My Experience with Phage Therapy: 3 Years Later
During CF Awareness Month, Emily’s Entourage (EE) invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post is by Ella Balasa, a patient advocate and consultant who lives with CF.
In 2019 at the age of 26, I underwent an experimental therapy to fight the worst CF infection I’d ever had. It worked. Three years later, I am here because of that one-in-a-million shot.
A Desperate Experiment
The untested experimental treatment that, at the time, neither I nor my doctor had heard of is called “phage therapy.” Bacteriophages, also known as phages, are viruses that attack a specific bacterial host and not other cells. Find the right phage, we learned, and you can use it to treat a particular bacteria.
Reaching that point of desperation was not surprising. Diagnosed with CF at age 1, I was constantly on antibiotics for various infections. I knew that one day, the antibiotic therapies that helped me my entire life might suddenly become ineffective due to antibiotic resistance.
That day came when I was 26 years old and experienced the worst infection I’d ever had. I was on intravenous antibiotics for weeks and I wasn’t having any relief of my symptoms. I was coughing nonstop and large green mucus plugs were constantly being expelled. I was doing breathing treatments every two hours or so just to quiet the wheezing and secretions in my airways as I breathed. My lung function dropped to 18% and I was put on supplementary oxygen. My feelings of fear and desperation shot through the ceiling.
A few months earlier, I had been in touch with some filmmakers who were shooting a documentary on CF. They had told me about a CF patient being treated in Texas with an experimental treatment called “phage therapy” to combat an infection that was resistant to available antibiotics. In my haze I wondered, could this be a viable treatment for me?
Given the severity of my infection, the advanced stage of my CF, and the dearth of options for me at that point, I felt I had nothing to lose. I brought the notion of phage therapy to my doctor and we contacted researchers at Yale University. A few weeks later, I found myself at Yale, sitting on a gurney, inhaling phages developed just for me.
Risk and Reward
After a one-week course of treatment, I began to clear the infection. This was truly nothing short of a miracle. So many treatments had failed or delivered mediocre results. My body’s response was shocking and exhilarating. I had used the phage treatment along with a cocktail of antibiotics that I had used many times, so I knew the addition of phage was the x-factor that made the difference.
Three months later, I received another round of phage treatment. After that treatment, I remained infection-free for six months. This was an incredible boost to my quality of life — up until this point, I had been on nearly constant antibiotics.
When these effects became less pronounced, I accessed phage for a third time. In the intervening time between treatments, I had taken multiple courses of oral and inhaled antibiotics. The antibiotic use had altered my bacterial population and the likelihood of finding the phage which would respond to the specific conditions in my body at that moment were low. Think about it like there are many switches and levers the bacteria can turn on and off. When some of those are engaged, they can fend off even phage that might work against them in another situation. Even within one individual, the treatment for a particular strain in one area of the body may not even translate to broader efficacy.
This time, the odds went against me: The course of phage therapy was not effective and I saw no changes. Now, my team of health professionals have to go back to the drawing board, analyzing my specific bacteria and identifying the right phage to treat it.
Am I disappointed that phage didn’t work for me this time? Yes, absolutely. That does not mean that it no longer has promise, just like my previous success with phage didn’t constitute a miracle cure.
Solutions for vexing issues like antibiotic resistance are rarely silver bullets. Rather, the goal is to spur innovation and research and try multiple approaches.
Given my experience and the experiences of many others with CF and other antibiotic-resistant infections that have benefited from phage therapy when all else has failed, it seems clear that phage therapy carries promise, but it is just one approach. We need to be firing on all fronts.
Future of Phage
There’s a good chance I wouldn’t be here today without phage therapy. As a long term solution, there are challenges that are hard to contend with.
With a treatment that must be developed and deployed on a case-by-case basis, it’s hard to extrapolate how one person’s experience might translate to a larger population. Because there is so much biodiversity in phages, there is likely a phage which can respond to each unique circumstance. Identifying that precise phage which suits the right person in the right circumstances is the looming hurdle that makes success such a gamble.
Other challenges of phage therapy include the short shelf-life of phage and the uncertain commercial environment for anti-infectives companies today. There are early clinical trials underway for pseudomonas aeruginosa, the most common bacterial infection in people with CF. The data that results from these trials will be critical to build a stronger case for phage as a treatment option.
What’s Next
Phage represents just one possibility for infection management among many nascent and yet-undiscovered ones. The truth is, I was very sick each time I underwent phage therapy, and I still am. My lung function is still dangerously low. In 2019 I started on a modulator which helped me significantly, but after two years the effects of this treatment have become less pronounced. I am in the position where I must find an effective treatment once again.
Progress in science happens in stops and starts. In my case, the serendipity of timing presented me an option – as risky and untested as it was – where no other options existed, and for that, I’m very grateful. Propelling forward quickly and exploring out-of-the-box options like phage is the only way to develop better solutions for people like me whose lives depend on it and who do not have time to wait.
Special thanks to Vertex Pharmaceuticals, Inc. for their tier 1 sponsorship of our CF Awareness Month campaign.