Last week, the Food and Drug Administration announced its approval of the drug benznidazole, which is used to treat a parasitic disease that afflicts about 300,000 Americans and that, left untreated, can lead to heart failure. It sounds like a routine case of government agencies doing routine work—a relief during the Trump administration. For once, there’s good news.
But it is not as simple as it looks. This is actually a story of how advocates and physicians squared off against Big Pharma’s price gouging and federal policy loopholes—and won. Everyone who has to shell out hundreds of dollars right now for an EpiPen should be asking: How did they do it?
Benznidazole is used to treat Chagas, or the “kissing bug” disease, as it’s been nicknamed, since the insect that passes along the vicious parasite often bites near the face. Similar to the Zika virus, Chagas is mainly found in Latin America, where the so-called kissing bugs are prevalent. It is also transmitted here in the South with less frequency, though recently epidemiologists at Baylor College of Medicine in Houston have been finding that in some areas of Texas about half of the local kissing bugs are infected with the Chagas-causing parasite Trypanosoma cruzi. The disease can also be passed from mother to child during pregnancy, and often, even those who are infected don’t know they have it. A mother I’ll call Julia, to protect her privacy, was shocked when her premature baby, who weighed less than four pounds, was diagnosed with Chagas disease. She was more shocked to learn that she too was infected. “I didn’t know I could give it to my baby,” Julia told me.
Unlike Zika, Chagas already afflicts hundreds of thousands of Americans. Decades after being infected, which often goes unrecognized, 1 in 3 people will develop signs of heart failure. They will have irregular heartbeats, and the walls of their hearts will thin. They will need defibrillators, even heart transplants. Some Chagas patients die suddenly when their hearts can’t pump anymore. In the Western Hemisphere, the cost that the disease exacts in lives and disability makes the burden of Chagas eight times higher than that of malaria. And also unlike Zika, which currently has no easy remedy, babies and young children diagnosed with the kissing bug disease can be cured with a 60-day treatment of benznidazole. (The drug disrupts the parasite’s capacity to reproduce in the child’s bloodstream and affected tissue.)