Cystic Fibrosis Patient Urges Congress to Support the Development of New Antibiotics

Americans battle millions of antibiotic-resistant infections each year. Despite the growing number of infections and the resulting increase in health care costs, not enough of these lifesaving antibiotics are being developed. Marissa Benchea, a volunteer with the Cystic Fibrosis Foundation from Thibodaux, Louisiana, knows firsthand how dangerous, and potentially deadly, this dearth of effective treatments can be.

Courtesy of Marissa Benchea

Benchea is one of nearly 40,000 people in the United States living with cystic fibrosis, a progressive genetic disease that increases the risk of infection in the lungs, pancreas, and other organs, which also makes her especially vulnerable to antibiotic-resistant bacteria. Like many other people with cystic fibrosis, Benchea needs daily antibiotic treatments to combat the dangerous bacteria in her lungs. However, as bacteria continue to evolve and outsmart available antibiotics, Benchea depends on the development of new and more effective antibiotics—which is not happening fast enough to keep up with the evolving bacteria, leaving her and others to face a future with dwindling options.

This interview with her has been edited for clarity and length.

Q: Tell us about your experience living with cystic fibrosis.

A: Although I was diagnosed with cystic fibrosis at birth, my life has been incredibly blessed. I’m still here, and I get to do so many of the normal things that people get to do.

When I was growing up, my parents never put me in a bubble. I was busy with dance classes or playing outside with my siblings and friends. But at the same time, they were also always focused on keeping me as healthy as possible. Now, I’m very careful—because a cold or a flu could create months of me being acutely ill. Treatment routines and taking care of myself are big parts of my daily life. 

Q: How has the rise in antibiotic-resistant bacteria affected you?

A: Antibiotics are really important for controlling the infection in my lungs from multidrug-resistant pseudomonas, but my treatment options are limited. I’ve had dozens of courses of antibiotics, and throughout the years I’ve become resistant to all but one IV-administered antibiotic and one oral antibiotic. Due to the horrible side effects, I take antibiotics only when it is absolutely necessary.

My situation isn’t totally dire, which is great. But being vulnerable to drug-resistant bacterial infections really affects how I make decisions. I have to ask myself, “Is this worth it if I get sick?” I try to live my life as fully as I can, but I’m also very careful about the situations that I put myself in—because there’s no guarantee that there’ll be an easy and effective treatment available if I get sick.

Q: So you’ve become an advocate.

A: Yes. I’ve lost friends to cystic fibrosis. I have sick friends right now. And I see other people living with chronic illnesses every day. I want to be a voice for those who have spent so many years fighting. People with cystic fibrosis are a microcosm of individuals living with antibiotic-resistant infections. We’re pros at dealing with these infections. But we need better options moving into the future. My fear is that there’s going to be an outbreak of an antibiotic-resistant infection that people just can’t fight off and it’ll become the next pandemic.

Q: Is that why the development of new antibiotics is so important?

A: We’ve been using the same antibiotics for so long, and they’ve saved countless lives. But we’re overdue for new options because the bacteria are outsmarting us and becoming resistant to available antibiotics. Not only are people dying as a result of this antibiotic resistance, but the health care system is being burdened with unnecessary costs: Instead of an infection being easily treated with an oral antibiotic, the increasing resistance to available antibiotics is causing people to be hospitalized for weeks to fight what was once a common, treatable, and comparatively mild infection.

Q: How did we get into this predicament?

A: The pipeline to develop new antibiotics has stagnated because of the broken antibiotic market: It’s not profitable for drug manufacturers to invest in researching, developing, and bringing to market new antibiotic therapies. Congress has an opportunity to fix that by passing the PASTEUR Act, which would provide an economic incentive to pharmaceutical companies, especially smaller ones, to develop and sell new antibiotics.  

Q: This sounds like a market problem. Why does Congress need to intervene?

A: Antibiotic resistance affects all of us, and we have a bipartisan opportunity to slow this public health threat and positively impact our health care system. The PASTEUR Act is common-sense legislation that addresses an issue that affects people on both sides of the aisle, offering hope that we’ll have new drugs to treat resistant infections today and in the future. The bill also includes support for antibiotic stewardship, which helps health care professionals make sure that antibiotics are used appropriately—which is a critical step for making sure that currently available antibiotics remain effective for as long as possible.

We’re at a critical place in the fight against antibiotic resistance, and I want to see this Congress get something done to address the problem. Let’s not wait until it becomes an even bigger crisis. It’s extremely important that pharmaceutical companies are developing new antibiotics so that people aren’t needlessly dying. The PASTEUR Act is the way forward; we have to start somewhere. It’s time.