COMMENTARY: PASTEUR Act passage critical to combating superbugs

I never fully appreciated how true this outlook was until our son was born sick — chronically sick. Our son, Carmine, was born with cystic fibrosis (CF), which is a progressive disease that attacks the lungs and other major organs, resulting in long-term lung damage and, over time, the inability to breathe. Our world shattered with this diagnosis. Instead of dreaming of our son growing up to become an astronaut, we just prayed for his little lungs to be healthy enough for him to chase his big brother Oliver on the playground. We just wanted a healthy baby.

Carmine’s diagnosis had just begun to settle in: daily breathing treatments to thin the mucus in his lungs, chest physical therapy — pounding his little chest to clear his airways — multiple pills required before every meal so that he would thrive, and modulators taken twice daily to fight the disease, understanding these treatments would be necessary every day, for the rest of his life. Then we learned of a new threat.

One night we woke to Carmine coughing uncontrollably, and no amount of breathing treatments or chest pounding would ease his struggle. Our doctor explained people with CF are extremely vulnerable to getting lung infections, or “superbugs,” because of the thick mucus in their bodies. After countless infections and rounds of antibiotics, we learned firsthand these superbugs become drug-resistant — meaning current antibiotics cannot kill them. These superbugs plague not only people like Carmine with CF, but claim the lives of at least 35,000 Americans each year and in 2019 killed more than 1 million people globally. The problem is that new antibiotics are not being developed, leaving doctors without crucial medicine to save lives. Without action, this number could increase to 10 million people annually.

This past weekend, I attended a CF conference, hearing other parents share stories of their children battling these superbugs in hospital beds and dreaming that they would make it to that next birthday or family gathering. We cannot sit back. I will not be that parent in the waiting room hoping for an antibiotic to be effective. That is why I urge Sen. Catherine Cortez Masto, Sen. Jacky Rosen, Rep. Dina Titus, Rep. Susie Lee and Rep. Steven Horsford to support the PASTEUR Act, which encourages the crucial development of new antibiotics to combat this looming threat.

It is vital that we invest in the development of new medicines. Recently, the Cystic Fibrosis Foundation’s Infection Research Initiative reached its $100 million funding commitment thanks to our incredible community, but this needs to be supplemented to encourage the development of antibiotics. Developing new antibiotics is typically expensive and lengthy, costing $1 billion on average and taking around 10 to 15 years. We don’t have time. Carmine doesn’t have time.

The current market does not incentivize researchers and developers to produce new antibiotics. Experts estimate average revenue from an antibiotic’s sale is about $46 million per year, yet they require $1 billion for development. Recently, smaller biotech companies have taken on the burden of antibiotic production, yet they struggle to find investors and are often forced to suspend product development. These lifesaving antibiotics are simply not being made. What do I tell Carmine if one day there is no effective antibiotic for him?

The bipartisan PASTEUR Act helps ensure continued access to antibiotics by creating subscription-based financial incentives for these medicines. Superbugs will continue to pose a lethal threat unless Congress passes this critical legislation by the end of the year. I hope to see Nevada’s federal delegation support the PASTEUR Act so we can dream big for Carmine and those living with cystic fibrosis.

Emily Ellis is a Las Vegas resident and mother of a son with cystic fibrosis.