,” Ella says.
A large part of Ella’s role as a patient engagement consultant is making sure patients are brought into the conversation early on, beginning with trial protocol development, all the way to the post-study dissemination of information.
“I view healthcare as a loop. As patients, we are one group that contributes to improving healthcare, but it can’t be done without the physicians and researchers, and industry organizations. They are our partners in advancing treatments,” Ella shares.
Advice For Aspiring Advocates
One of the most rewarding parts of Ella’s work has been the relationships she has been able to foster with other advocates. “I’ve seen the work that others are doing, and it inspires me to get even more involved,” Ella says. “The drive and passion that stems from all these individuals is amazing.”
If you’re interested in getting more involved within a patient community or becoming an advocate, Ella advises to start by sharing your story. “When you’re not afraid to share your story and ask questions, doors will open for you. Don’t be afraid to reach out and make those connections. I’ve reached out online to many organizations to share my ideas and volunteer for opportunities, and I’m so glad that I have.”
Additional Resources:
To search for medical conditions in a specific location, visit our Search Clinical Trials page.
To stay informed about clinical trials, visit our Resources page.
For volunteer opportunities with CISCRP, visit our Volunteer page.
Written by Lindsey Elliott, Marketing & Communications Manager, CISCRP | lelliott@ciscrp.org
