Dustin Brown, a a slender, dark-haired guy who lives in southwest Indiana, is 36, married, and a stay-at-home dad. He never expected to reach any of these milestones: wife, baby boy, being away from his family in Kentucky. Not even adulthood. Brown has cystic fibrosis, an inherited condition that clogs major organs with sticky, muddy mucus and makes them a breeding ground for infections. When he was born, newly diagnosed patients were not expected to survive past primary school.
That the about 40,000 Cystic fibrosis patients in the United States have managed to beat this prediction thanks to better treatments – just three years ago, the United States Food and Drug Administration (FDA) accelerated a new drug combination to deal with the effects of the underlying genetic mutation, but also hard work. Each day, Brown follows a personalized regimen of exercises, supplements and pharmaceuticals to reduce the worst effects of the disease. This includes antibiotics: inhaled, in pill form and several times a year, through a catheter threaded into a vein in his heart. Brown calls taking care of her health “a full-time job.”
Yet he is losing ground. The mucus in Brown’s lungs harbors Pseudomonas aeruginosa, bacteria that cause serious infections in people with impaired immune defenses. If this simmering occupation turns into pneumonia, the results could be deadly, as tests by his doctors showed that Brown’s strain Pseudomonas is totally resistant to four antibiotics and partially resistant to two others. Brown has already tried the latest antibiotic the body reacts to. This triggered life-threatening anemia.
“What are we going to do, if all these drugs run out?” he asks. “It’s scary, when you have a family and you’ve come this far. In the back of your mind, it can have you.
The possible collapse of Brown’s treatment could be avoided if there was another option. Currently, there are no new antibiotics that doctors can add to his regimen. In the United States, innovation in antibiotics has stalled. The last new class approved by the FDA debuted in 1984.
A bill slated for a vote in Congress, called the Pasteur Law (named both for the 19th-century microbiologist and short for Pioneering Antimicrobial Subscriptions to End Upsurging Resistance), could repopulate this empty landscape by securing funds public to help a small number of new antibiotics come to market. The proposal enjoys bipartisan support in both the House and Senate, is backed by the Department of Health and Human Services (HHS), was implicitly approved in the latest White House budget, and resembles programs already implemented in other countries.
Independent analysts and drug company staff all say the measure is badly needed. But the Congress that meets again this week will be bruised by a scurrilous election campaign and distracted by races that remain unresolved. The body will also have to make decisions on a series of legislative proposals that were delayed earlier in the year by hyperpartisan jostling, and will have to choose what it can accomplish before its session ends around Christmas Eve. If the Pasteur law cannot be passed by then, it will have to be reintroduced when the new Congress meets in January. But this session will focus on the 2024 election, and it might be difficult for other issues to break through.