Ella Balasa, a Richmond resident and advocate for people with cystic fibrosis, was diagnosed with CF when she was 18 months old. (Photo courtesy Ella Balasa)
Richmond resident Ella Balasa has been dealing with cystic fibrosis for most of her life.
Diagnosed at 18 months of age, Balasa has lived through the hours of daily treatment, the IVs, the lung infections and the subsequent hospitalizations that are the hallmark of the disease. Lung disease and scar tissue have left her with 30% lung function.
“CF has affected my day-to-day life pretty considerably,” she says.
Cystic fibrosis stems from a mutation in a gene that causes a protein to malfunction, which in turn causes mucous to become thick and sticky. That abnormal mucous can affect various parts of the body. Mucous plugs may clog the lungs, affecting breathing; occur in intestines and affect digestion; block the bile duct; and disrupt enzymes involved with food absorption.
CF may lead to permanent lung damage; lung disease is the most common cause of death for people with CF. There is no cure. Until the 1980s, CF was often fatal before adulthood, but the average life expectancy is now around 40. Treatments that have become available in recent years have dramatically improved the lives of many young adults and children with CF.
Balasa, 28, has not allowed CF to get in the way of living life on her terms. She’s earned a degree in biology from Virginia Commonwealth University and worked in an environmental microbiology lab. Along the way, she has advocated for herself and others with cystic fibrosis, from serving on research review committees to organizing a virtual conference on the disease.
She was working in a laboratory conducting water quality testing when she realized she could use her scientific background and her firsthand familiarity with cystic fibrosis to help others. She now works to bridge the gap between the research community and patients regarding clinical trials and treatments, raise awareness of CF, and ensure that people with the disease have accurate, current information.
She was recognized for her efforts in August with a Social Health Award from Health Union, a business that seeks to provide online communities that link people with various medical conditions and their caregivers with health care industry partners.
As with Balasa, cystic fibrosis is often diagnosed in the first two years of life. Symptoms include thick mucous, salty-tasting skin, chronic coughs, pneumonia, diarrhea and foul, greasy stools, and slow growth.
Doctors seek to allay symptoms and control the disease’s progression. That generally involves antibiotics and treatments to clear the lungs, medications to thin mucous and reduce inflammation, physical therapy, and exercise. Lung transplants may be needed eventually.
CF’s impacts on the digestive tract are managed with enemas, nutritional therapy and medications to thin mucous and reduce stomach acid, according to the VCU Health adult cystic fibrosis program.
Treatments using gene therapy are especially promising. Trikafta, a triple-drug combination oral medication introduced in October 2019, targets a defective protein that causes the disease. It has been a boon to about 90% of people with cystic fibrosis.
“People with CF are living longer and [with] less deaths for the first time in 50 years,” according to Dr. Nauman Chaudary, director of VCU Health’s cystic fibrosis program.
Worldwide, there are about 105,000 people with CF, about 60% of whom are adults. Trikafta runs about $1,000 a day, according to Chaudary. It’s generally covered under health insurance plans.
The drug doesn’t cure CF, but it has reduced hospitalizations by 70% in people with CF. Chaudary notes that each hospitalization may cost $150,000 to $300,000 for treatment. The drug may also mean that fewer CF patients will need lung transplants. Chaudary says the transplants cost $200,000 to $300,000.
Balasa used her knowledge to advocate for herself and says that she received Trikafta when it was still in trials, in 2017. At that point, her lung damage was so severe that she was awaiting a lung transplant. The drug helped. “I was able to stabilize and [have not been] not transplanted yet,” she says.
The medication has allayed infection flare-ups, but there’s been substantial damage over the years, and that can’t be reversed, so Balasa likely will still need a transplant. “It’s given me a couple of years,” she says.
