‘We’re still waiting’: As cystic fibrosis drugs deliver new hope, not everyone is being swept up by scientific progress

Source: STAT

The tiny round one is vitamin K. There’s a gel cap (vitamin D), a two-tone capsule (that one protects his liver), a square pill (generic Singulair), and more — seven pill bottles sharing space on his dresser with a “Criminal Law and Its Processes” textbook that’s thick enough to be a weapon.

Josh Hillman, a 23-year-old Harvard Law student from Alabama, has cystic fibrosis, the progressive genetic disease that causes frequent lung infections and wears on other organs. He has to pop enzymes with every meal to maximize the nutrients his body absorbs. While he sleeps, 1,200 calories of a nutritional shake drip through a tube directly into his stomach. There are the inhaled drugs — sometimes antibiotics, always a mucus thinner — that he breathes in through a nebulizer, and a blue vest that slips on, inflates, and vibrates, a 30-minute shaking session that he does twice a day to help clear the mucus that gunks up his airway and lungs.

“It makes it a little bit difficult to write,” he said, his Southern accent rumbling like his wheeled desk chair was careening across cobblestones.

But for all that is part of Hillman’s daily regimen — and that’s what he does when he’s healthy — it’s what’s missing that’s just as notable: one of the new cystic fibrosis treatments that have started to transform the lives of others with the condition.

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