Bacterial Infections in People With Cystic Fibrosis: A Race Against Time


Patient advocate Ella Balasa has been living with cystic fibrosis her whole life. She experienced a multidrug resistant infection in 2019 and is speaking about her personal experiences at the World AMR Congress reminding people about the need to improve the antibiotic development paradigm.

Ella Balasa was diagnosed with cystic fibrosis at eight months old. Throughout her life, she has been hospitalized multiple times for lung infections. She has dealt with bacterial infections caused by the pathogens Pseudomonas aeruginosa and Stenotrophomonas.

She says that as the pathogens have colonized in her lungs, subsequent infections have become more difficult to treat. Her situation has become a revolving experience of hospitalizations and frequent use of antibiotics which have taken longer to treat and reduced their effectiveness in diminishing the infections.

A Life-Threatening Infection

In 2019, Balasa had a multidrug resistant infection that caused her to become seriously ill. She was even prescribed what is considered the last resort antibiotic, colistin. Her condition continued to deteriorate with her lung function going down to 18% and she had to use supplemental oxygen 24 hours a day.

At that point, she was in communication with researchers at Yale University who had been working on an experimental bacteriophage (phage) therapy. Phage has been a form of therapy treating some bacterial infections where antibiotics have not been effective. In the United States, phage therapy is not FDA approved and can only be used on an individual, compassionate use basis that can take many legal and medical loops to jump through.

Fortunately, Balasa was able to get access to the experimental therapy, which reduced the bacteria in her lungs, but did not eradicate it.

“I was able to get through that very difficult infection. But, my health has been precarious, and bacteria will always be a challenge for my day-to-day life,” Balasa said.

Everyone is Vulneable

Balasa acknowledges people with CF and others who are immunocompromised are at a higher risk of developing bacterial infections and in turn are more susceptible to multidrug resistant infections; however, she points out everyone is vulnerable to resistant infections.

“Even the general population can contract an [antimicrobial resistance] AMR infection in a hospital when they have a routine surgery done, and that can cause very serious and life-threatening problems,” Balasa stated. “So I think it's hard for people to understand, but one of my personal missions is to raise awareness and help people understand how great the impact of AMR actually is, and what the effects could be in the future, when we don't have adequate treatment options and antibiotics that will treat these very devastating pathogens.”

World AMR Congress

Balasa has become a patient advocate who specializes in research contributing to clinical trial development, research prioritization and committees, developing patient engagement initiatives, and sharing her personal health care experiences.

As such, she is going to be speaking at the World AMR Congress that is taking place today and tomorrow in Philadelphia. She is going there to tell her story and impress upon the pharmaceutical companies and key stakeholders the importance of changing the paradigm for antibiotic development through initiatives such as the Pasteur Act and other strategies to enable greater antibiotic development.

“I'm really looking forward to bringing my own voice to the conversations…And I think that is what inspires people the most is the patients’ stories and understanding how they really impact people every day,” Balasa said. This conference is to improve people's lives. And, I hope to bring that perspective and bring people together for this cause.”

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