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Post by Ella Balasa

My Passion for Patient Advocacy in Research

A few years ago, I began writing to inspire and motivate others. I am able to express the words that I can’t exactly think of when I speak. It brings me a sense of accomplishment, satisfaction and fulfillment.

But my writing stemmed from the experience of one of the most difficult times in my life. My first piece was a pained and confused reflection of being stuck in a position where my body was starting to fail me but ambition kept me reaching for the next rung to climb the corporate ladder. I had decided to turn down my first big girl job a year after college. Having cystic fibrosis, my life had other plans in store, and keeping up, in that sense, wasn’t in the plan. At the time, already only having 30% lung function, realistically, I wouldn’t be able to maintain 8+ hour work days and take care of my health to keep infections away and stay out of the hospital. It was one of the hardest decisions in my life – feeling like I was giving up a part of my identity. I submitted that first piece to be published in the CF Roundtable, a quarterly publication written by and for people with CF. Since that time, I have become a director of USACFA, the organization that creates the newsletter. I’ll talk more of that later.

After turning down the job, I vowed to find my success in other ways, but I didn’t know what that would look like, or whether I really would find it or just feel like I was floating through life. Little did I know, that first article I ever wrote, when all I wanted to do was vent frustrations and reach others that may have been going through the same things, ended up igniting a passion for writing that has provided me fulfillment and other opportunities to use my skills and biology degree simultaneously.

Working in the lab extracting bacterial DNA.

As time passed, some of my microbiology work intersected with CF, since common infections in CF lungs and antibiotic resistances they acquire are also commonly found in the environment. Having this background allowed me to explore and understand CF research. I have become involved in various research related advisory committees tasked in providing patient perspectives on research questions, as well as, working with researchers and professionals to help them and the general public communicate and relate to each other.

My background in science and my self-advocacy efforts paid off about a year ago when I became very ill with the worst lung infection I have ever had. Even before that, over the past few years, the exacerbations have become more frequent, so much so that I required oral antibiotics almost constantly, as well as higher doses of antibiotics delivered intravenously three or more times a year. During this particularly bad infection last year, I was using supplemental oxygen; my lung function was 18% and it was even difficult for me to take a shower because of how short of breath it made me. I was coughing constantly and producing thick green mucus for weeks, despite being on IV antibiotics. The antibiotics had stopped working and my infection had become completely antibiotic resistant. I knew I had to try something else.

I had heard about an experimental treatment called phage therapy a few months prior. Phage therapy is the use of a very specialized virus to attack a specific bacterial host. After some deliberating, in early January of last year, I traveled from my home in Richmond, Virginia to receive this treatment at Yale University. The treatment worked, and looking back, I don’t think I would have been able to clear that terrible infection without this intervention.

After this, I began advocating for phage therapy and serving as a voice to other patients.  I wanted to share my story personally to bring awareness to this potential treatment option for the CF community and other vulnerable patient populations facing antibiotic resistant infections. My perspective was published in the HuffPost.

I became interested in learning about the fascinating way phage can be manipulated to provide the best outcomes with treatment. I’ve had many patients reach out to me who are interested in accessing phage therapy asking for advice and guidance. I share what I know about the biological aspects, what I have learned about the process of obtaining treatment, the work there is still to be done with the FDA, beginning clinical trials, and just public awareness of this treatment in general.

Earlier in the year, I joined the CF Foundation’s Infection Research Committee, and have lent my voice to planning the research agenda to treat infections in the coming years. I wrote a blog with the Director of Drug Discovery at the CFF detailing the science of phage to the CF patient population. More recently, I have spoken at the Milken Institute to raise awareness about the dire problem we face against antibiotic resistant bacteria and the need for the development of novel therapies outside of traditional antibiotics to treat them, as well as sharing of my experience at the FDA for rare disease day.

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Speaking at FDA Rare Disease Day Feb 24th, 2020.

But to rewind a bit. Despite my relief in symptoms after that infection last January, my lungs remained very weak and I was referred for lung transplant. I relocated to Durham North Carolina this past summer to begin the transplant process at Duke University. For a few months every week day, I exercised doing pulmonary rehabilitation for 3 hours a day and attended transplant classes to learn about what my life would be like after undergoing a lung transplant.

But, after a few months in the program, I was granted compassionate use access to a drug that has given me the ability to breathe just a bit deeper improving my lung function enough that I decided to put transplant on hold for a while longer. I moved back to Richmond at the end of 2019.

It’s difficult to articulate the nuanced changes the medication has brought: My results have been gradual and moderate in comparison to other patients. Day to day, for example, mucus reduction has been slight, but over the course of a few weeks, I’ve found relief for a few more hours between breathing treatments. I am thin, but I’ve gained a few extra pounds. I stand just slightly straighter as my lungs aren’t heaving for each breath, which used to force my chest to collapse and my shoulders to roll forward. When exercising, I still require using about the same amount of supplemental oxygen, but I can walk just a few tenths of a mile further. The volume of my breaths has increased by 4 percent — as good as my highest lung function in the last three years, albeit a small overall change.

One of the days during this summer at the pulmonary rehab facility at Duke University.

Since that first article I ever wrote, I have come a long way on my path. I hope to reassure those reading this who are dealing with difficult circumstance outside of their control, to keep looking for ways to feel accomplished and motivated. For some of us, the inability to plan for our futures can be viewed as a negative thing, but it can allow us to pursue avenues we never thought possible. I often share the writing of CF Roundtable readers who speak about their CF journeys so their voices can be heard. Reach out to me if you would like to contribute.

Doing breathing treatment in front of the Roman colosseum summer 2018.

These days, I still feel the effects of my disease, but with my will power to focus my daily efforts on treatments, exercising, and nutrition, I hope to push through more years without needing a transplant. I hope to travel as much as I can. My next big adventure is planned this summer when I visit my family in Hungary. And most importantly, I am still able to continue pursing my passion of writing about new research and speaking of experiences to contribute to advancing novel therapies to improve patients’ lives

Other posts by Ella Balasa

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.